Joining me today are Lisa Cosgrove and Brian Piper, two of the authors of a paper which appeared in the BMJ. The paper is entitled “Undisclosed Financial Conflicts of Interest in the DSM-5 TR: Cross-Sectional Analysis,” and it was published in January 2024.

Lisa Cosgrove is a clinical psychologist and Professor at the University of Massachusetts, Boston where she teaches courses on psychiatric diagnosis and psychopharmacology. A former Research Fellow at the Edmond J. Safra Center for Ethics, Harvard University, her research addresses the ethical and medical-legal issues that arise in organized psychiatry because of academic-industry relationships. She is co-author, with Robert Whitaker, of Psychiatry under the Influence: Institutional Corruption, Social Injury, and Prescriptions for Reform.

Brian Piper is an Associate Professor of Neuroscience at Geisinger Commonwealth School of Medicine in Scranton, PA, with a secondary appointment at the Center for Pharmacy Innovation & Outcomes with Geisinger in Danville, PA. He maintains an active program of research in the pharmacoepidemiology of controlled substances including opioids, cannabinoids, and other controlled substances, behavioral neurology methods development and quantitative medical ethics.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Lisa and Brian, welcome both of you. Thank you so much for joining me for the Mad In America podcast. I’m delighted to have you on to get to talk a little bit about your work.

Lisa Cosgrove: Thank you. We’re delighted to be here.

Brian Piper: Thrilled to be here.

Moore: To get us underway, could tell us a little bit about yourselves and your areas of research interest?

Cosgrove: I’m a clinical psychologist by training. I’m also affiliated with the Ethics Center at the University of Massachusetts, Boston. The research that we do broadly looks at the ways in which academic-industry relationships can have a corrupting influence on medicine and, in particular, on psychiatry and psychiatric diagnostic and treatment guidelines.

Piper: I’m an Associate Professor of Neuroscience at Geisinger Commonwealth School of Medicine. I also have a secondary appointment with the Center for Pharmacy Innovation & Outcomes with Geisinger in Danville, Pennsylvania. I have two lines of research. One is on conflicts of interest in medicine broadly, looking at influential information sources that are used by physicians and other healthcare providers. Then I also have another line of research on pharmacoepidemiology, looking at the increasing use of medications, whether it’s for attention deficit hyperactivity disorder, depression, or for a wide variety of other psychological disorders.

Moore: We’re here today to talk about conflicts of interest, and in particular, a piece of work that you both did examining financial conflicts of interest and the DSM. But before we get to the paper itself, I think people probably have a broad sense that conflicts of interest can be bad. But I wonder if we could talk about specifically why they can be such a problem?

Piper: If we think about the history of psychiatry for a little bit, people are pretty well acquainted with Sigmund Freud and his very close relationship with cocaine. Cocaine is mostly associated with being a recreational drug that is smoked, but it also was and continues to be used as a medical drug, particularly for eye surgeries. Sigmund Freud was a major advocate for it. He wanted his friends to use this drug, he wanted his family members to use this drug. He was also a major user for an extended period.

When medical historians say, “This particular person got an appreciable amount of money from a pharmaceutical company, in this case, Merck and Parke-Davis,” we want to know how much money it is. When he says that there are no cravings associated with cocaine, we want to know, is that advice coming from his expert opinion having used this drug quite extensively, or do those conflicts of interest and the money that he was receiving influence the medical care that he was providing? That was an issue then, and that continues to be an issue to this day.

Cosgrove: The only thing I would add to Brian’s excellent point is that conflicts of interest can incur implicit bias. It’s part of the human condition to have biases and to remain blissfully unaware of them. We often assume, quite wrongly, that the scientific process can protect us from those implicit biases. So, one of the reasons why conflicts of interest in medicine are problematic is because they do lead to these implicit biases, what some have referred to as pro-industry habits of thought. In terms of the DSM, it hasn’t been that long that we’ve had this medicalized view of emotional distress, and the medicalized view of emotional distress is certainly an industry-friendly perspective because it leads to the development of psychotropic medications as interventions, but it’s not necessarily in the public’s best interest.

Moore: And of course, some of the people involved are what are known as key opinion leaders, aren’t they? So, they’re quite important figures in the field of psychiatry and one gets a sense of them acting almost as a marketing tool rather than a tool of science.

Cosgrove: Yes, that’s a very important point. There are key opinion leaders in all areas. Nike knows that to sell sneakers they’re going to tap a very famous athlete and in much the same way that Nike knows that, so too do the pharmaceutical company executives.

Moore: Let’s turn to your BMJ paper, “Undisclosed Financial Conflicts of Interest in the DSM-5 TR: Cross-Sectional Analysis.” What was the question that you were trying to answer with your work and how did you go about the research to answer that question?

Piper: I can start with a little broader perspective on the research question. So I’m coming at it from the pharmacology side of things. I teach pharmacology for medical students, for residents, and for graduate students, and influential materials can have a very profound effect on the practice of medicine.

Members of my team have been doing studies for the past 10 years, looking at point-of-care databases. We’ve been looking at a lot of different information resources, like the New England Journal of Medicine and the Journal of the American Medical Association, and the general pattern is that the conflicts of interest are really important. The National Academy of Medicine says, that if you’re going to put together clinical practice guidelines that you can trust, you should have authors that don’t have a conflict of interest wherever possible.

The American Psychiatric Association (APA) and their publications require that authors disclose conflicts of interest. So we were a little bit surprised, maybe even a little bit mystified that the APA, in publishing the most recent version of the DSM, didn’t have some sort of preface about the conflicts of interest, even in small font. That information wasn’t available. So, we wanted to help them out, if you will, and get this information into the public domain.

Moore: And it was the Open Payments Database you used, is that right?

Piper: Yes, it is an amazing resource that has been available for the past few years. At the risk of a digression, I would suggest to every listener: Before you go to your primary care provider, your psychiatrist, your physician assistant or your nurse practitioner, do a quick Google search for CMS Open Payments, and with a little bit of practice, ideally, if you know their middle initial, you can look up their conflicts of interest. And that’s what we did for the 160 or so contributors to the DSM.

Moore: If these people are aware that anyone can go and find that information, and they’re obviously happy to accept industry money, and for it to be presented as public information, do they not think it’s an issue? Do they not mind that this information is out there for researchers to grab and present to the public?

Cosgrove: That’s a good question. It is curious because when Shelly Krimsky and I first did our study in 2000 (published in 2006) on conflicts of interest in the DSM-IV, we found that almost 60% of the authors had financial conflicts of interest. Then, a year before the DSM-5 came out in 2012, we published a study looking at the conflicts of interest and, at that point, the APA did institute a conflict of interest policy. I’d like to think that maybe our 2006 study had a small role to play in that. At any rate, they did have this policy. And yet, what we found was approximately the same percentage of panel members had ties and the ties were particularly strong in those areas for which pharmacological treatment was the first-line intervention.

So as Brian was saying, it is curious that, given our past publications and their conflict of interest policy, they didn’t have one for the 2022 DSM-5 Text Revision (DSM-5-TR). What’s unique to this study, even though in many ways it’s a replication of our previous work, was that we were able to use the Open Payments database which started in 2014. Shelly and I weren’t able to do that in 2006 or 2012. So what Brian was saying is so important because as long as you’re in the US, you can look up any physician and see not only how much money they’ve received, but the type of funding and, as you were referring to James, you can see if they were, in fact, key opinion leaders.

Moore: Thank you so much. And can you remind me of the total amount that you found again? Was it $14 million?

Piper: It was $14 million, completely undisclosed. So the readers of the DSM wouldn’t know this. Unlike in the APA journals where there is this information, or at least you know the names of the companies, none of this information was available.

Moore: In reading the paper, one thing that struck me as really important was that if there was some regulation mechanism at the diagnostic end, that might help matters. If there were an objective biological test for example, that itself might regulate the increasing trend in diagnoses. But because we appreciate that psychiatric diagnoses in the main are quite subjective things, then if someone is looking to the DSM and doesn’t necessarily realize that there’s been industry influence, there’s nothing at the back end to help regulate the number of diagnoses coming through. Is that right?

Piper: Yes, that’s completely right. So, depending on how you count it, of the 300 or so disorders in the psychiatric bible, the DSM, there’s only a handful that have an objective laboratory measure. That includes defining an objective laboratory measure pretty broadly. You could include something like a scale like a weight scale for anorexia or, for narcolepsy, hyper creatinine deficiencies occur in about a third of patients. But for the vast preponderance, this is based on very expertly, very carefully obtained but subjective information.

Cosgrove: There are actually no biomarkers for any of the DSM disorders. So Brian is right and I just want to emphasize that point.

Moore: In the paper, you’ve done a breakdown of how much money was coming in per group of disorders. It was quite interesting to see that the biggest one was medication-induced movement disorders. Which I guess speaks that there seems to be an avenue there that the pharmaceutical industry is quite interested in exploring, and therefore is trying to maybe pump money into it to stimulate some demand.

Cosgrove: Yes. And again, there are two points I’d like to emphasize. One is that, once again, what we found was that the categories for which there was the most industry money were the categories of disorders for which pharmacological treatments are the first-line intervention.

But the other point that I want to emphasize is that we’re not in any way suggesting wrongdoing or any sort of quid pro quo mechanism at play here. Again, the issue is implicit bias that creates this pro-industry habit of thought which reinforces a medicalized view of emotional distress. So it’s not the case that we think that there are any sort of backdoor deals but, rather, by medicalizing distress, we deflect attention away from the upstream causes such as austerity policies, unsafe or inadequate housing, food scarcity and so on.

Moore: Is this a problem that’s particularly prevalent in psychiatry or does it affect all sectors of medicine?

Piper: I would argue it’s a really broad problem that isn’t limited to psychiatry. We’ve done other work looking at cardiology and oncology journals. This is a broad issue. I continue to do these studies beating on this drum that self-reporting conflicts of interest doesn’t work. I submit these manuscripts and some of the anonymous reviewers come back and say “Yeah, we’ve known for a decade that self-reporting doesn’t work and that mandated reporting is the way to go.” However, journals continue to rely on self-reporting. And I don’t want to disparage my gender at all. However, people with a Y chromosome have a particular difficulty with this issue.

We keep on seeing this over and over in studies. We’ve looked at contributors to the point of care database like Medscape. So we’ll look at it up and it’s like, oh, you’ve received money for the major products for Parkinson’s disease. You write an article on Parkinson’s disease and even though you receive $400,000, you say you have no conflicts of interest. That’s curious.

This is a widespread issue and I’d argue this isn’t just an American issue. We really should be grateful that America has a tool like CMS Open Payments that’s been mandatory for a decent period. In some other countries, it’s either more recent or non-mandatory.
So in some ways in America, we have our challenges, but at least we have some tools to begin to deal with this whereas some other countries are less further along in having tools like this.

Moore: Understood. Your study appeared in the British Medical Journal, which is a pretty prestigious publication. It only came out in January, it’s March now, but I wondered what kind of feedback you’ve had since you published your article.

Cosgrove: The APA did write an editorial immediately after it was published and they didn’t disagree with any of our findings. They tried to say that these conflicts of interest didn’t affect them, which, again, is problematic, because it’s just part of the human condition to have implicit bias.

The other thing I just wanted to circle back to thinking about what Brian had just said is what’s unfortunate are the downstream effects of the conflicts of interest. By that, I mean the fact that psychiatrists and other prescribers are not receiving balanced, accurate information. We know that there’s certainly a connection between industry funding and pro-industry results. And unfortunately, the peer review process is not robust enough to protect against that.

So like Brian, I teach a psychopharmacology class to masters and doctoral students. We did a study a few years back looking at conflicts of interest in psychopharmacology texts, and they are rampant. So one has to be concerned about our medical students and doctoral students receiving accurate and balanced information from the text. I would argue that when there are lots of conflicts of interest on the part of the authors, we need to be skeptical about the information that’s being disseminated.

Piper: Lisa’s done a fantastic series of studies on this topic. And we did get some interest from media organizations and podcasts like this. I had some particularly interesting comments on Reddit which is a fairly snarky place. Some of the people were just like, “Ho-hum. We know this, kind of yawn”. So yes it is getting out to the general public but this is an unfortunate situation where if the APA loses trust, it’s really difficult to gain that back. There’s an easy solution to prevent that, there are tools like open payments if they can list the link in the next version of the DSM. I’m young enough and Lisa is energetic enough so we will be there to do this for the next version of the DSM but we hope we don’t have to, we hope they will do that for us.

Cosgrove: To Brian’s point about the sort of Ho-hum response. If you told people that eating a candy bar increased longevity and overall health then they found out that that study was funded by Hershey, most people would be certainly skeptical. They wouldn’t have to be schooled in conflicts of interest. And yet, sadly, when it comes to medicine, I don’t think people are as aware as they could be of the ways in which these conflicts can result in imbalanced and sometimes inaccurate information.

Moore: You talked there about the next version of the DSM. So if we look to the future, is it sufficient to have these conflicts writ large in the work? Or should we go further than that, and examine some split between industry and how it contributes to research? Is it enough just to name these things or should we go further?

Cosgrove: Definitely. We should go further.

Piper: Just disclosing isn’t sufficient, it’s the management of these conflicts of interest that is important. The National Academy of Medicines’ dream would be to use people who don’t have conflicts of interest. Also, as the former chair of the DSM-IV task force has indicated, 80% of psychiatric meds are prescribed by general practitioners. So why not have general practitioners and other people that are involved in this process? So no conflicts of interest and other voices on those DSM working groups and panels to have those other folks better represented. That would be my dream.

Moore: Is there any reasonable chance of that happening?

Piper: I’ve been a little underwhelmed. I’m a neuroscientist who came from the decade of the brain and was excited to be learning more about the biological underpinnings of psychiatric disorders. And even when there’s been progress in some psychiatric disorders and genetic components, the number of geneticists on the DSM panels is extremely limited, it continues to be underwhelming. So I’m not optimistic, frankly.

Cosgrove: I think the DSM could be a more helpful diagnostic instrument if you included the people who are affected by the conditions. We have to remember that the creators of the DSM don’t just have the authority to change symptomatology or add a new disorder, they also have the authority to narrow diagnostic categories or even take out previously included disorders. Homosexuality would be a good example.

Moore: Was there anything else we should talk about that I hadn’t got to?

Cosgrove: Two things come to mind. One is the issue of guild interests. As I was mentioning, that’s why I think if you have a diversity of people on the panels, and on the task force, you’re going to get a more well-rounded instrument. What’s that saying… Never ask a barber if you need a haircut, a psychologist if you need psychotherapy, or a psychiatrist if you need medication. So the guild interests are another inevitable part of what it means to be human. I wouldn’t trust a guideline on psychotherapy if it was written by all psychologists. You need methodologists and you need more than just content experts. You need people who don’t have skin in the game, in terms of what they’re recommending.

Then in terms of the explosion of diagnoses, there was a really interesting article that came out a couple of months ago on what’s called the prevalence paradox. One of the things that the authors pointed out is that in areas of medicine other than mental health, when you have good treatments, then the prevalence of the disorders goes down. Antibiotics would be a paradigmatic example. Infectious diseases and bacterial infections went way down, a real game changer for humanity.

We don’t see that in the mental health field. We have more treatments, but we have an increasing number of people with disorders. Now I think the reason for that is multi-determined, it’s certainly not just related to industry and conflicts of interest. I think that social media has played a significant role, particularly in the increase in ADHD diagnoses. And there’s this part of the zeitgeist now, many people are encouraged to identify with disorders in a way that I don’t know is necessarily helpful for humanity.

Piper: I have just a big-picture thought. Lisa and I played an important role in this but there are others as well. I want to shout out for Lauren Davis and students at Geisinger Commonwealth School of Medicine and students at UMass Boston who played a key role in collecting and triple-checking this information and making this publication happen.

Moore: It’s clear from reading the paper how much effort went in and I’m so glad to see it in such a well-read place as the British Medical Journal. Thank you both for taking some time to explain your work and approach.

Cosgrove: Thank you so much.

Piper: Thank you.

***

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The post Undisclosed Financial Conflicts of Interest in the DSM-5: An Interview with Lisa Cosgrove and Brian Piper appeared first on Mad In America.

In this interview, Justin joins us to talk about the ways in which society has attempted to explain or categorize madness over the years. We also discuss the value of looking at madness, not as disease or defect, but as a designed feature.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Justin, welcome. Thank you so much for joining me today for the Mad in America podcast. I’m delighted to get to chat with you about your work and your latest book.

Justin Garson: Thank you so much, James. I’m really happy to be here.

Moore: To begin with, I’d like to ask a little bit about you. So you’re a Professor of Philosophy at Hunter College in New York and you have a particular interest in studying madness, the evolution of mind and purpose in nature. You’re also an author, and you’ve written on topics such as aging, genetics, mental representation, biological functions, mechanisms in science, and the concept of information in neuroscience. Your work is often at the intersection of philosophy, madness, and biological function. So what was it that led to your interest in these subjects?

Garson: My interest is in psychiatry and madness is lifelong. A few months after I was born, my dad was diagnosed with paranoid schizophrenia. He was working under Richard Nixon at that time, and I think that that had something to do with it. Nixon was famous for surveilling his staff, and I think that my dad was surveilled at one point. I think that the stress of that triggered a series of psychotic episodes and he was hospitalized. He was able to return to work, but about 10 years later he had similar episodes that really made it impossible for him to continue working.

And so I spent a lot of my teenage years visiting him in various mental hospitals and getting a very clear glimpse of the toll of this cycle of hospitalization, labelling and drugging. Then eventually getting out and getting re-hospitalized, labelled, drugged, and so on. Then at 16, I was hospitalized for depression for about six weeks. I got first-hand experience of what it’s like to not be able to walk off the premises of a hospital because a doctor doesn’t think that you’re fit to leave. I was also put on Prozac. This was the late ’80s, so at that time it was still considered this “wonder drug” that was going to reverse the “chemical imbalance” that causes depression. So by the time I was 16, I’d probably seen more of the inner workings of psychiatry than anyone really should.

Around 2000, I was a graduate student in philosophy, and I wanted to explore some of these questions from a more philosophical and historical point of view. One of the big philosophical questions at that time was what they called the “demarcation problem” namely, how do you distinguish madness or mental illness from any other kind of socially disvalued behavior? So why do we call schizophrenia a mental disorder, but not believing in conspiracy theories? Why do we consider depression a mental disorder but not jealousy?

At that time, and I suppose this is still true if you ask a lot of psychiatrists how they decide whether something is a mental disorder, a lot of them would say, “In order for something to be a mental disorder like schizophrenia or depression, there has to be something objectively not working right inside that person. There has to be something in their mind or their brain that’s just not functioning the way that it’s supposed to. That’s what distinguishes depression from just ordinary jealousy or grief.”

But then of course, if you’re a philosopher you’re going to have one more question, namely, how do you decide what’s functional and what’s dysfunctional? Who gets to decide whose brain or mind is functioning well and whose brain or mind is functioning poorly? And are you sure that’s not just a kind of concealed way of introducing these value judgments? And usually, those kinds of questions were met with complete silence.

So I started getting very interested as a philosopher in thinking about what are biological dysfunctions and what are functions. When a biologist says the function of zebra stripes is camouflage, what do they mean by function and dysfunction? Let’s figure out what that means on a biological level, and then think about how it might apply to psychiatry.

From there, I got very interested in conceptual problems of biology. So I got interested in function. I got interested in the concept of information in neuroscience. I got interested in the concept of aging and whether evolution can help us understand the human mind. So it’s only in the last several years that I’ve finally been able to work my way back to my primary interest, which is paradigms in psychiatry and how we think about madness as a society.

Moore: Just before we come on to talk about your book, I’m interested in your choice of the term madness rather than mental illness or disorder or mental health or whatever it might be. You’ve written that using the term madness is your preference. So I wondered if we could talk about that a little bit.

Garson: As you know, the term “madness” has been or is in the process of being re-appropriated or reclaimed and in many circles, it’s no longer considered a derogatory term. So we can talk about the Mad Pride movement for example. It connotes something like difference, perhaps surprising difference, perhaps sometimes harmful kinds of differences, perhaps sometimes insightful kinds of differences.

Secondly, it seems to me when you describe something as a mental disorder or a mental illness, you’re already presupposing that this phenomenon falls under the authority of medicine, that it’s the doctor’s job to deal with. That’s, of course, an assumption that I want to put into question. So there’s something, to me, which would be very wrong about using a term like mental illness or mental disorder to help explore the philosophy and history of psychiatry when that term just reinforces this assumption that I want to challenge.

Moore: I’d like to go on to talk about your 2022 book entitled, Madness: A Philosophical Exploration. It’s a fascinating journey through the many ways in which society has attempted to explain or categorize madness over the years. As I mentioned to you before, it’s one of those books that I found myself reading and after every four or five pages or so, I’d have to put it down and have a good think about what I had just read. That to me is the sign of quite a meaningful book.

So, for example, in the book you recount that the philosopher Immanuel Kant begins his taxonomy of madness in his 1764 “Essay on The Maladies of the Head.” He says, “There are three faculties of the human mind: experience, judgment and reason. Consequently, there are three, and exactly three, basic forms of madness, and each form corresponds to a breakdown in one of the three faculties.”

Then if we contrast that with modern times, we’re now on to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), which I believe has something like 157 listed disorders. But despite this explosion of diagnoses, the story doesn’t appear to be one of settled science. So I wonder, in your research, what did you come to think about the way in which we’ve pursued a definitive classification of mental suffering?

Garson: Let’s maybe go back to a big-picture perspective. So the purpose of the book generally was to really rewrite the history of madness. And often when historians write about the history of psychiatry they write about it in terms of a clash or confrontation between two views, a biological brain-based point of view and a psychological mind-based point of view, which is fine and there’s a lot of truth in that. But I wanted to use a slightly different lens. I wanted to look at the history of psychiatry as a clash between two paradigms which I call madness-as-dysfunction and madness-as-strategy.

The basic idea behind madness-as-dysfunction is this notion that when somebody is mad, it’s because something inside of them isn’t working the way that it’s supposed to. Something in your mind or your brain just isn’t working right. You’re looking at the person kind of like a broken machine, and your job as a doctor is to figure out how to fix that machine.

There might be some benefits to it, but in some ways, what I’m calling madness-as-dysfunction is very harmful. When I decide to look at your words, actions and feelings as the byproduct of a broken mechanism, that robs you of a certain level of personhood or agency.

The other paradigm is what I call madness-as-strategy, where you’re willing to see in madness something like a purpose or a function or an adaptation. And I can come back to that later a bit more about what I mean by madness-as-strategy.

But to answer your question, the view that I’m calling madness-as-dysfunction is not new at all. It’s actually very old. As you know from the book, it goes back to the Hippocratic doctors. If you look at the book On the Sacred Disease, written probably around 400 B.C., the view that the author lays out very clearly there is that all the different forms of madness just stem from oxygen deprivation to different parts of the brain. And it’s interesting that you mentioned classification because once you have this basic idea that madness represents a disease or dysfunction, it becomes extremely tempting to want to classify the different forms of madness in terms of the different ways that the mind can fail to work the way it’s supposed to work. In the same way that you might want a listing of all the different ways that an automobile might fail to work the way that it’s supposed to work.

You see this, as you mentioned, in the 18th century philosopher Immanuel Kant, where he says there are only three forms of madness because there are these three different faculties of the human mind, and so there are only three different ways that the mind can break down. You see this in the DSM, you see this in the RDoC (Research Domain Criteria). As I see it, they’re all just versions of the same project, listing all the ways that the mind can break. Of course, things are different today, because unlike Kant or the Hippocratics, we have many different ways that the mind can break down and apparently it’s quite a lucrative business.

Moore: I’d like to ask more about madness-as-dysfunction versus madness-as-strategy. In reading the book, you see this gradual change and the creeping medicalization to perhaps put psychiatry in charge when it’s a dysfunction view. But it struck me that if madness is seen as a dysfunction it immediately puts the medical professional in charge. They know the diagnosis, they know the outlook or prognosis. But if you look at it as madness-as-a-strategy, then surely the person experiencing or having developed that strategy to avoid a painful reality is the one in charge. It made me wonder if there are important reasons to think about madness outside of a medical context, and if so, are there benefits to thinking about madness in this way?

Garson: That’s a great point. I do suspect that there is a very deep connection between what I’m calling madness-as-dysfunction and psychiatry as such. So sometimes I talk to psychiatrists who say, “Look, you’re describing this one particular point of view, but we have a lot of different points of view. Sometimes we use what you’re calling madness-as-dysfunction, and sometimes we use madness-as-strategy and we take a very individualistic and pluralistic approach.”

But it does seem to me that to the extent that we think of psychiatry as a branch of medicine, it has to be wedded at a very deep level to a dysfunction or a disease-centred view of madness. Otherwise, why would it fall under the authority of medicine? If you didn’t think that madness was something like a disease or something going wrong inside of you, then it’s not clear why that would be a medical problem at all.

So that’s why I do think that even though there are some psychiatrists who take very progressive, and interesting and different points of view on madness, I do think that the profession as a whole is wedded to a certain dysfunction-centred point of view.

So I guess the core shift that I would like to see is a shift from pathology to purpose, or a shift from madness-as-dysfunction to madness-as-strategy. And it’s almost impossible to describe madness-as-strategy in the abstract. As you know, I have a blog with Psychology Today that I use to explore what I see as a lot of different research programs in mental health that exemplify what I’m calling madness-as-strategy.

If any of the listeners wanted to find that, you can go to my website and you’ll see links to all the posts there. There I talk about depression, I talk about some of the so-called personality disorders. I talk about delusions, voice hearing, some of the conditions that fall under the neurodiversity banner and what it would really mean to shift from a pathology to a purpose point of view.

Just to give you one example of what I’m talking about, we can take depression. As you know, for decades we’ve been searching for this hypothetical brain abnormality underlying depression. That project has not panned out very well, as far as I’m aware. But there’s a newer paradigm which has been inspired by some of the evolutionary thinkers. And in this paradigm, depression is far from being a brain disease, it’s something like your mind’s evolved signal. It’s something like a designed signal that your brain is giving you that something in your life needs to change and needs more attention.

So in a way, the evolutionary theorists look at depression in the exact same way that we look at pain. So suppose you stub your toe or burn your hand, you feel this excruciating pain. Feeling the pain, that’s not a disease, a disorder, or a dysfunction. That means everything inside of you is working exactly the way that it’s supposed to. The pain is your body’s natural signal to get yourself away from the source of danger. And so a lot of the evolutionary thinkers see depression and anxiety in the same way, as something like your brain’s functional signal that there’s something in your environment that needs more attention. So that would be one example of shifting from a pathology to a purpose viewpoint on depression.

Now, if that’s true that would have profound implications for research, for treatment and stigma. So think about treatment. If I’m treating somebody for depression, the first question isn’t going to be, okay, let’s look for some hypothetical chemical imbalance that’s creating your depression. The first question is going to be, okay, what in your life might this be a response to, it’s probably not something really obvious but something real that needs more attention.

I think it would also change our readiness to medicate. I’m not saying that medication has no place at all in depression, but if we do think of depression on the model of a functional signal then the first step is probably not going to be to bombard it with drugs. The first step is going to be looking at what in your life it might be a response to.

And then finally, I think it has deep implications for stigma. So there’s a researcher that I’ve been working with, a psychologist at the University of Michigan named Hans Schroder, and he studies the psychological impact of different ways of framing depression. So he’ll get together a huge number of volunteers who have had experience with depression. To half of them, he’ll give a dysfunction-centered message. He’ll say something like, “We now know that depression stems from some kind of a chemical imbalance in your brain and it can be treated in one of various ways.”

To group two, he’ll say, “We now know that depression is something like pain. It’s like your mind’s functional signal that something in your life needs more attention.” And then he looks at the impact that these different messages have on people. And what he’s found is that people who are exposed to this function framing tend to be more optimistic about treatment. They tend to think, okay, this is something that I can get a hold of. They tend to feel that their depression has some important insights to offer them, and they tend to feel less stigma about their depression, they tend to feel more inclined to talk with other people about their depression. So that’s a lot to say, but I think that there are a lot of far-ranging implications of thinking of what we call madness in terms of purpose.

Moore: It’s fascinating to think about how much shame it removes for people when they might think for themselves, “I’m in a perfectly understandable place, it’s a perfectly understandable reaction to some horrible circumstances that I’ve been in,” rather than give them a message that there’s a mechanism that we can’t really explain in your brain, but we’re going to chuck chemicals at it and hope it somehow resolves itself. I was really heartened to read that if you encourage people to think of this understandable reaction then it tends to be quite positive for them and their experience of the whole situation changes.

Garson: I really do think that over the last decade, psychologists are discovering just how disempowering and stigmatizing these biomedical framings are. Which is a surprise because in the ’80s I remember very clearly when they would say, “Once we start thinking of mental illness on the model of diseases, once we get everybody to think that depression is kind of like diabetes or schizophrenia is kind of like cancer then we’re going to have this golden age where suddenly people will not feel stigmatized and will not feel at fault and they’ll be able to talk about it.” I think it’s really the last decade we’re seeing that, okay these messages can be extremely disempowering and stigmatizing in perhaps a different way than we anticipated.

Moore: Justin, what are your thoughts on how it is that the medical model has become so deeply entrenched in our society and our culture? It’s interesting, isn’t it, if you talk with friends and you talk about people suffering mental distress, and you mention poverty, inequality and injustice or whatever else it might be, then they kind of get that those things can put people in a very difficult place. But if you talk about mental illness in that regard, then the conversation very quickly becomes scientific and medicalized and holding psychiatrists as the experts. So this biomedical narrative has really taken hold, hasn’t it?

Garson: That’s such a huge question. I think there are so many factors. As you know, in my view, there’s this dysfunction-centered view that’s very old and we see it repeatedly throughout history, but I think you’re absolutely right. Something happened around the 1970s and 1980s, and this medical dysfunction-centered view just became entrenched in our collective consciousness. And the way that we think and talk about mental illness to the point where people often get offended if you suggest that what we call madness or mental illness is anything other than a medical problem. And I think there are so many reasons why that change took place.

I’m actually writing a book about that very topic right now that’ll be coming out in a couple of years with St. Martin’s Press, exploring from the point of view of one particular psychiatrist named Solomon Snyder. I’m kind of looking at his life and exploring how this medical point of view took hold partly through his actions and advocacy.

Snyder was really the innovator of this dopamine hypothesis of schizophrenia in the 1970s. He did a lot of important work. He discovered the brain’s dopamine receptor. He showed that the first-generation antipsychotic drugs primarily seemed to work by blocking up dopamine receptors. And on the basis of that, he formulated what seemed like a very simple and appealing idea, namely schizophrenia just comes from the dysregulation of your dopamine neurons.

It’s thanks to that dopamine hypothesis that the floodgates for this biomedical perspective really opened. There had been a lot of people obviously throughout the century who had endorsed a biomedical disease-centered perspective in contrast to say psychoanalysts or people with a more sociological orientation. But I think that the dopamine hypothesis and then later the serotonin hypothesis gave ammunition to this biomedical point of view. And they were able to say, look this is no longer a speculation; this is basic science that we’re dealing with. But there are a lot of factors I think that influenced that.

Moore: And of course, it was an open door then for the pharmaceutical industry, wasn’t it, with their massive marketing dollars. Wasn’t the slogan that accompanied the marketing of Prozac “Better than well”? So they suddenly saw themselves as able to chemically manipulate people’s behavior. Not only were they treating a disease, but they could apparently improve people’s lives. And a lot of the marketing went along with that.

Garson: Right. Once you have what seems to be a scientifically vindicated idea that these major mental disorders can now be explained in terms of neurotransmitter abnormalities in the brain, that is an open field, obviously for pharmaceutical companies to come along and say, “Hey, guess what, we have exactly the drug that’s going to reverse that chemical imbalance.”

One person I really have come to respect quite a lot is Joanna Moncrieff. I think that she sees something that a lot of historians miss, which is that one of the factors that led to the entrenchment of the biomedical view was not the availability of these drugs; most of the drugs that are on the market today are versions of stuff that’s been around since the 1950s. It was this changed philosophical and conceptual understanding of what these drugs actually do.

The idea became that drugs like chlorpromazine, and drugs like Prozac, they don’t work just by helping you to dampen your emotions. They’re not just tranquilizers. They are specific, targeting underlying chemical abnormalities. And I think she’s right that medical psychiatry and the pharmaceutical companies needed a vision like that. It wasn’t enough to say, “Look, these drugs seem to help some folks maybe they’ll help you too.” We needed to have this idea that these drugs reverse a chemical imbalance. I do think that’s why she’s gotten so much flack. She gets criticized so heavily by psychiatrists because by questioning that assumption, by questioning the idea that these drugs work by reversing chemical abnormalities in the brain, you’re unravelling the whole basis of this solidification of medical psychiatry in the ’80s. It’s a very dangerous thing to say.

Moore: It’s removing the foundation stone from the story of mental illness and drugs to fix chemical imbalances. I’ve spoken with many people for whom the effects of the drugs often cause more problems than the issue that you’re dealing with in the first place.

Garson: I don’t doubt that they help some people but if I’m going to take these medications I’d rather just know, look we don’t really know why they work. They seem to help some folks maybe they’ll help you. And then I’ll take my chances. But certainly, it was true for me in the late 1980s and I assume it’s still true for a lot of people now that I wouldn’t have taken these drugs if I didn’t actually believe that they weren’t reversing some kind of a chemical imbalance. That was the basic presumption that I had when I took these drugs. I didn’t just want to take drugs that would somehow impact my mind in such a way to make me feel a bit better.

Moore: While reading your book and other books that I’ve read around this subject it’s plain that there’s a huge amount of fantastic academic work, looking at is there benefit in thinking more widely about how we conceptualize mental suffering or distress or madness. And yet, of course, when you get out into the real world, then the whole mental health conversation is still very medicalized. It’s still really the purview of doctors and psychiatrists.

I think you have said that people have the right to be exposed to different frameworks for making sense of their suffering, as long as those frameworks are scientifically credible. So my question is how do we start to cut through this dominance of the medical model narrative, do you think?

Garson: That’s a great question. How do we start to change things? Let me just say a word about this notion of the medical model itself, because I often run into this kind of objection. I’ll talk to folks who say, “Look, psychiatry isn’t really using a medical model anymore, we’ve moved past that. We now have a biopsychosocial model, which is very pluralistic and very tailored to the needs of the individual.” And to me, I see all this talk of the biopsychosocial model as the proverbial wolf in sheep’s clothing.

To me, the whole question is are you seeing madness-as-a-dysfunction? Are you seeing it in terms of something inside the person not working the way that it’s supposed to? Seeing madness-as-a-dysfunction is perfectly compatible with taking a biopsychosocial approach. I mean, you can take a biopsychosocial approach to cancer. You can take a biopsychosocial approach to diabetes. You should take a biopsychosocial approach to these various diseases. But that doesn’t mean that you’ve moved at all away from a disease or a dysfunction mentality. So I do see that the biopsychosocial model is really just the medical model in disguise. It’s maybe a more philosophically sophisticated version of the medical model.

On the topic of changing paradigms, to some extent, I’m skeptical that psychiatrists will be the ones to lead the way in this movement. And it’s not necessarily just because they have so much at stake. But I think part of the extensive medical training that they get is just reinforcing the idea that they are actually dealing with diseases or disorders and they need to fix them.

As I said, there are a lot of psychiatrists who do not fit that mould, who are doing great, groundbreaking, important work trying to move away from dysfunction-centered framings. I respect them profoundly. But I do think that as long as we see psychiatry as a branch of medicine, as an institution, psychiatry is going to remain wedded to these dysfunction-centered models.

So I think it falls on each of us to take as many opportunities as we can simply to promote new models and promote alternative models. I like to think of what I’m doing as trying to kind of clog up the infosphere with different models of madness. And I’ve been fortunate in some ways because I’ve had some platforms that I can do that with, like Aeon, Mad in America and Psychology Today. The book I mentioned that’s going to be coming out with St. Martin’s Press. But I do think at this point, it really is about finding creative ways of just getting these alternative framings out there to the public and to the people who need to hear them the most.

Moore: Thank you, that’s so important. And then perhaps if we look towards the future a little bit. If we were to move away from a medicalized view of madness, and if we were to embrace the idea that madness has purpose and we can learn from it, how could we or how should we organize ourselves to best fit people struggling? Are there lessons from history that can be useful? Or do you think we haven’t really yet found a way forward?

Garson: That’s another huge question. I can’t really say what mental health will look like in the future. Obviously, it’s going to look very different for different people who are experiencing distress or even just in extreme states of consciousness. I do think there are a lot of non-pathologizing approaches to mental health. I suppose that the most exciting and promising of these are projects that are led by mad people, by service users, by ex-patients, by people who have been diagnosed as having serious mental illnesses. So of course, you have projects like the Hearing Voices Network or the Open Dialogue Movement or Soteria Houses. From what I understand, these put the emphasis on peer support and on exploring alternative non-pathologizing framings of these extreme experiences.

As I’ve said, and I thank you for pointing out, I don’t entirely reject medical framings of certain kinds of distressing or extreme experiences, but I do believe firmly that everybody has the right to be exposed to different models, different frameworks for making sense of their experiences, so long as these are scientifically credible and not just made up. So in some ways, I do feel very hopeful about the future.

Moore: Your whole point is that if people see madness-as-a-strategy, that puts those people in the driving seat to be part of their own recovery if indeed recovery is what they need or what they are looking for. But if it remains in the medical domain then they’re kind of always relegated to a second role only of listening to a professional or an expert when probably they are the expert in their own experience.

Garson: I do think what I call madness-as-strategy is just one alternative paradigm for getting away from this dysfunction. I’ll just call it a dysfunction-centered model, because when I talk about the medical model, people say, “Oh, there is no medical model” or “We’ve moved past the medical model.” But yes, as I see it, madness-as-strategy is one promising alternative to the dysfunction-centered model, but I do not doubt that there are other alternatives. I like the way you put it. It’s about putting the person in the driver’s seat and giving them tools to think about and make sense of and possibly change the way that they’re experiencing the world in a way that doesn’t relegate it to some kind of a byproduct of a disease process.

Again, there are some people for whom that might be a useful and valid way of seeing things. And I don’t want to rob anybody of something that’s going to be a useful and valuable tool, but it certainly doesn’t deserve the dominance that it’s come to acquire.

Moore: Thank you, Justin. It’s been fascinating to talk with you today. Your book was mind-expanding in the best possible way. To get an appreciation of the way that we’ve thought differently about madness over all the years and the fact that it isn’t sorted even now was so interesting to read. Thank you for spending some time with us today.

Garson: Thank you, James. I do appreciate your taking the time to come up with these really just interesting and insightful questions. And I really appreciated our conversation.

***

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The post Is Madness an Evolved Signal? Justin Garson on Strategy Versus Dysfunction appeared first on Mad In America.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

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The post Robert Whitaker Answers Reader Questions on Pharma Marketing and Psychiatric Drugs appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/12/robert-whitaker-answers-questions-pharma-marketing-psychiatric-drugs/feed/ 9 https://www.madinamerica.com/2023/12/robert-whitaker-answers-reader-questions-part-1/ https://www.madinamerica.com/2023/12/robert-whitaker-answers-reader-questions-part-1/#comments Wed, 13 Dec 2023 11:01:17 +0000 https://www.madinamerica.com/?p=251851 On the Mad in America podcast this week we have Robert Whitaker with us to answer questions sent in by readers and listeners.

The post Robert Whitaker Answers Reader Questions on Mad in America, the Biopsychosocial Model, and Psychiatric History appeared first on Mad In America.

]]> On the Mad in America podcast this week we have Robert Whitaker with us to answer questions sent in by readers and listeners. Thank you to all of you who took the time and trouble to get in touch. You sent some great questions and on this and our next podcast, we will be talking with Bob about Mad in America, the biopsychosocial model, the history of psychiatry, pharmaceutical marketing, and issues with psychiatric treatments including psychiatric drugs and electroconvulsive therapy.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Bob, welcome. Thank you so much for joining me again for the Mad In America podcast, and thanks for spending some time answering reader and listener questions. 

Robert Whitaker: It’s nice to be here again. Thanks for inviting me.

Moore: The first batch of questions are around the theme of Mad in America itself. Carina sent in the first question and she asked, could you tell us how MIA got started and what your role was in getting it underway?

Whitaker: After I published Anatomy of an Epidemic, I began hearing from people who wanted to talk about what it meant for them, both from people with lived experience and from prescribers. At that time, I already had a personal blog based on my first book, Mad in America, and I began running other blogs. Then it became obvious that it would be really helpful to have a website to provide a forum for people with lived experience to talk about their experiences and provide a forum for people, including prescribers, family members, or activists, to write about their thoughts about how we might change psychiatry.

And, of course, Anatomy of an Epidemic is really a story about how we as a society have organized ourselves around a false narrative of science. One of the key things in terms of reforming or rethinking psychiatry is to provide the actual research to the public. What is known about drugs and what is known about the validity of diagnoses, that sort of thing. It became evident that it would be useful to have a website that provided those three things, a forum for personal experiences, a place for blogs, and research news.

I had known Kermit Cole ever since I published Mad in America. Louisa Putnam wrote to me after Anatomy of an Epidemic was published with some questions. The three of us got together and said let’s start a website, and it was founded by us three. It was a joint project and it launched in January of 2012.

Moore: Looking back now, are you surprised with the way that Mad in America has grown over time? When you started out, what was your vision for the website?

Whitaker: I didn’t really see it growing, and there wasn’t a long-range vision. It was sort of a need at the time with those three elements in mind and really nothing more than that.

We started it, by the way, as an all-volunteer organization. Everybody was putting in their time. I don’t think I had any vision of what it might turn into with this number of people contributing and having all the different elements we have today. The only thing I can say is that from the beginning there was a sense that we would be very agile and open-minded to new possibilities precisely because there wasn’t a real vision for how to expand it. It was just, let’s see how this goes and let’s see what we can build.

Moore: So on a similar theme, an anonymous person asks the following: Mad in America has been going for 10 years; can it keep going for another 10? 

Whitaker: Putting this in context, from the beginning there was the sense that we would be an alternative media because the mainstream media is not a reliable narrative of the actual science. And that’s what we’ve become.

You can’t find what’s on Mad in America anywhere else on the web in terms of the information about drugs, research, news, and the variety of opinions and personal stories. We’re now 11 years in and I think we occupy a very important place, not just in the United States but globally, in terms of helping society rethink and consider other possibilities and to do so in an evidence-based manner.

I think it’s important that we continue. However, I will tell you there are challenges and the biggest challenge is financial, frankly. Right now, as you know, we’re hitting a bit of a crisis. We’ve expanded to a place that far outstrips our donations, so we have to rethink how are we going to keep on funding this work.

I can imagine it keeping on going for another 10 years, but we now have this very real challenge. How do we fund an alternative media that can’t tap into any of the usual sources for funding? Even grant sources, because grants, by and large, go to those that are close to the mainstream idea.

Yes, I hope we’ll stay alive for another 10 years, but it’s not easy being an alternative media and finding the funding to do what we do.

One of the things we’re considering now is adopting a subscription model. Under the subscription model what will happen is we’ll have some of our content where, in order to read the complete article, people will have to subscribe. Our thinking is that it will be a minor fee like $5 a month, maybe $40 a year, and we’ll provide some other benefits like free access to all MIA webinar events. And we will include a free option for subscribing. If anyone can’t afford the subscription they can write to us and we’ll set them up as a free subscriber.

What we want to do is make sure that everyone, no matter what their resources, will have full access to all our content.

Now, this year we’re going to have something like six million unique visits to our site. Hopefully, we can convert those visits into a solid subscription base. If we do that, we should have the resources to continue to expand our original journalism, that sort of thing.

Moore: Another anonymous question. Are you ever worried that Mad in America’s reporting and blogs might cause harm? To give a little bit of context here, a few weeks ago Allen Frances on X (previously Twitter) claimed that Mad in America advises people to go off their drugs, which of course is not true. But that’s one example where someone used social media to try and cast aspersions on what Mad in America does. 

Whitaker: This was a claim used to shut us down right from the beginning and it goes back to when I published Anatomy of an Epidemic. That was a book that told of how, when you look at the long-term effects of psychiatric medication, you see a form of treatment that worsens aggregate outcomes. You see that people are more likely to become chronically ill with long-term use and more likely to become functionally impaired. Now the very first review that was published five minutes after midnight on publication day accused me of doing great harm with this book. The reviewer likened me to a South African dictator who by virtue of denying AIDS had caused hundreds of thousands of people to die. This book was positioned as a harmful book right from the beginning.

After that review ran, by the way, in my hometown newspaper, the Boston Globe—that’s a great thing to see in your morning newspaper—I had radio interviews cancelled, and frankly, no other major newspaper reviewed the book.

Now we do know that going off drugs can be very risky. That’s a function of being on the drugs in the first place more than due to the disorder. But what’s our job, and what does society need? Society needs informed consent around the use of these drugs. The harm that has been done is by a profession that doesn’t provide informed consent and a media that doesn’t dig into what the research literature actually says. That’s the harm being done because that has led to a misunderstanding of what the drugs do. That has led to many people being on the drugs long term when clearly short-term use would be much better, or even trying to forego initial use. So you have to go back to the initial source of harm.

By the way, all the data says that with this new disease model of care, the burden of mental disorders has gone up. Outcomes have worsened. That’s a story of great public harm. Unfortunately, what is needed is an alternative media that provides informed consent, and that means providing information about what drugs do and what are short-term effects, what are long-term effects, and that’s what we provide.

Now, I will say we’ve heard from so many people who say this information has given them a new life, a new understanding of what happened to them. That’s a story of great benefit from informed consent.

Do we advise people to go off drugs? Never, ever. In fact, if you read Mad in America, it tells of how perilous and how difficult it can be to go off the drugs, and that you may experience difficult withdrawal effects. We never advocate for any particular mode of therapeutic action. We’re just trying to give people the information they need to make informed decisions.

Anybody like Allen Frances who says we’re harming people, you just have to say to yourself, oh, these people do not believe in informed consent. They believe in information being kept from people so they will keep on taking their drugs.

Moore: Next another anonymous question. Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States and abroad. What would need to happen for you to consider that mission fulfilled? 

Whitaker: In a way, I think the mission is happening and the fulfilling of the mission is happening. If you go back 12 years ago and look at the narrative that was spreading throughout the internet and even into mainstream media, it was very different. The chemical imbalance story was still alive then, the disease model was still alive, and there was very little talk in the public media about drug withdrawal effects. There was very little talk about how in essence the whole disease model narrative had fallen apart. Now here we are 12 years later and there’s increasing discussion about withdrawal effects. There’s an acknowledgement even within the profession that the diagnostic categories lack validity. There’s even an admission now that there has been no improvement in outcomes. Now, they don’t want to say that outcomes have worsened in the last 40 years, but there’s that acknowledgement of “no improvement.” Then there are calls for radical change coming from the top, and I’m speaking specifically of when Dainius Pūras was the United Nations Special Rapporteur for Health, he made these calls, and it was a call that was basically consonant with what we have been advocating through our reporting.

Of course, the World Health Organization has twice now issued 300-page documents saying we need a radical change away from the disease model and towards a human rights model, one that recognizes that there are social determinants of health. Disorders don’t just occur inside the individual but in the in-between spaces and in how society organizes itself. These are all themes that tell of a new narrative and these are all themes that we have been advocating for a long time.

Now the question is, will the mission ever be done? Even as these calls for a new narrative have come forth, and even as they’re gaining a foundation in the general public, the form of care hasn’t changed. Forced treatment is on the increase. It’s still basically drugs, drugs, drugs, drugs. There’s a sense that in order for the mission to be accomplished you’d have to have a new storyteller, not psychiatry, having authority over this domain of medicine. You would have to have a larger group recognized by society as the storytellers for the narrative we should follow.

Is that going to happen? I don’t know. Medical authorities have a lot of established authority in our society. It’s really hard to put them to the side and say these people shouldn’t have authority over this part of our lives. But if we have a new narrative in 10 years, maybe I’ll say mission accomplished and we’ll figure out what to do at that time.

Moore: A couple of other questions on Mad in America and its work before we move on. This next question is about working with others. This is from Mary who says some campaign groups have legislative efforts and track laws and regulations other groups lobby. Are there any ways that MIA could play more of an advocacy and change agent role? Is there any effort to join forces with others? 

Whitaker: This is a good and important question. We are an activist form of journalism because, as you see in our mission statement, we do see a need to change the narrative. But we see our role as serving as a journalistic alternative media to serve that mission best. In order to retain our journalistic sense, we can’t lobby for anything. By the way, as a non-profit now we’re not allowed to lobby for anything, but we also don’t actually join forces with anyone else.

For example, as you know, I had a role in founding IIPDW (the International Institute for Psychiatric Drug Withdrawal). Now I’m no longer one of the board members, and this is part of the reason we can promote what they’re doing. In other words, we can serve as a forum for IIPDW to announce what they’re doing and as a forum for whatever research they come up with. But we don’t join with them in setting forth an agenda.

We need this editorial independence saying, here’s our job, we’re an alternative media, we’re not a lobbyist organization, but we will report on lobbying efforts. We’ll let people talk about their lobbying efforts in blogs but we’re a forum for change within a journalistic context.

Moore: This question is from Tara. Why are readers of Mad in America welcome to share our stories and concerns about psychiatry, but we are shut down if we try to discuss the similar shortcomings of AA-style 12-step programs? 

Whitaker: I’m not sure I know why Tara feels shut down on this issue. In terms of personal stories, we let people talk about what’s been harmful to them and what’s been helpful to them. For example, I’m sure people have talked about help coming from 12 steps, and if people found it harmful and it’s a personal story that’s well written, I don’t believe we wouldn’t include that. There’s nothing saying that criticism of 12 steps is off-limits. In fact, criticism of any type of therapy is not off-limits.

This person can write to me personally, but there’s no sense that Mad in America wouldn’t publish a personal story by someone who’s had an unfortunate experience or a harmful experience with 12 steps.

Moore: This question is from Lynn. I would like to know why you think we’ve not seen a multidisciplinary approach to solving the problem of so-called mental illness. Why is there seemingly little or no interest in the areas of soft psychology, philosophy, sociology, religion, history, and even literature and the arts? 

Whitaker: A great question. I think we need a rethinking that involves all those things, philosophy, an understanding of history, an understanding of literature and arts. That is what happens when you broaden into this multidisciplinary understanding. You get a different vision of what it means to be human than is present in the Diagnostic and Statistical Manual. Of course, the image you get of humans is that we’re very emotional creatures, we have difficult times, we have ups and downs and it’s not like we’re in control of our emotions all the time. Even psychosis can be seen as part of the human condition.

I couldn’t agree more that this is the sort of approach that we need to embrace or incorporate into a new narrative. Under our current disease model put forth by the American Psychiatric Association with its DSM, problems arise within the head, there’s something wrong with your chemistry and something wrong within the individual. When we look into these multidisciplinary approaches and we talk about the social determinants of health, we’re talking about things like food, exercise, shelter, equality, and all the things that we know are important. We’re talking about the environment because we know that human beings are responsive to their environments and we’re talking about creating better environments that help people stay well.

Now, this person is asking why isn’t that story incorporated into the mainstream narrative of the disease model. Because, very simply, the disease model was invented by the American Psychiatric Association because that was a model that gave it authority over this domain of our lives. That was a model that turned them into medical doctors in white coats, and that’s an image of branding that has great value.

The drug companies also love this model. The drug companies can’t sell drugs to provide shelter. They can’t provide a drug that provides food, nutrition, exercise, and socialization. So you have these two strong forces, a medical discipline, medical guild, that wants to maintain this disease model, and pharmaceutical money pouring into it.

It also feeds into this idea there are magic bullets out there that can make us better than well, they can alleviate all sorts of problems. We as the public have been conditioned to think that pills are the answer.

Moore: While you were talking, I couldn’t help but think about the articles that we share from our global partners in the Mad in the World global sites who often write and apply their cultural lens which is very different from the Western-centric lens. They are often talking about these issues in a much less medicalized way and it is fascinating to see how different that can be when a different cultural lens is applied. 

Whitaker: This is one of the things in terms of our growth that has been so important. We now have 15 affiliated websites in 15 other countries. They come from Latin America and Europe, and now we have one in South Asia. Now there are two things to recognize about that.

First of all, you have to say, why are these affiliate sites springing up? It’s because the disease model is failing in every country after globalization of that disease model. The DSM was promoted not just through Europe but to Latin America, to Asia and so on. There is this growing grassroots resistance.

But the other thing goes exactly to what you’re saying. We can learn from each other, we can learn from what they’re doing in India, we can learn from what they’re doing in Norway, and we can learn from what they’re doing in Brazil. The sharing of information across our affiliate sites, across cultures, is a way to give readers insight into the many possibilities for rethinking these things, and seeing how other cultures have done it, taking inspiration from them, and learning from them.

That’s one of the things that Mad in America is now providing, and one of our real initiatives in the coming year is to further this exchange of information among all sites.

One of the things Mad in South Asia is working on right now is looking at the long history of traditional practices for treating psychosis in India. This is of great interest because when the World Health Organization did a study of schizophrenia outcomes, where did they find the best outcomes in the world? In rural India, which was still practicing these traditional practices. That’s an example of what we can learn from this Mad in the World network.

Moore: A question from DB who is asking about the biopsychosocial model. They say psychiatry insists it practices a biopsychosocial model, and so often expects the public to accept that as a given. But do patients report the same? Has there ever been a big study on psychiatric patients ranking the emphasis placed on bio/psycho/social in their experiences of psychiatric treatment? 

Whitaker: The biopsychosocial model is basically a branding message from psychiatry. It’s a way for them to say, oh we’re not just pill prescribers. As much as anything, it’s something they say to themselves to feel good about what they do, because they know that there are psychological aspects and social aspects. But really, going back to the 80s, they started calling themselves psychopharmacologists, they said, we’re going to be prescribers of pills and we’ll leave this other stuff to the psychologists.

If you listen to patient experiences, over and over again they tell about how there’s little interest by psychiatrists in their psychology, little interest in social issues, and little support for even exploring them. Of course, in the United States, you get like 15 minutes with your psychiatrist, so they’re basically pill reviews.

Moore: A question from Larry, who says, has your work resulted in any kind of a vision for what mental health care in America or across the world could become if it were devoted to making people well? How would it finance itself? What range of practitioners would it include? What range of treatments would they use? What benefits to society might accrue? 

Whitaker: Well, if we organized ourselves around a narrative that that did incorporate our understanding of human beings through literature, art, religious tracts, and we also understood that there are social determinants of health, then of course, we would have to do a couple of things to organize ourselves around that narrative. One, if someone was in distress, we’d have to think about how can we improve their environment. In what way can we provide support? But even beyond that, you’d have to say as a society, how do we better organize ourselves as a society to nurture the health of our citizens? It might be in terms of helping them engage socially, find meaning in life, improving equality, better housing, better food, better exercise, and so on.

I think the question is, will we ever have that? I don’t know, James. In terms of society rethinking itself, capitalism is a powerful force. Capitalism is about making money and providing opportunities for funneling money to certain people in positions of economic authority. There is a sense that our economic system is at odds with a society that nurtures mental health. Are we going to get rid of capitalism? I don’t think so.

That also goes to this question of financing. Our current psychiatric system generates huge profits. It is, though, largely funded by the government. For example, in the United States, if you look at spending on psychiatric drugs, about 60% is funded by the American government through Medicaid and Medicare. The rest is mostly funded through private health insurance that people are paying for. The problem is how do you finance a form of care where you’re not making a profit from it?

Now, if you could have a government that said, okay, let’s fund respite houses, or let’s fund medication-free care and let’s do so because it will save us money in the long term, that would be great because then you can make an economic argument for such change. So for example, if you can have this sort of good care right from the beginning that focuses on psychological and social determinants of health, and helps people get back on track and not become chronic mental patients, that’s a great savings, right?

Moore: This question from Laurie is along similar lines. Laurie says do you honestly think psychiatry could ever change to become an industry that truly helps people in society as a whole? 

Whitaker: Here’s the problem in psychiatry today. To become a psychiatrist you go through medical school so you adopt medical thinking, and you adopt a medical identity and you’re invested in that. Now, you can want to help people, you can be a very caring person and go through that process and you can choose psychiatry for that reason, because you want to help people, and you want to help them get their lives back. The problem is, and again, I keep going back to this narrative, it’s not just a medical problem. It’s sort of a whole living problem.

What psychiatry would have to do is rethink itself. Rather than have authority over this domain of our lives, they’d have to give up their position as the leader of this whole story. Because right now, as the medical specialty, they’re on top of this whole pyramid we talked about of psychologists, sociologists, and so forth. They are the ones that, when the media calls up someone, they call up psychiatrists. Will they give up that power, that domain, that authority, that sense of self? That’s really tough. It’s tough for people who go through medical training not to see themselves at the top of that perch.

You know, we have a younger generation coming through that is more humble about being a doctor than before. More aware of a need for humility. There are more women doctors now in the United States so that old image of the male doctor that we all know is diminishing. I hope I don’t get in trouble with this, but I think the younger generation, and also women professionals, are more willing to share power. Could we move to a place where psychiatry sees itself as a part of a power-sharing arrangement? That’s the hope.

The thing that we’ve learned about mental disorders is that the brain, of course, is so complex and mysterious, and of course, the brain is attached to the body. You have to have humility about that to ask what’s going on with people who are depressed. What’s going on with them when they’re mad? What’s going on when they’re psychotic? That humility so often says we don’t know what’s going on, and therefore we have to be open to saying there might be a lot of different approaches. Remember, medical training is about saying “we know.” Psychiatry needs to adopt this position of humility saying “we don’t know, and how can we join with others in creating this sort of holistic system?” It’s a big ask. But that’s the hope.

The post Robert Whitaker Answers Reader Questions on Mad in America, the Biopsychosocial Model, and Psychiatric History appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/12/robert-whitaker-answers-reader-questions-part-1/feed/ 32 https://www.madinamerica.com/2023/10/may-cause-side-effects-radical-acceptance-psychiatric-drug-withdrawal-brooke-siem/ https://www.madinamerica.com/2023/10/may-cause-side-effects-radical-acceptance-psychiatric-drug-withdrawal-brooke-siem/#comments Wed, 25 Oct 2023 10:01:43 +0000 https://www.madinamerica.com/?p=250580 Brooke Siem discusses her experiences of being medicated with antidepressants as a teenager, her withdrawal from a cocktail of psychiatric drugs and her debut memoir, May Cause Side Effects.

The post May Cause Side Effects–Radical Acceptance and Psychiatric Drug Withdrawal: An Interview with Brooke Siem appeared first on Mad In America.

]]> Brooke Siem is a writer, speaker, and advocate for the safe de-prescribing of psychiatric drugs. Her work on antidepressant withdrawal has appeared in The Washington Post, the New York Post, Psychology Today, and many more. She is also an award-winning chef and Food Network Chopped Champion.

In this interview, we talk about her experiences of withdrawal from a cocktail of psychiatric drugs and her debut memoir, May Cause Side Effects, published in 2022 which is one of the first books on antidepressant withdrawal to make it to the mass market.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

 

James Moore: Brooke, welcome. Thank you so much for joining me today for the Mad In America podcast. I’m thrilled to get the chance to talk with you.

Brooke Siem: Thank you for having me.

Moore: We’re here to talk about some of your experiences of the mental health system and polypharmacy, experiences which are beautifully captured in your book, May Cause Side Effects, published by Central Recovery Press in 2022.

Your memoir is fascinating because, at the very time that you were making the decision to reduce your psychiatric drug burden, you were also making major changes in your life. I’m sure we’ll come on to talk about some of those experiences but to get us underway, could you tell us a little bit about you and how it was that you first got involved with the mental health system?

Siem: This was in 2001 and the timing is important for context as the world was a little different then. I was 15 years old and my father had suddenly passed away. When I look back now, I don’t see someone who was going down a terrible path. I wasn’t suddenly into drugs or hanging out with the wrong crowd, my grades didn’t tank, but I was different than I was before. I was very stoic. I was a serious ballet dancer, so the mantra of ballet is to smile through pain, and so, my reaction was concerning to the adults around me.

I was taken to a child psychologist who was objectively terrible. After a few sessions, it was clearly a pretty bad match and I was not interested in cooperating because she broke my trust early on. She called my mother one day, I didn’t know this at the time and said, “I’m recommending a psychiatrist. Brooke doesn’t need a psychologist, she needs a psychiatrist. I’m diagnosing a depressive and anxiety disorder and recommending medication.” At the time I was 15, but I was still protected by HIPAA laws in the state, so my mom had no context and so she just did what she thought was the right thing and took me to this child psychiatrist.

At my first appointment, I was given a prescription for a psychiatric drug. I don’t remember which one. I think we started with Prozac and then moved on likely to Zoloft since those were the two that were approved for use in children and teens at the time. I had obvious physical reactions to both drugs and so, in the end, we ended up on a combination of Effexor XR and Wellbutrin XL, neither of which were approved for kids and teens at the time and still aren’t.

Moore: I was so sad to read about the impact that losing your father at such a young age had on you, and I couldn’t help but be frustrated that the response to your grief seemed to be the desire to medicate you and medicate you quickly. Looking back now, how do you feel about that?

Siem: That old adage of ‘if you know better you do better’ comes to mind. I think that is the case for my mom and me and we have lots of conversations about this. I hold no resentment towards her or the choices she made because I know that she was just doing the best she could too and she was also grieving. But what happened then and is still happening now is that there’s absolutely no time given for kids. We want them to experience so little struggle and for some reason, we think that if we don’t intervene in the struggle early, somehow it’s going to derail the rest of their life. But I think what we’re doing there is intervening and derailing the rest of their life because we’re not allowing them to learn and build resilience and feel what it feels like to be uncomfortable and understand that that’s going to ebb and flow and how do we get out of that. Everything is so reactive.

For me, that was the real impact. It’s affected everything from the obvious things such as the way I was able to build resilience and understand my own mental, emotional, and psychological strength, how I self-soothe, my curiosity, what I wanted to do in the world, my jobs, financial stability, and my relationships. Literally every single aspect of my life was deeply affected, but it was so insidious.

I always think of this metaphor of when you’re flying an airplane, if you get off by just one degree and if you give it enough time, you’re going to end up very far away from your destination. That’s what it felt like. It felt like such a small choice at the time, but it made such a huge impact.

Moore: You share in the book that you had suicidal thoughts quite a long time after starting on the drugs. I think it’s brave to share in such an open and honest way and I hope it’s okay to read a short quote from the book.

You say, “Nearly a decade and a half after making a decision that seemed so small, so obvious at the time to go on to antidepressants at 15 years old, I found myself staring at a patch of New York City sidewalk from 30 floors above contemplating the biggest choice of all.”

Did you feel that those thoughts were because of a particular diagnosis or did you feel it was because of the situation you found yourself in?

Siem: Neither honestly, I just coexisted with those thoughts. I was never frightened by them and it never occurred to me to call the suicide hotline. All these campaigns, I just felt like they were for somebody else, and somehow it didn’t resonate with me at all. I don’t entirely know why that is.

I think at the core of it, two things were true for me. One, I really did not want to be alive, so why would I reach out to help myself or ask for help because at the core I didn’t want to live. At the same time, my thought process was what could they do? How is talking to a stranger going to help with the fact that I am fundamentally broken?

That is where the narrative of mental health and the cultural meanings of these things and the whole it’s not your fault mantra snuck in. It completely removed my responsibility to help myself in any way, and it taught me that nothing was my fault. People don’t like to hear that, but at the end of the day, we are all at the center of the universe. It’s how we all view the world. I am the hero of my own story, so it stands to reason that I have some control. It doesn’t matter what the outside influence or the diagnosis is, you are still in control of your own life. But I abdicated that power very early on because that’s what was taught to me through others’ actions.

This suicidal ideation was as common to me as looking at a tree and saying, “Oh, that’s a tree”, and so I never felt alarmed by it. It just felt like who I was. I only started to feel that maybe there was something not quite right about this when I started to do the math on how long I had been feeling that way in conjunction with how many antidepressants I had been taking. At some point, the light bulb just went on and I thought, I shouldn’t be this depressed on this many antidepressants. Something was going on, and there was just a hint of curiosity there to say, “Okay, well, clearly something needs to change”. At the time though, I just thought I needed to switch to a different antidepressant.

Again, I had fully bought into the narrative that this was hard science and that it was as effective as Advil for headaches or insulin for diabetes. So I just thought that maybe I needed to change pharmaceuticals, not change who I was and my perspective.

Moore: It’s so difficult for people to be honest about having thoughts of hurting themselves because if you admit that to a professional, there’s a high likelihood of being involuntarily committed. I think your honesty in discussing that part of your experience is really helpful for others to understand.

Siem: I wasn’t seeing any traditional therapist and I wasn’t seeing a psychiatrist. I kind of intuitively knew to lie about it if I was asked, but my strategy was instead just to make jokes. It wasn’t that I was never expressing things, I just did it in a socially acceptable way, and that felt like letting a little bit of pressure out of the balloon as needed.

Moore: You describe in the book the many ways the drugs were affecting you, and at one point you calculate that you’re taking 42 pills a week. It’s just staggering numbers of pills. There are combinations of antidepressants, drugs for hyperthyroidism, and drugs for gastric issues which presumably are a consequence of taking the antidepressants in the first place. You talked there about getting to a point where you thought I’m taking all these things and I don’t really feel much better for it. Was that the trigger point for you to start to think about coming off?

Siem: Yes, that was the moment. I have a little habit of quantifying things that feel too big for me to cognitively understand. I’d come home from work at the bakery I owned and do some rudimentary math on all sorts of things. I had calculated the number of days I’d been alive and the number of days that had gone by since my father had died. I had taken a bunch of life expectancy tests online and averaged the results to find an approximate date of how long I was supposed to live. I had all these numbers, and I started looking at them and then I also calculated the number of pills I take and all these things. The scale of these numbers started to hit me, which kind of was the purpose of the exercise.

The thing that really stood out was that I had taken more capsules than the number of days I’d been alive, and in a significantly shorter period. Also, I was reaching this weird little milestone in my life. My father had been dead at that point for 15 years and I was 30, so I knew that I was about to go to the point of my life where I will have had more time without him than I ever did with him. That also means that because I was medicated pretty quickly after he died, I will have spent more than half of my life on these powerful psychiatric drugs than not.

Furthermore, the only frame of reference I had as an unmedicated person was as a 14-year-old kid, I was in my 30s and I was on the same cocktail of drugs. I didn’t wear the same clothes I wore in high school, so why in the hell was I still taking the same cocktail of drugs every morning? There was just something about that that just didn’t make any sense to me because I knew I wasn’t the same body. My brain wasn’t the same, so if the science was sound why hadn’t it adjusted over time? That was the question that put me on this path.

Moore: Then you go on to describe your foray into the wonderful world of withdrawal. I think you saw a psychiatrist who recommended that you stop your first antidepressant, Effexor, pretty much cold turkey. People who’ve had the luxury of knowing about withdrawal can take steps to reduce slowly. But you didn’t know about that so you went straight into this unknown territory. Around the same time, you were getting ready to be on a major cookery show in the U.S. and you were planning a year traveling around the world to work. Tell us what that time was like for you.

Siem: There was a confluence of things that happened all at once. I was living in New York City, I owned a bakery. I’m a chef by trade and I had sort of drunkenly applied to compete on the Food Network’s show Chopped. I didn’t hear anything back from them for months. Then one day about six months later, they wanted me to come along for a trial.
When they finally emailed me and said you’ve been chosen for the show, I was deep into Effexor withdrawal. It was a bad day and I thought this was not going to work. That was the least of my problems though, because I had also received this completely out-of-the-blue opportunity to travel around the world for a year and work.

I think if most people had received this opportunity, they may have been excited and grateful and wanted it. For me, there was no joy in this opportunity at all. I simply saw it as a binary in that I can either go through with the suicidal plans or I can go on this trip. I thought that my life can’t be the same after this trip, so that was the reason I did it. I didn’t really want it in the way that you would expect. It was more just like it’s this or that, so we’re going to go with the least severe opportunity right now and see what happens.

There were a lot of logistics to make this work, and so one of the issues that I ran into was not being able to take a suitcase of the six drugs I was on at the time around the world. Some of the places I was going to don’t allow you to bring any kind of psychiatric drug into the country. I wasn’t necessarily going to be able to get a reliable substitute in the middle of Cambodia, that’s a recipe for disaster.

I had about six months before I was supposed to leave, and so I did what I was supposed to do, the commercials say to go see your doctor. I went to a psychiatrist this time, not my GP. I saw her and she was unsupportive. She told me if I had any withdrawal symptoms, it would be maybe feeling like the flu for a few days. At that point, I was on the lowest dose of Effexor on the market, 37.5 milligrams. She was saying, “Well, I can’t prescribe you a lower dose”. There was no talk of a compounding pharmacy, the term hyperbolic tapering didn’t even exist in our language at that point.

She did prescribe Prozac, and said that take this instead, she was talking about half-lives and saying, “If you take the Prozac then it’ll help bridge the change”. I told her that I was trying to get off these drugs because I knew that I needed to discover my baseline. I still thought that I just needed to be on a different drug. But I said how are we going to know what I need to be on if I don’t spend some time without anything, because my only frame of reference is being a 14-year-old, some 15 years ago.

I thought why would you prescribe another psychiatric drug that I then have to get off of, this doesn’t make any sense to me. My father had been on Prozac for a short time before he died and he hated it. I thought to myself if there’s any sort of genetic component to how this drug is processed then that doesn’t bode well for me. I didn’t know what I was about to get into but I said screw that. I just stopped taking the Effexor and that’s when a book began, but I didn’t know it at the time.

Moore: That was one of the parts of your book that most affected me because I’ve been through a difficult withdrawal experience. If you go online and look at the descriptions of withdrawal, you’ll see a list of physical symptoms including nausea, head shocks, and flu-like symptoms. You read that list and it doesn’t actually look that bad, you think to yourself I can tolerate that.

However, when you go through the experience, that list of symptoms does not do the experience any justice. But you capture it beautifully in the book. What’s not talked about often is the effect of withdrawal on your thinking processes. The chaos that your mind is in, the random rage that comes out of nowhere, the sometimes deluded thoughts that you get. The questioning, am I mad? Is this really happening to me? Am I going to act on some of these strange thoughts I’m having? You did an incredible job of capturing the maelstrom going on in your mind when you’re going through those early stages of withdrawal.

Siem: Thank you for saying that. I wrote the book from that perspective intentionally because I was in severe withdrawal for about a year, and it took about another year to come out of it and feel steady in the world.

What I realized was how in the world is anyone going to understand this or even identify it if they can’t somehow get close to experiencing it? I was very intentional about that because it allows people who are going through it to be able to say, yes, I understand that’s me, but I’m not alone. I didn’t have that and so in some ways, this was the book I wish I had had when I was going through withdrawal. The more prescribers read it, the more family members or caregivers read it and can have some idea of what their loved one is going through, the better everyone is going to be able to navigate it. It’s written in a very intentional way to create that effect.

Moore: There’s a bit in the book that I enjoyed reading where it dawns on you for the first time that you’re free of the drugs after all those tough times. You are taking scuba diving lessons and you have to fill in a consent form which says, “Are you presently taking prescription medications? You say, “For the first time in my adult life I get to write no, in bold letters. I feel a twinge of something like pride swell within me. I did it not with much grace or any dignity, and I’m still a mess, but I did it.” Reading that bit of celebration made me smile.

Siem: Recently I was getting my brain scanned for some research kind of for fun. I don’t know if that’s fun for other people but I’m very interested in coming at this from both the research side and also the psycho-spiritual side because I think they’re deeply connected. So I have this cap on my head and it’s filled with all these 19 little nodule things and they’re putting all this goo in my hair and scratching my skin to make sure the electro-conductivity is right and they’re just asking me all these routine questions at the same time. One of them is are you on any prescription drugs? It was another moment of being able to say “No, I’m not.” It’s been seven years and the answer is still no.

Moore: I think it might give people a sense of the gravity of the experience that people still many years, sometimes decades afterwards still think with pride that they achieved getting off the drugs. There aren’t many situations in life that you can say that about.

A few months ago you were a guest panelist on one of Mad in America’s online discussions about psychiatric drug withdrawal, and you talked of using radical acceptance as a way to manage and cope in very difficult times. That’s also mentioned in the book, and I like that concept very much. I wondered if we could talk a little bit about it. What does radical acceptance mean for you?

Siem: I have to give Tara Brach credit for that phrase. She has a book called Radical Acceptance and I definitely borrowed it from her and have learned a lot of the concepts from her too. I think radical acceptance and radical self-awareness go hand in hand. It’s this idea that we have to fully accept what’s going on at any given moment, especially when it’s painful. It’s only when you can finally accept that and stop fighting it that I think you leave room for healing to begin. Also, it just gets a little easier to handle if you can almost make friends with the pain in a lot of ways. The trick for me is I find that somehow it’s never about the pain, and this applies to physical pain or emotional pain.

In the moment, at this point, I know I can always handle it and I’ve learned to dissociate a little bit from it in a way where I’m more of the observer as opposed to experiencing it. Even with physical pain, I find that I can almost get into a state where there’s this kind of wall between what I could call the soul or the spirit and the body experiencing the pain. If I get myself on the right side of that wall, then I still feel the pain but somehow it doesn’t feel quite the same way. It’s a very difficult thing to explain. I don’t think there are any words that will ever fully encompass it, but it allows for a little reprieve.

It’s never about the moment even though we think it is. It’s about the fear that it will never end, that is where real pain comes from. We have evidence, all of us in our own life that we have handled every single thing that has come at us. The fact that we are all here today on this planet, in this one moment, in the only moment that ever truly exists proves that we have handled literally everything that has come at us and literally every moment where we didn’t think we could get through it. It’s not about the moment, it’s about the fear of things never getting better.

If you can somehow dissociate from that, pull back and radically accept the moment you’re in all the pain, then let it do what it’s going to do, let it process however it’s going to process. That’s when we actually can start to let it go and let the pressure release a little bit and start to get the validation that nothing is forever. When you realize that nothing is forever, then things start to flow and the pressure of pain can release.

Moore: I can’t remember who it was that coined the phrase, ‘This too shall pass’, and it always sounds very glib, but if you hang on to the thought that I am not stuck like this, then you know that change is possible. Also, there’s something about trusting yourself. Trusting your body to know to find a way through those difficult times and trusting your mind to sort out the turbulence. If you can trust your body and not get bound up emotionally and add more energy into an already chaotic system, I think that can be helpful for some people.

Siem: Right. I think so much about that and for me, in withdrawal, it was about trying to put as much space between the withdrawal reaction and my reaction because those things got blurred. I mean, facing whatever it was, speaking it out loud whatever the thing was, somehow if I just brought it all up into my conscious awareness, it would sort of defuse the situation. If I was having really bad intrusive thoughts, if I could just put a moment in between and break it somehow, it would help.

For me, the intrusive thoughts were so scary because they were violent and made me feel like I was going to hurt someone or myself. But the second I started speaking it out loud or writing it down, it was kind of like showing the ghost itself in the mirror and it got scared and went away. Sometimes I felt like I was doing that pretty constantly, sometimes journaling for an hour or so to get it to calm down. But speaking it out loud defused it and I think that’s when the radical acceptance and the radical self-awareness had to come along. I just had to be very honest with myself and say that right now you can’t pretend that this isn’t happening, we need to talk about it, we need to face it. I had to find safe people to do that with or even just talk to my dog or a piece of paper.

Moore: The praise for your book has been off the scale and it is completely understandable why. I’m sure that having written this book, people reading it and are messaging you, left, right and centre asking for advice. How do you approach speaking to people about their experiences?

Siem: A lot of it depends on what they’re asking me. The first thing is that I don’t work one on one with people in any sort of therapeutic way or even really an advisory way. There are some fantastic individuals who do that. I sort of tried it and just realized this is not for me, this is not how I want to contribute to this cause. The thing for me is that I find that asking why and getting answers is the best route, at least for me, to healing.

If people come to me, I just try and provide as many resources as possible. If they ask questions about my personal story, I’m happy to answer. Then just to give them tools because, at the end of the day, it’s each individual that’s going to take themselves through the healing process so I can’t drag them there. But I can give as many tools as possible. I keep up as much as I can on the latest research and what’s going on, so I have the tools to give them.

Whenever people reach out to me, it’s somehow exactly the same and completely different every time. At the end of the day, everyone’s saying the same thing. They’re all having the same problem, but the way it manifests just absolutely blows my mind sometimes.
Recently I’ve been talking to the parent of a 17-year-old boy who was put on antidepressants. At some point during the pandemic, he started experiencing post-SSRI sexual dysfunction (PSSD). He’s 17, and so he went on a black market to get testosterone because he did a bunch of research and determined that that was part of his problem. He realizes that there’s a problem and he’s angry about it. None of the doctors can help him because they don’t know about the issue. He’s more educated than them on the subject at this point. But what do you do? He’s on the black market getting steroids to try and fix a problem caused by a psychiatrist when he was 14. That blows my mind that the internet allows for 17-year-olds to learn about all this and then try and fix their problem through black market hormones.

It’s just shocking the variety of stories I hear. But as long as they know that they’re not alone and that someone hears them, I find that goes a long way. There’s a balance between understanding what’s going on with you and also having the strength and the sense to then pull away from other people’s pain because if you go online on an internet forum, everyone there is basically talking from the worst day of their life. If you spend too much time there, you’re going to lose all sense of your own compass because it’s so dark there. If people are going to go to peer support groups, I think that they’re a lot better in person if possible. We have a set amount of time and we are talking in person or over Zoom and it’s not just going to doom scroll on a forum indefinitely.

Moore: Was there anything else that we should share with people listening?

Siem: Obviously, I would hope that as many people as possible go and buy or listen to the book because I think that the things people can take from it are just so different and important. Then from a more global level, I think it’s important for people to understand how much pain they’re experiencing and what they’re going through. Again, we’re all the center of our own stories, so it can very much feel like it’s only happening to us, and trying to find a lesson in it can be a very difficult undertaking when you’re in the middle of it.
I think if maybe you can focus a little bit on how by going through this experience you are helping so many people around you because you’re going to get spit out on the other side as someone who is wildly empathetic and who has a better understanding of themselves. That honed inner compass is going to help you navigate the world in a way that resonates with you and will therefore resonate with other people.

If you can just find some way to shift into this as the greatest learning experience you will ever have, even if it sucks and that somehow it’s your duty to bear this and start with radical acceptance and radical self-awareness. That’s when you can start asking the right questions. I think the more you can do that work, the faster this process will go because part of the reason why it is there is to get you to learn, move, and graduate. We have all been anointed with this gift in a way that no one wants, but there’s so much good that can come out of it if you can just buckle up and let the ride take you.

Moore: Brooke, thank you so much. Your book was powerfully affecting to read. I identified so much with the mental chaos that you described so well, the racing, intrusive thoughts, the sudden rush of emotions and urges that can’t be easily explained. Also the feeling of losing touch with yourself as a person, with experiences filtered through this pharmacological lens. I do urge listeners to go and get a copy and read it. I’m so pleased to see how you’ve transcended those experiences and the book is doing so much good for people. It was fascinating to get to talk about some of your journey, Brooke.

Siem: Thank you so much for having me and for all of your great work as well.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post May Cause Side Effects–Radical Acceptance and Psychiatric Drug Withdrawal: An Interview with Brooke Siem appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/10/may-cause-side-effects-radical-acceptance-psychiatric-drug-withdrawal-brooke-siem/feed/ 12 https://www.madinamerica.com/2023/09/embracing-the-shadow-charlie-morley-on-lucid-dreaming-as-therapy/ https://www.madinamerica.com/2023/09/embracing-the-shadow-charlie-morley-on-lucid-dreaming-as-therapy/#comments Wed, 27 Sep 2023 10:01:29 +0000 https://www.madinamerica.com/?p=249745 On the Mad in America podcast, we hear about the potential of lucid dreaming therapy to aid those struggling with post-traumatic stress.

The post Embracing the Shadow—Charlie Morley on Lucid Dreaming as Therapy appeared first on Mad In America.

]]> On the Mad in America podcast today, we hear about the potential of lucid dreaming therapy to aid those struggling with post-traumatic stress. Our guest is Charlie Morley, a lucid dreaming teacher and bestselling author who helps people wake up in their dreams and harness the power of sleep for psychological growth.

Charlie became a Buddhist at the age of 19 and has been lucid dreaming for over 20 years. In 2018, he was awarded a Winston Churchill Fellowship to research PTSD treatment in military veterans and continues to teach workshops for people with trauma-affected sleep. These teachings form the core of his latest book Wake Up to Sleep.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Charlie, welcome. Thank you so much for joining me today for the Mad In America podcast. I’m thrilled to have you on.

Charlie Morley: Thank you. It’s a pleasure to be here.

Moore: We are here to talk about your work, and in particular, the use of lucid dreaming as therapy. Later, we’ll discuss some really exciting research into using lucid dreaming for posttraumatic stress. But before we get there, I’m sure that some listening will know what lucid dreaming is, but many won’t. You are a lucid dreaming teacher, so could you tell us what lucid dreaming is, and perhaps describe the experience a little for those who might not have experienced it for themselves?

Morley: My job is to teach people how to have lucid dreams. So, the first thing is what is a lucid dream? A lucid dream is any dream where you’re actively aware of the fact that you’re dreaming as the dream is happening. So you are still sound asleep, but in the dream, you realize, aha, this is all a dream.

So anyone who is listening and thinks, I’ve had one of those where I was in the dream and then they suddenly realize, Wow, I’m dreaming now. My body is asleep in bed, I’m inside my mind and I’m exploring this three-dimensional hallucination of my psychology. That is a lucid dream. For those who haven’t had that experience, I’d ask them to perhaps think of a nightmare, where in the nightmare, they’ve thought, I’ve got to wake up, I’ve got to wake up. If you’ve ever had that experience, that was actually a lucid dream, too, because the moment you acknowledge the need to wake up, you had indirectly acknowledged you were dreaming. Of course, if anyone ever has had that experience or has that in the future, the first takeaway I’d like to offer is, if you can, don’t wake up.

If you’re in a nightmare, you realize it’s a nightmare and you have that feeling of having to wake up, then don’t wake up. Every time you wake from a nightmare, necessarily, the nightmare has to recur because it’s like a therapy session cut short. In almost all cases, nightmares play a healing role, and every time we wake ourselves from a nightmare, either intentionally or just because the nightmare is so scary, the nightmare recurs. This is why when people say that they don’t have happy dreams that recur, that dream where I had a dinner date with my favorite celebrity for example. Because that was integrated in the moment and it was a wonderful therapy session. But the one where you replayed that trauma or the one where you had a future projection of some threat that may befall you, every time we wake ourselves from one of those, they have to recur, not because the brain hates us, but because it loves us.

It makes me think of when I went to Zoom therapy during lockdown and there were a couple of times when my internet went down in the middle of a session. As soon as the internet went down my therapist, because he loves me, started texting me and emailing me. Not because he is trying to have a go at me but because he wants to get back online so we can finish this wonderful healing discussion we were having. That’s how the nightmares are working.

Anyway, I digress a little bit there but essentially a lucid dream is any dream you’ve had where you know that you’re dreaming as the dream is happening, but you are sound asleep. Then, once you know it’s a dream, you can choose what happens and you realize that if I’m conscious in my unconscious mind, then this is a similar state to hypnosis. It’s like a very, very deep state of hypnosis. You’re right at the bottom of the iceberg in a lucid dream because you can’t get more unconscious than asleep.

So the elevator pitch is that anything you can treat through hypnotherapy, you can also treat through lucid dreaming whether it’s working with confidence, working with PTSD or childhood trauma. Training athletes to be better in their discipline, there is a lot of research on that or whether it’s for spiritual practice. It has a long history in Buddhism, Toltec Shamanism and Sufism. So lucid dreaming is not a new thing at all and it’s got good providence.

Moore: There’s a brilliant TED Talk that you did a little while ago that talks about embracing the shadow and you talk there of the innate healing potential that we all have but can’t necessarily connect to. So is lucid dreaming a possible route to that healing potential?

Morley: Yes, exactly that. It’s like that old iceberg theory of consciousness. It is very outdated and simplistic, but quite a good image to use here. If we think about things like hypnotherapy, maybe some forms of psychedelics, mindfulness practices, shamanic journey and yoga nidra, all of those take a strand of the conscious mind and just dip it down beneath the surface of the water into those upper echelons of the iceberg.

However, in a lucid dream, you are taking that strand from the top of the iceberg and dropping it right down to the bottom, right below the surface because you can’t get more unconscious than asleep. It might take days, weeks, or even months to have your first lucid dream but once you get to that state, there seems to be a profound depth in the unconscious, which you can access.

Moore: One of the many things that you do apart from writing and speaking is that you’re a lucid dreaming teacher. So, if people listening were interested in learning more about how to lucid dream are there some simple things that they can start to do at home that might help them along that journey?

Morley: Of course. It’s a big subject, and there are books and courses on it. But I always like to offer the four “D”s, which are four steps that people can take today to get them on the path to lucid dreaming.

The first D is dream planning. So, decide what you want to do in your first lucid dream. Some people hear this and think, “Wait, how is that the first technique? Surely you should teach me how to lucid dream first.” But this is the technique. The “why” is more important than the “how.”

If you can fall asleep tonight after listening to this and think, imagine if, through lucid dreaming, I can meet my inner child and transform childhood trauma. Imagine if through lucid dreaming I could ask profound questions to my unconscious mind or very practical questions like “What career path should I take” and receive an answer in symbolic form. Imagine if I could use lucid dreaming to work with that phobia that’s been plaguing me all my life in the same way as we might use exposure therapy. I can use that in the lucid dream to possibly even greater effect. If you can fall asleep with a good “why” that’s way more important than all the “hows.”

So the first thing I’d say is to think about what you want to do through lucid dreaming. That question would be a similar question to ask if you had a session with the world’s greatest hypnotherapist. If you had a free session with them today, what would you like to work on? That is basically what you are asking yourself. If I had access to my unconscious mind, and I could heal anything or I could explore any parts of it, what would I choose to do? The answer to that question becomes your dream plan. In the study that we’ll talk about later, everybody had the same dream plan. It wasn’t to meet their favorite movie star, it wasn’t to work on their athletic discipline, it wasn’t to ask what career path should be. It was to intentionally face and transform a trauma or wounded part of their psyche. So that’s the first thing, dream planning.

The second “D” is dream recall because we need to train ourselves to remember our dreams. Some people say that they could be lucid dreaming every night but don’t remember it. Maybe, but probably if you are lucid dreaming, you are going to remember it because it is kind of a peak experience that imprints in memory quite powerfully. Most lucid dreaming techniques are based on knowing the lucid dream environment so well that you recognize it when you’re in it.

So the first thing we need to do is start remembering our dreams. So as you fall asleep tonight or before you fall asleep we need to remove the barrier to entry. The big barrier to entry for dream recall for many people is the belief that some people don’t dream. That is an urban myth, it’s just not true. Everybody dreams every night if you sleep. If you stay awake all night, you’re not going to dream. But if you sleep, you dream, and unless you’ve had a heavy head injury or a stroke or some sort of traumatic brain injury, you will be dreaming every night. Even if you have had those conditions, within a few weeks the brain will rewire itself to allow a dream to occur because dreaming is so important for our survival. Without dreaming, we wouldn’t be able to integrate our wounds and we wouldn’t be able to remember new information.

As the great sleep scientist, Professor Matthew Walker said, “We dream to remember and we dream to forget.” I like to say that we dream to remember, we dream to forget, and we dream to heal. This is the point of treatment. As for how to train yourself to remember your dreams as you pass through the hypnagogic state, that drowsy state as you fall asleep restate over and over in your mind, I have excellent dream recall. Tonight, I remember my dreams. If you do that as you’re falling asleep, it’s a self-hypnosis technique to help you remember your dreams.

The third “D” is dream diaries. Once you remember your dream, don’t forget to write it down. The act of writing down helps us remember things as we all know. Also, the act of writing down your dreams pays homage to them. It tells the mind that this is something important to me. An area of my life that I used to ignore, now I’m bothering to write down into my phone or notebook in the morning. Also, by writing down our dreams, we start to find patterns that occur in our dreams, and that leads us to our fourth and final “D,” which is dream signs.

A dream sign is any part of the dream that can indicate to you that you are in fact dreaming. Most dreams are full of dream signs. For example, talking animals, dead relatives, being in countries you don’t live in, being friends with movie stars, anything that doesn’t happen in your everyday life, but only happens in dreams, that’s a dream sign. By writing down your dreams, you start to note these things. Let’s say you write down your dreams for a week, and by the end of the week, you start to see that you dreamt of zombies twice last week, or at least twice a week I dream of my childhood home, something like that.

Once you start to see those patterns emerging in your dream signs, you are then on the path to lucidity because you can say “Okay, if between now and breakfast I see my dead grandma, I must be dreaming,” or “if between now and breakfast I’m back in my child at home, I must be dreaming.” So you create these lucidity triggers using the perspective part of the memory.

The same perspective memory part of the brain is really well wired. If you owe someone money and decide that the next time you see a cash point you’ve got to remember to get out money. Then you can forget about that. But the next time you see a cash point, something’s triggered. It’s stored and the goal-orientated part of the brain will keep that flashing light on until you see a cash point.

You can do the same thing with your dream signs. The next time I see a zombie or the next time I see my dead grandmother, I know that I’m dreaming and those triggers will go off. You will be in the dream, completely unaware that you’re dreaming and then suddenly you have this moment and think “Whoa, I’m dreaming.” It’s so cool when that happens and most people wake up in the excitement. So my job is to kind of keep people calm when that first happens. Anyway, those are the four Ds that will get people started tonight.

James Moore: The dream diary particularly strikes me as really important. I’m sure that people listening will have that experience of coming around from having a dream and remembering it. But the remembering only lasts a very short time before it starts to evaporate, doesn’t it?

Morley: You’ve got to try and get there before it evaporates. It’s like catching a feather and if you grasp at it, the action of grasping pushes the feather further away from you. So you need to kind of see the feather falling and then have an upturned hand and just allow the memory to be caught by your mindful awareness in the morning. But it’s a muscle that can be trained and will get better and better with time.

James Moore: Is there any sense of what proportion of people spontaneously lucid dream without any effort compared to perhaps the number of people who need some help or direction to start doing it? Is it common?

Morley: Fifty-two percent of people surveyed in America reported having at least one lucid dream in their lifetime. Two Harvard studies show that children naturally lucid dream. Not every child every single night but they concluded that lucid dreaming is a spontaneous natural arising of childhood brain development. So it seems like lucid dreaming comes factory-installed. It’s not something we need to learn how to do, it’s something we need to remember.

Moore: I so recognize that. I’ve got a 13-year-old daughter, almost every morning when I see her first thing she takes great delight in describing to me the dream she’s had. She can describe it in minute detail. She’ll ask me, what did you dream about, and I can’t really remember but her recollection is incredible.

Morley: She’s got a bit of a leg up because at 13 years old she’s pretty much got the longest Rapid Eye Movement dreaming period she’s ever going to have. Adolescence is when you have the most dreaming time, which is why it’s so important to let her sleep in if you can.

Moore: I’d like to come on to talk about a recent peer-reviewed study that you facilitated. It’s fascinating to read. It was undertaken by the Institute of Noetic Sciences in California and it was reported in the journal Traumatology in June 2023.

It’s entitled “Decreased Post-Traumatic Stress Disorder Symptoms Following a Lucid Dream Healing Workshop.” So before we come on to talk about the results, which are pretty amazing in themselves, could you tell us a little bit about the study? How was it undertaken and what was the study looking for?

Morley: There have been literally dozens of studies over the past 20 years that have shown that lucid dreaming is one of the most powerful treatments for nightmares, which are a hallmark of post-traumatic stress disorder. What there hadn’t been so far was a study asking could lucid dreaming treat not only nightmares but post-traumatic stress disorder symptoms in general. So we recruited 55 people. We had 144 people apply, and 55 made it through because there were certain criteria; people had to have chronic PTSD. They couldn’t just have a low PTSD score. I understand this sounds very arbitrary, but there’s a checklist from the DSM-5 that has this series of questions that we used.

So we needed people who had chronic PTSD and many of them were “treatment-resistant” but they were still suffering. At the beginning of the study, we took people’s PTSD scores, so they took the PTSD scale and they also took the nightmare experience scale. So basically how severe your nightmares are and how severe your PTSD symptoms are and the average score was way above the PTSD threshold. As a group, the average was pretty high. This is a highly traumatized group. We then had six days of online training. So this was me teaching the group about guided meditations, nap practices, yoga nidra, which is a form of conscious sleeping and daytime awareness practices. We had videos that people could play in the middle of the night of me encouraging and guiding them through the techniques.

Originally the study was going to be an in-person retreat but then COVID happened so I needed to try and create as close to an in-person retreat as possible. One of the main things you can do in an in-person retreat is utilize multiple wakeups. So these are optional but if you fall asleep and you sleep all through the night, essentially you’ve got only one chance to fall asleep during the self-hypnosis technique and one chance to recognize your dreams. But you can wake people up at multiple times in the second half of the night, once they’ve got all their deep healing, deep sleep under their belt, you don’t want to mess with that. In the early hours, when they’re in these long REM periods, you have multiple chances for people to use the techniques. In the group, very few of them slept through the night anyway. Many said, “Oh I do this anyway, I wake up three or four times actually, this is perfect.” There was kind of a sense of empowerment where I said, “Well, your sleep cycle is great for this study.”

However, the night before the study began, this wonderful guy, Konstantin Koos, who was one of the major funders, asked how many lucid dreams we were going to have in the one-week study. And I had to be honest with him, I said, “Maybe none.” I’ve worked with veterans groups and British military groups for the past seven years, where a group might have up to maybe 50% PTSD survivors or sufferers or whatever they choose to label themselves. if anything. But I’ve never worked with a group where 100% have PTSD. So maybe we’re going to spend the week just doing sleep hygiene techniques just helping them get to sleep. I didn’t know whether we’d have any lucid dreams.

Actually, we had a very high level of lucid dreaming. 75% of the participants had at least one or more lucid dreams in the six-day study. Now, when I do the four-day intensive retreats in person, maybe we’d be around 70% of people would have a lucid dream. But a lot of people would tend to have their lucid dreams when they leave the retreat. A bit like your muscles don’t grow in the gym, it’s afterwards. They have four days of training and might get a little bit frustrated but it’s when they go home and suddenly, all the emails come to me saying, “I had my first lucid dream.”

But it turned out that we had a very high level of lucidity. And I think this is because, in the group some were veterans, some were childhood sexual abuse survivors. Two-thirds were women, and most were either from the U.K. or U.S., with a few from Australia and Europe as well. Everyone was in different boats. You know, we’re never in the same boat. When people say we’re in the same boat, I think, No, we’re not. Looking at the patriarchy and this racist society we live in, ageism and sexism, we’re not in the same boat. But we’re in the same storm if you know trauma. People know that storm. The storm seems to have similar weather conditions, whether you’re a veteran, whether you’re civilian, whether you’re a man, whether you’re a woman, really any person.

So I think the magic was created in the group because everybody knew the same storm and so we had a very high level of lucidity. Not only a high level of lucidity but a high level of what we were going for, which was a healing lucid dream. Out of all the dream plans they could have chosen, they all had the same dream plan, which was to face and embrace the trauma, or explore and send love to a wounded part of their psyche. A lot of the people that we’re working with were survivors of childhood sexual abuse. And there’s one theory that says when you become lucid, you would call out to meet the trauma. You know that the trauma wants to be witnessed, and the fact we have never witnessed it in the safe space of our minds is why the trauma is still there.

So there’s one theory that you become lucid and then call that childhood trauma to come to you. Working with trauma survivors, I felt that that that is way too confrontational. When we tried that before, we were getting people saying that suddenly neon flashing signs would appear in the lucid dream saying access denied. What an amazing sign from the dream warning not to go there. It is very hard to do damage to yourself in a lucid dream. A bit like you put your hand in the fire and it gets pulled out. If you’re in a lucid dream, and you go too far then you just wake up. There’s an ejector seat button in the lucid dream, and it will wake you up if it gets too much.

But what we realized was if you could meet the internal archetype that was wounded by the childhood sexual abuse that you survived, that would be a way in. So most people who are working with childhood sexual abuse made a dream plan to meet their inner child. They became lucid and they would call out their inner child.

The cases varied but in one of the dream reports, a woman did this and there was a little girl who was just crying with her back to her. And she realized that this must be my inner child. This is like a symbolic representation of my childhood. And she asked, “What do I do?” and we said, “Whatever happens, hug and show love,” whether that’s literally a hug, whether that saying loving things, whether that’s sending mantras, whatever it was. In this case, the woman said, “I love you, it’s not your fault”. Then the girl turned around, and she embraced her. As she embraced the little girl, she kind of dissolved into light and the whole dream dissolved into light, and she woke up. It was a very powerful experience.

She was one of the 85% of people in that study who, by the end of the week when we checked their PTSD score again, the score was so low it had fallen beneath the PTSD threshold. They were no longer classified as having post-traumatic stress disorder. 85% of participants had a similar experience. When the scientists crunched the results data it was such an audacious result that they thought there was a problem with data collection. They said this is incredible. So they double-checked and said, “Okay, we still have a problem with data, we’re going to triple-check.” The triple-check came back and they said, “Okay, this data is correct, we have a number of people where the PTSD score is so low that they’re not classified as having PTSD anymore. But could it be just some sort of flash in the pan? Could it be the group energy you’ve been talking about, Charlie, we’re all in the same storm. We need to do a follow-up.” So one month later, everyone took the same tests again, the same nightmare experience scale, the same DSM-5 self-report, and PTSD score questionnaire. And not only had it stayed that low for those 85% of people, it dropped one point below. So it seemed to be getting better with time not getting worse. So that was when we knew we had something to publish.

But we struggled to get it published. This is something I’ve heard people in scientific studies say before and you think, “Oh come on, there’s no conspiracy to not publish.” It’s not a conspiracy, but I think when you get audacious results, the editor of the journal puts their neck on the line. What if you haven’t collected the data correctly? What if there is a problem with the study? So we got turned down for publication by a few places.

However, once the funders and the scientific organization we did it with saw the results, they were so impressed that they funded us for a 100-person randomized control trial, which we completed a few months ago. Once we completed that, the journals that turned us down before were very open to publishing. So I think they just wanted to see, Can you pull it off again? Now we haven’t actually crunched the data on the randomized controlled trial yet but the scientists say the results are promising. So we believe we got a similar result again, although those results haven’t been finalized.

Moore: I’m so pleased that you did find some way to get this published. I’ve heard from others that treatments not seen as mainstream really do struggle if they’re slightly different to what’s gone before. And the results are staggering. Firstly, the number of participants that had lucid dreams during the workshop at 76% is really incredible.

As you mentioned before, one of the standout issues for people who have had a stressful experience and had a post-traumatic stress reaction to it is nightmares. To the extent that I’ve heard people say that, they are frightened to go to sleep at night, because they’re plagued by nightmares. So how did people react when you said, “Part of the therapy is engaging with your nightmares maybe in a different way, or becoming aware of your nightmares.” How did they respond to that?

Morley: Almost entirely positively. When you begin experiencing nightmares, it is deeply pathologized by both the medical system and society. Look at the way we use the word nightmare, if I’ve had a bad journey to come and visit, I’ll say it was a “bloody nightmare.” This is a small thing, but a nightmare is basically a negative thing and if you have nightmares, there’s something wrong with you.

This is just not the case anymore. There’s a great study at Rush University in Chicago, that showed a direct correlation between people who are having nightmares about the traumatic event that happened to them, and how quickly they recovered from the trauma-induced depression that followed. It wasn’t that you had to have nightmares to heal, because nightmares are one of the ways that we can heal, but those who were having nightmares healed quicker. That’s been reported again and again. So this isn’t conjecture, we know this. Nightmares in almost all cases are playing a curative role, and it’s a bitter medicine, but it is medicinal.

I think by just presenting people with that shift of perspective, and then backing it up with the science, you kind of see this collective sigh of relief in the room. I’ve heard this on two occasions, clinical psychologists who said that they are more worried in some cases when a client is presenting without nightmares after a deeply traumatic experience. When they present with nightmares at least it shows that the inherent healing mechanism of the dreaming mind is being engaged. Whereas when it’s not, it could be that the person is deep into repression, and denial. Of course, repression is simply being a safety mechanism with the mind saying we cannot go there, that is just too much to even relive in a nightmare.

My Buddhist meditation teacher got diagnosed with PTSD, almost 40 years after the war zone trauma that led to it. That was when he retired. He was a well-known meditation teacher and was just living on the road teaching retreats constantly for 30 years. Then when he retired and there was kind of space for his psyche to kind of go through the files, he started having these terrible nightmares. He was diagnosed with PTSD almost 40 years later.

He was a perfect example of someone for whom the nightmares are a good sign. It’s showing that after 40 years of holding on to this stuff and repressing it, now you’ve got the time and space in your retirement to kind of release the pressure valve. I remember him always saying, “Thank God now and not death.” And I thought, wow, what a profound statement that he knew that trauma was still in him.

So, in answer to your question, yes, almost all people react very positively, I think, because it’s such a new perspective. And there’s so much science on it. Often people find their nightmare experience starts to drop straight away after they’ve simply heard the reframing of nightmares. It’s such a powerful reframing that people’s frequency of nightmares may increase, but the perceived level of distress from the nightmares drops right off the scale. They think, “Yes, I had a nightmare but I have this new perspective that actually, it’s not so bad. It doesn’t mean I’m unspiritual. It doesn’t mean I’m broken. It shows that I’m healing.”

If you cut your arm, a scab appears. And the scab can be a bit disgusting and can be itchy, and we can be ashamed of the scab. But thank goodness for scabs. If there wasn’t the scabbing mechanism within our body, we’d get gangrene every time we scratched ourselves on a rosebush. So this kind of mechanism of the mind that heals itself is a good thing and I think to offer people that reframe is deeply empowering.

Moore: Thank you, Charlie. I have to say that I like the thought of this as a therapy rather than, perhaps intensive psychotherapy or drug treatment. Because from what I understand, there are other benefits to lucid dreaming. So it’s helpful for insomnia, it’s helpful for daytime focus and many other things too, so I’m guessing the participants as well as addressing their traumatic experiences, were probably finding improvements elsewhere in their lives.

Morley: Yes, everything you just said and also they started having fun. This part of their life, that third of their life where they’re usually asleep, which they’d usually associated with trauma, nightmares, and insomnia. Suddenly, waking multiple times in the night could be used on the lucid dreaming path. Having nightmares meant it was easier to get lucid. Over a third of all spontaneous, lucid dreams begin as nightmares because of course, fear boosts our awareness. So basically scary dreams are easier to get lucid in. And then there’s this reframe that your nightmares are okay.

For someone who has had post-traumatic stress nightmares himself at a younger age, I remember that feeling. I remember eating coffee just to stay awake. I was so young I didn’t really like coffee yet. So I was eating instant coffee from a spoon just to stay awake because I dreaded the nightmares so much. So I really know that horrible suffering, and to be able to flip that and look forward to the night time because now I have tools is something really powerful.

Moore: You mentioned that you’ve done a follow-up study and I guess that’s going to take a little while before it appears in print. But what else would you like to see happen in investigating this work to help people who have had such difficult experiences?

Morley: The end goal is that I would love this to be offered in the same way as mindfulness meditation. Twenty years ago, it was only done by people who are into yoga and Buddhists and hippies, all of which I am. And now it can be offered in the UK National Health Service. I hope that one day the same will happen with lucid dreaming. It is non-invasive, it’s non-addictive, it’s non-medical, it’s free, and you do it in your sleep. I mean, that sounds too good to be true. It’s not. It takes some effort, and you need to learn how to do it. These people in the study gave up six days of their life, but they gave up six days of their life to learn a technique which for some of them profoundly shifted their lives for the remainder of it. So yes, I would like to see this offered in mainstream medical health settings.

One thing that came up from the study was that for many people, lucid dreaming takes a certain amount of effort and not everybody seems to be able to do it that easily. What we found in the study was even those 25% of people who did not have a lucid dream in the six-day study were part of the 85%, whose PTSD score dropped off the scale. Why? Because it seems like just learning to lucid dream, even before you have that first breakthrough experience is such an empowering counterweight to the disempowering energy, the post-traumatic stress display I like to call it as I don’t believe it’s a disorder, that leads to a deep healing.

So that was amazing. The scientists weren’t so keen on that data point, because it kind of messes up the rest of the data. They think, Oh, it would be better if only the people who lucid dreamt had a decrease in symptoms, and everyone else stayed the same. We actually found no, even the people who just tried to lucid dream had a decrease in PTSD symptoms. I think that’s powerful.

Moore: It is and it speaks to what you were discussing earlier about reframing the experience. Perhaps they are not nightmares, perhaps they are paths to healing. In your TED talk you talked about embracing the shadow. When you have seen your talk and when you’ve read the paper, suddenly it makes complete sense that the route to healing is not exactly by facing your fears, but by viewing your fears differently and interacting with them through the lucid dreaming process.

Morley: Absolutely.

Moore: Is there anything we didn’t cover that you think people listening should know about lucid dreaming?

Morley: I think just to encourage people to learn how to do it. This is something that kids know how to do naturally so even if you don’t remember having a lucid dream, your inner child does. I think that lucid dreaming has such a fun element to it because it maybe rekindles this childhood memory that our dreams are fun.

So learn how to do it, there are books, there are websites, there are online courses, there’s loads of stuff for free and I have videos on YouTube. This is open source. You do it in your sleep. You know, people who are working two jobs and trying to provide for kids and stuff often think when will I find time for spiritual practice? When will I find time for the healing? When will I find the free money for therapy? Lucid dreaming isn’t affected by any of those, you do it in your sleep.

Even if you get what would be considered quite broken sleep can be great for lucid dreaming too. The more we sleep, the more dreams we have. But even if you do have broken sleep, that can be good for it. Give it a shot. This is a very powerful modality and it’s free, non-invasive, non-medical, and non-addictive. The worst that can happen is nothing. The best that can happen is you completely transform your life while you sleep. So that’s worth a shot.

Moore: Charlie, it’s been so fascinating to get to talk to you about this. Thank you so much for taking the time to join me.

Morley: Thank you so much.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Embracing the Shadow—Charlie Morley on Lucid Dreaming as Therapy appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/09/embracing-the-shadow-charlie-morley-on-lucid-dreaming-as-therapy/feed/ 3 https://www.madinamerica.com/2023/08/cured-memoir-sarah-fay-giving-everyone-chance-to-heal/ https://www.madinamerica.com/2023/08/cured-memoir-sarah-fay-giving-everyone-chance-to-heal/#comments Wed, 02 Aug 2023 10:01:33 +0000 https://www.madinamerica.com/?p=247979 Author Sarah Fay joins us to discuss why "cured" is such a seldom-used word in psychiatry.

The post Cured: A Memoir—Sarah Fay on Giving Everyone the Chance to Heal appeared first on Mad In America.

]]> This week on the Mad in America podcast, we are joined by Sarah Fay. Sarah is an author, an adjunct professor at Northwestern University, a freelance writer at The New York Times and elsewhere, a certified mental health peer recovery support specialist, and a mental health keynote speaker who’s spoken to audiences across the country about recovery from mental illness.

We have previously spoken with Sarah about her book, Pathological: A True Story of Six Misdiagnoses, which told the story of her twenty-five years spent in the mental health system.

For her follow-up work, Cured: A Memoir, Sarah writes about her recovery from mental illness. She says, “During the twenty-five years I spent in the mental health system, not one clinician mentioned the word recovery. I ended up one of those “hopeless” cases—diagnosed with bipolar disorder, chronically suicidal, and unable to live independently. Yet I recovered. Not remission. Full recovery.”

In this interview, we discuss why “cured” is such a seldom-used word in psychiatry. We talk about the power of finding hope, the peer recovery movement, and much more.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Sarah, welcome. Thank you so much for joining me today for the Mad in America podcast.

Sarah Fay: Thank you so much for having me back. I am just so grateful to talk about mental health recovery.

Moore: We’re here today to talk about your latest book, entitled Cured: A Memoir, and it’s something of a sequel to your 2022 book, Pathological: A True Story of Six Misdiagnoses. Listeners might recall that you were on the podcast last year with Allan Horwitz and Robert Whitaker to talk about that book and psychiatry’s diagnostic manual, the DSM.

I have to say that it’s refreshing and powerful to read a celebration of mental health recovery and it struck me while reading how rare it is that we discuss recovery in mental health. So, to get us underway, could you tell us a little bit about what motivated you to write a book that follows on from Pathological?

Fay: The experience of publicizing my first book, Pathological, was so fascinating because it contains three strands. It’s my story of 25 years in the mental health system. I received six different diagnoses, ended up one of those “hopeless” cases, and was chronically suicidal. I could no longer live independently. So, that’s one strand of the book.

And then, another strand is taking the DSM to task, mainly because I used my diagnoses against myself and I saw them only negatively. But once I learned the flimsiness of the DSM diagnoses and that they aren’t scientifically valid and are rarely reliable, it changed things for me, and I was really angry. That’s the second strand.

Then the third strand is about punctuation. No one really understands that, but it’s my love of punctuation and the reason why I wrote that part was because I learned more and more about punctuation the longer I was in the mental health system. My way of holding on was teaching, reading, and writing.

Because I’d taken the DSM to task, my editor at Harper Collins, my publicist, and my agent even, we all thought we’re going to get so much push-back from psychiatry. We were just ready for it, and we got none. It was almost eerie and it was kind of more of a, “Yeah, we know, and we’re not going to talk about it.”

I felt like Pathological ended before my recovery. I had already been recovered for several years and I just felt like it didn’t tell that story and my story of recovery might be like other people’s. I had never heard of recovery. Not once did one clinician mentioned the word recovery to me in 25 years in the mental health system.

One of my diagnoses was anorexia and I was told that I would have it for the rest of my life. My parents were told I was going to die from it. Now, granted, this was in the 1980s. Then eventually, my diagnoses included generalized anxiety disorder and major depressive disorder. Then I was told I had ADHD and OCD and, after that, it was bipolar disorder. Once I received a bipolar diagnosis, I was told that I was going to die 10 years earlier than my life expectancy. I was told that I would cycle in and out of manic and depressive episodes and that I would likely die by suicide. Also that I would never hold a full-time job, it was unlikely I would have a long-term romantic relationship. It was just so dire that now looking back, there was no hope, absolutely none.

So then, I went to a psychiatrist who mentioned a patient of his who had recovered and once that word was mentioned, I thought, “You can recover from mental illness?” And not only did he say that, but he said she recovered and became an executive at Google. I have no interest in becoming an executive at Google but that just seemed to me, at the time, the pinnacle of mental health recovery.

Now, that’s not at all of what recovery is but I wrote the book to tell the whole story because Pathological ends where so many mental health memoirs end, with kind of an acceptance note, like a resignation note. I felt that there is this whole other part and I didn’t want anyone else not to hear the word recovery.

Moore: There is an excellent phrase you use in the book that stuck with me since. You say, “We’ve created a mutually causal situation. The psychiatric condition requires treatment that exacerbates it,” and I think that so well-defines the paradox that struggling people find themselves in.

Fay: And often we reduce it just to medication, and that’s an important point, but for me right now, what I feel is the lack of hope. It’s the absence of hope. It’s the absence of anyone talking about recovery and not just clinicians, because I know some clinicians do but the media too. We never hear about it. The New York Times has never reported on someone who has recovered. Then also publishers, why aren’t they publishing more memoirs like this? Because certainly, people have healed, although I didn’t know that at the time.

I also was very scared to tell my psychiatrist that I wanted to recover because I was scared he was going to say, “Wait, you are a hopeless case. No, not you. The Google executive can do it, but she has otherworldly Google powers,” or something. But I made so many mistakes—there is no right way to recover, but I certainly wanted to share my experience to help other people avoid the mistakes that I made.

So, the first part of the book covers the four “mistakes” that I made and the first one was believing that I had to be off medication. That is a tricky business and it’s a controversial topic, obviously. But for me, I had been on them for so long that my body had become dependent on them. The withdrawal was just too severe and I couldn’t do it, but I thought, wait, if you’re off medication, you’ve recovered. That made sense. You can’t take a psychotropic medication unless you have a mental illness, but the reality is, we have put people on these drugs long-term when they weren’t meant to be, and we have not talked about the dependency aspects of them enough.

The way I see it is, I am still on medication but I never adjusted. It’s just my baseline now. I’m very lucky, I have a low side-effect profile, so I can stay on them, but that was one mistake I made.

The second one was believing I shouldn’t be in therapy but only crazy, and I mean that word most lovingly. People go to therapy, which is hilarious and kind of says what’s wrong with our mental health system, that we actually only help people when they are in a state of distress instead of preventive care. That was one, but the other two beliefs are kind of interesting, which is that I thought I had to be in a romantic relationship for some reason. Again, the single woman often is demonized and ostracized. So, there is the myth of the crazy ex-girlfriend or the crazy girlfriend and she has to be broken up with and return to singledom where she belongs.

Because we don’t know what mental illness is, we don’t define mental health either. So, I was going down all these paths, trying to figure out “what is mental health?” It turns out you do not have to be in a romantic relationship. I am not in one and I am ridiculously happy.

The fourth one was that I had to be very, very social. So many diagnoses focus on whether or not you are ultra-social. I am a very solitary person. I love to be home reading and writing, maybe streaming here and there and with my cats. That’s a rocking Saturday night for me.

So much of recovery, which I didn’t know and I wish I’d known, is that recovery looks different for every person and it is a journey or an experience of deciding what kind of life you want given who you really are. That was so important for me to learn, but I do want to save people from those four mistakes if I can.

Moore: If it’s okay, I wanted to talk a little bit about diagnosis. Now, of course, diagnosis is a little bit like medication in that there are differing, sometimes polarized views about whether it’s helpful or not. Some people say are helped by having a diagnosis and it connects them to people with similar diagnoses, but many others say they feel limited or defined by it. I think you mentioned that your first diagnosis was anorexia in eighth grade, and then you went through many more as time went on. In the book, you say that each diagnosis became a self-fulfilling prophecy. So, I wondered if we could talk about that.

Fay: Definitely, and just to preface it, I always use the example of the autism community, because they’ve done something so important and miraculous, given our mental health system. They’ve embraced that diagnosis. They have championed each other with it, they have created the neurodiversity movement, which has said that it’s really the world’s job to not just accept but appreciate the way they see the world, hear the world, and interact with the world. That’s remarkable, and I feel like in many ways, diagnoses wouldn’t be a problem if there was an upside. You’re never told yes, you have major depressive disorder and…

I think that for me, what I did was because I received my first diagnosis so young, and things were difficult, my parents were divorcing, and I was going to a new high school. I was terrified and incredibly sad, and I had a terrible stomachache. I was not “not eating”, I couldn’t eat. I had a pediatrician diagnose me who basically looked at me, looked at the scale, heard that I wasn’t eating, and said, “She has anorexia,” even though I didn’t have three of the key characteristics, which are counting calories, weighing yourself obsessively, and believing you’re fat. I didn’t have any of those, but because I was so young I really started to equate emotions, primarily negative emotions, with diagnosis.

So, I never learned about the human experience. I feel anxiety every day. I am recovered and I have panic attacks, that is part of my human experience. Now, I was very ill and there is such a thing, in my mind, as mental illness. Again, that’s controversial as well, as a lot of people don’t believe you can recover because there is no such thing. There is no question that I was ill, but once I started to associate something doesn’t feel good, or even going into crisis with a diagnosis, that became my go-to, and it was always negative. Again, there was no positive aspect of it.

As you said, I think some people feel relief, they feel connected to people, but I did not have that experience.

Moore: You’ve got two books that are crammed full of references to many studies that show that diagnoses largely are tools for professionals rather than things that we should personally identify with. Looking back now, do you feel bitter about those experiences and about being labeled that way, or do you see it as part of the journey?

Fay: I was very angry at first and so I think that Pathological is a saucy book. The New York Times hailed it as a fiery manifesto of a memoir. Cured is a very different book. There is my story but I also tell the history of the recovery movement, which I had never heard, and I want other people to know that we have been recovering from mental illness for at least two centuries, if not longer. That needs to be out there and really talked about more.

Then within the book, I give people the tools that I use. Now, it’s not medical advice but the techniques and tools that I used that helped my recovery. I guess now, what I feel is there is no upside to me being angry at the mental health system at this point. The upside is me changing it. That’s the upside and I do feel like this is my purpose. Cured: The Memoir is being serialized and I’ll explain what that means. It’s available for free on Substack, so, basically online right now. We will eventually sell the book but now, I want to make sure as many people as possible get the information that’s in it and we can use that because it’s free.

We can use this as an opportunity to tell the media and publishers, and the mental health system, that recovery is important. So, my goal is to get 30,000 subscribers by November 2023. So, everyone listening, tell your friends. It’s free to subscribe at curedthememoir.com. Just put in your email address and you can read all available chapters of the book, and then I will also send you a new chapter every Saturday. You don’t have to worry about catching up because I’ve written it so that each chapter stands alone and you get everything you need. So, you never have to feel like you have to go catch up.

If we believed in recovery it would change everything. It would just be a domino effect, because if there is recovery, then the whole biomedical model comes into question. I was told you will have this for the rest of your life. This is because of this neurotransmitter or that synapse. It’s calling it all into question. If we turn to the recovery model, which by the way, the US government has been calling for us to do since 1999—I couldn’t believe that when I learned that. So, when the Surgeon General’s report on mental health came out, they were already asking us to move away from the biomedical model and toward a recovery model that says yes, people can recover from mental illness, even serious mental illness.

In one of the most recent chapters in Cured, I talk about how mental illness is often likened to heart disease and diabetes and that comes from a good place because it’s trying to say mental illness is serious, we have to take it seriously. The problem is, it’s also letting people believe that it’s lifelong. One of my readers said, “My father has diabetes and they just did a study, and someone recovered from Type I diabetes, which they said you cannot recover from.” So, even that’s starting to happen. Even the metaphors are breaking down.

Moore: I think it’s really brave and bold to have published this way and to allow people to read it for free. I did enjoy reading about the recovery movement. You write about the work of Judi Chamberlin and many others. You refer to some of the important studies that are powerful but are buried in obscure journals that are sometimes difficult to access, It’s amazing how people that were talking about recovery were almost seen as extremists, just for daring to suggest there might be a path through this.

Fay: I learned the term “clinician’s illusion” and it refers to psychiatrists and mental health professionals who say, “Recovery isn’t possible. My patients never recover.” The clinician’s illusion is basically a way of saying, yes, your patients never “recover” but you only see the sick patients. So, once we’re well, many of us tend to leave the mental health system. So, of course, they think no one recovers, and it’s simply not the case.

Moore: Continuing with the theme of the recovery movement, in the book you talk about your interest in peer recovery work. I believe that you are training as a peer support specialist. Is that right, and if so, could you tell us about what that entails?

Fay: I became a certified peer recovery support specialist and that was an incredible experience. After I recovered and even while I was writing Cured, the one thing I worried about is what if I relapse, what will happen? Is there such a thing as relapse? No one really knows. I did worry that I could get sick again and when I did the peer recovery certification, I knew I wouldn’t because that connection with other people and knowing that my purpose is to help others on their journey to recovery. It just changed it for me and I just knew, no, that will never happen.

Now, I shouldn’t say never. That doesn’t mean I will not experience periods of depression or anxiety. As I said, that’s part of the human experience, but that was an incredible journey, just because I was on it with other people who had also experienced recovery in such different ways. There were veterans who were doing the program through the VA, and there were people of different races and sexualities, genders, and everything. That was wonderful to see.

One of my facilitators, her name is Jean, is an amazing woman, but she had gone through foster care, had also struggled with addiction and had been homeless. I was just so in awe because I struggled to recover so much with all the advantages that I had and it was just so impressive to see all these people coming from so many different backgrounds and life situations, and making their way to recovery. It’s just amazing.

Moore: I have to say that one of the areas of interest, particularly here in the UK, but I’m sure also in the US as well, is the power dynamic that exists between a doctor and a patient. There is an assumed power there that they have some kind of hold or control over you and it strikes me that peer support deals with that issue because you’re talking to people at eye level. You’ve had sometimes similar experiences and the conversation isn’t just limited to half an hour in their swanky office with their drug-sponsored pens. It’s very much a human-to-human, ongoing interaction and that’s so powerful and important.

Fay: The most powerful part about it is that they don’t know what you’ve gone through but someone can say, “This is what happened to me.” The best thing I learned was peers never give advice, ever. That’s something very different from what we get from other people, but we don’t give advice. We just listen and when appropriate, if asked, we might share an experience that we had. There is so much respect for every person’s individual experience.

So, every person’s journey is going to be different and I think that mental health professionals try to do that and some are very successful at it, but often, I felt like I was just another patient. Here I am in the waiting room, I come in and I don’t look that different from the person who was just sitting here. “The seat is still warm” kind of a feel, and that’s just not the case with peers.

Then, there are so many offshoots to it that I didn’t know about in terms of the recovery movement and what they’ve given us in addition to peers. So, warm lines, where if you are feeling you do need to talk to someone, you can call a warm line and unlike 9-8-8 or 9-1-1 in the United States, which we don’t recommend anyone call anymore, for the most part, there is no risk that the police will be sent to your house unless you are clearly a danger to yourself or others.

So, things like warm lines, they gave us those and they gave us just anything that has to do with beyond managing symptoms. So basically, anything that leads us to start talking about recovery and that a diagnosis is not necessarily a life sentence.

Moore: The sense that I got from reading both books, Pathological and Cured, was how much healthier it would be for all of us if doctors were willing to say we just don’t know what the issue is here, but we can work together on a journey of discovery.

Your two books, to me anyway, were a journey of your discovery about yourself and the way you felt about things. Discovery about the evidence or lack of it behind many of the things you were told. Then the discovery that cured for you meant a whole different array of areas in your life. It wasn’t just medical, it wasn’t just social or psychological. It was many things. I love the way that you bring all those threads together across the two books.

Fay: Now that you said that, I was thinking, I wonder if I had just written Cured, that the book Pathological may never have happened. But you’re right, it’s really if we can just talk more about recovery.

One thing that comes up sometimes is people say it’s cruel to give “false hope.” I think it’s cruel not to let people know that recovery is possible. Now, it doesn’t mean that everyone will recover, but everyone must be given the chance and I was not. So, for that, all I want to do is rectify the situation and get this talked about on morning talk shows and the news, and really where it reaches people.

One thing I learned as an author is that if you want to reach people, television is the way to do it. The media is just harping on how we’re in a mental health crisis, there is nothing we can do. There is something we can do. We can talk to especially young people about recovery and the statistics are staggering. Fifty percent of adolescents never experience a second depressive episode again. That’s half of them, and how many of them are being told that?

Moore: Also, the fact that recovery means different things to different people, doesn’t it? So, you mentioned that you still have panic attacks. I do too. I consider myself recovered from my problems, but if I have a panic attack it’s because I’m in a stressful situation, it’s not because it’s a recurrence of an illness, or I don’t believe that for me, anyway. So, I think if we can encourage people to realize that recovery isn’t necessarily being symptom-free, but recovery might be thinking about your life differently and sometimes having some challenges, rather than being ill in some way and not able to cope.

Fay: I almost don’t like the word recover because it assumes you are going back to something. I think many people, what they do is they have a mental health experience and then they want to go back to the way they were. It’s impossible. We can’t time travel. You would be changed by that experience and one thing I had to learn was the difference between personal recovery and clinical recovery. We used to only have clinical recovery and that was when my psychiatrist tells me what recovery is, which means I have no more symptoms. That’s impossible, because anxiety, depression, and rumination, all of those are part of the human experience.

Someone could look at my life and say, “She is really isolated.” I get very panicky in crowds. I avoid stores at all costs. So, someone could say, “She has social anxiety disorder,” and again, I’m not minimizing when these conditions become acute. They are severe and can be disabling, I know what that’s like, I know what it is like to experience that.

At the same time, I think we’ve reached a point in our society where we’re very judgmental of ourselves and our lives. We want to be this Google executive ideal and really, I had to come to terms with a lot of the things that are unattractive in a woman in America right now. This is very much culturally based but what I’m supposed to look like and desire and want, versus what I do, and I don’t even really like going out to dinner. I prefer not to. Again, those are the things we’re fed, especially through commercials and advertising. These ideals I think can undermine a lot of people, especially those who have mental health conditions.

Moore: And the fact is that those preferences and dislikes for things have been around for thousands of years before some elderly white men got together in a room and decided to designate criteria for mental illness. So, if you think of it as just something I don’t like doing rather than being told because you don’t like it that’s a mental illness, there is a massive gulf between those two states of thinking about the world.

Fay: There is, and I think a really important part of this for me was learning about my mind and how the mind works. Again, I present all of this in the book as well, but evolutionary psychiatry became fascinating to me. Psychiatry looks for what’s wrong and how to fix it, and evolutionary psychiatry looks at what’s wrong and why there might be a reason for it. It was fascinating to me to consider for instance that often when I would get anxious and revved-up, which some saw as mania and sometimes it did tip over into that, I would then experience a depression. An evolutionary psychiatrist would say, “That’s your body returning to homeostasis. You’ve been up, so it has to come down.”

Even binge-eating, that is really how we’re designed. I mean, the brain is designed to keep us alive and that’s it. It does not care if we’re happy. It doesn’t care if we’re succeeding in our job but really, it’s just to perpetuate the species. So, it’s very mercenary, but the other thing I learned was that it’s always looking for what’s wrong. It’s always looking out for danger and it is essentially trying to find out what’s wrong and keep us alive.

So, what I used to see as a problem with my mind, because I was so negative or I was always worrying about everything, and I was always so anxious. It’s not a problem, that’s my brain doing its job. So, once I stopped seeing it as a problem and seeing it as a bad thing, that changed things and then, being able to process emotions—I don’t know if process is quite the right word—but to allow for uncomfortable emotions more than I ever did really helped too.

Moore: Was there anything that we haven’t covered about the book that you really would like to share?

Fay: Just that I interviewed a lot of people, I did a lot of research, and one thing that’s so amazing about being able to offer it for free online is that it’s interactive. So you can go through and read the chapters, but I also have resources for mental health recovery. So, warm lines and emergency numbers. I have little bits that I send out every Thursday about say, nutritional psychiatry. I also have interviews with mental health professionals. So, I have Larry Davidson who is with the Office of Recovery at SAMHSA and the program on recovery at Yale, and others.

The other thing I feature are stories of recovery from other people. I didn’t want this just to be my story. So, you can go on there and read about amazing people who come from different walks of life. The other thing that I just did was I recorded the audio of the whole thing. So, if you are a fan of audiobooks, all of the chapters have audio. Most of the interviews do, as well. So, you can find those on the website.

I hope everyone will visit and help me send that message to psychiatry, to all mental health professionals, and especially the media and publishers that we do want to learn more about mental health recovery. We want more research into it, not just the biomedical model, and I think what’s interesting too is that same facilitator that I mentioned in my certified peer recovery specialist training, Jean, said, “The biomedical model saved my life and the recovery model gave me back my life.”

I am not a psychiatrist, I am not a researcher. So, I don’t have the answers to that, but as a patient, as an ex-patient now, as someone who has recovered, all I know is that we need to give people a future because, for me, suicidality was all about not feeling I had a future. So, that’s the extreme that we get to and that’s what’s most important. So, please do subscribe, Cured is free to read and I hope that we can just change this mental health system.

Moore: Sarah, thank you so much for joining me today. I enjoyed reading Cured. It describes some intense and painful experiences that you endured, but it’s ultimately so hopeful for people to read that mental health recovery is not only possible. According to many people, it’s probable, actually.

Fay: One thing I do provide on there as well are statistics that should be readily available online that I had to dig through, but these statistics of recovery which are astonishing.

When I was 12, someone should have said to my parents, “There is a 62% recovery rate.” What if you went into a physical doctor’s office and you received a diagnosis, and then they just never talked about your healing, ever? Imagine that.

I hope every conversation about mental health includes the word recovery, every appointment, every physician’s visit that that word is mentioned and recovery rates are mentioned.

Moore: Sarah, thank you so much.

Fay: Thank you.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Cured: A Memoir—Sarah Fay on Giving Everyone the Chance to Heal appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/08/cured-memoir-sarah-fay-giving-everyone-chance-to-heal/feed/ 15 https://www.madinamerica.com/2023/07/mental-health-podcasts-force-for-good-in-contested-field/ https://www.madinamerica.com/2023/07/mental-health-podcasts-force-for-good-in-contested-field/#comments Wed, 19 Jul 2023 10:01:46 +0000 https://www.madinamerica.com/?p=247457 Researchers from University College Cork discuss their research on the benefits of listening to mental health related podcasts which indicates that podcasts improve mental health literacy, and reduce stigma.

The post Sharon Lambert and Naoise Ó Caoilte—Mental Health Podcasts: A Force for Good in a Contested Field appeared first on Mad In America.

]]> According to Edison Research, there are more podcast listeners than ever, with 64% of the US 12+ population having ever listened to a podcast. With over half a million active podcasts available, more time is being devoted to mental health discussions. However, little is known about the motivation and experiences of people listening to mental health related material in podcasts.

Joining us today are Dr. Sharon Lambert and Naoise Ó Caoilte from University College Cork in Ireland, who have studied the motivations and experiences of mental health-related podcast listeners. Their recent paper is entitled “Podcasts as a Tool for Enhancing Mental Health Literacy: An Investigation of Mental Health-Related Podcasts,” and it appears in the journal Mental Health & Prevention.

In this interview, we discuss the importance of mental health literacy and ask if the need for honest mental health experiences is being met from the recording studio rather than the consulting room.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

 

James Moore: Sharon and Naoise, thank you so much for joining me today for the Mad in America podcast. Before we get to talk about your fascinating study, could I ask you both to introduce yourselves and say a little about what you do at University College Cork?

Dr. Sharon Lambert: I am a psychologist and academic researcher. I research and teach applied psychology at UCC and my areas of interest are the relationship between psychological trauma and traumatic experiences in a very broad sense. So, that includes things like poverty and social exclusion, and how that impacts thinking, learning, and behavior. I’m particularly interested in how people design and deliver services so that everybody can use them and that came from working in the community with socially-excluded groups.

Naoise Ó Caoilte: I am a recent graduate of the Master’s at University College Cork in applied psychology and mental health and it was there that we started this piece of research. Sharon and I became interested in exploring some of the podcast listeners’ experiences. At the moment, I work for the Health Service Executive here in Ireland, as part of the primary care psychology team.

Moore: Why were you interested in studying what podcast listening might be doing for people’s knowledge and beliefs about mental disorders?

Lambert: I suppose it came about as a conversation. I have appeared on mental health-related podcasts before and my experience of being a guest on those podcasts was that people would contact you afterwards and say “I heard you speaking on such and such podcast, I’ve been struggling a lot, and it was the first time that I’d ever connected my social context like poverty. I’d always thought that maybe it’s just something fundamentally not good enough about me.”

So, I suppose there was a bit of sadness around that that the most socially excluded people are the ones who don’t have access to that information.

Then I saw a newspaper article that was criticizing podcasts. It said, “Is this a good thing? You have all of these people online talking about mental health and people who have mental health issues listening, is that a good idea?” I thought, well, my experience of it is that it has been positive but I don’t know, because we don’t have the research. So Naoise and I were chatting and he listens to a lot of podcasts so, we came up with the idea and went with it.

Ó Caoilte: As a student at the time studying psychology, I was also on placement, working with families in the foster care system here, and what I took away from listening to podcasts during that time was hearing people’s lived experiences. People who may have experienced coming through the care system or people sharing their mental health stories. That gave me an insight into the therapeutic process and the psychological world that you maybe don’t necessarily get from books, for example.

So, from that sort of professional development point of view, I found podcasts to be really beneficial for me.

Moore: Could we talk a little bit about the approach you took for the paper and your results?

Lambert: As Naoise said, we had a great conversation about podcasts and what I was hearing about what people were getting from podcasts, and then Naoise brought this extra perspective, “Actually, it’s not just people who are struggling who are gaining from it. It’s also students, potentially, getting professional development.

So, we were thinking about all of the different groups that are listening to podcasts and what they might be getting from them. Naoise had a look at the literature and he found that there was almost nothing there. So, we created a survey; Naoise worked really hard in getting that survey out and over 722 responded.

What was interesting was that every time I do a survey for research, I always put in this box at the end that says, “Any other comments.” No one ever fills it out and if they do, they might say, “That was a stupid effing survey,” or something like that. It’s never really that meaningful, to be honest, but I was persistent and put in that little comment box, hoping that somebody would fill it in.

We were blown away by the comments, the amount of them, the level of engagement with that particular section and the quality of the information that people gave about their experiences. I can talk about that in a minute if Naoise, perhaps, you might want to come in and talk about the survey findings and the statistical analysis that you did.

Ó Caoilte: So, we asked participants about their demographic profile: education, annual household income, et cetera, as well as their motivations for listening to mental health podcasts, and their personal experience with mental health. We asked whether they’ve accessed mental health services before, and then, finally, what their experiences of listening to mental health podcasts were.

The results are quite interesting when you look at why people listen to podcasts. We found that above all, it was out of a desire to learn about oneself and to learn about mental health more generally. When you do a piece of research like this, you’re always interested in what are the differences in people’s responses based on their demographic profile. One of the patterns that we began to identify was that for participants in lower educational brackets, i.e. those who also tend to have poor mental health literacy and knowledge of mental health, they reported using podcasts to learn about themselves and their mental health much more than their more educated counterparts. Whereas those in higher education brackets reported using podcasts for entertainment much more.

This was quite an interesting and promising result, I think because it maybe shows that those who need it most are taking the most away from listening to podcasts. That was a trend that followed throughout the whole paper, even down to when we asked people about their experiences. Those in the lower educational bracket, as well as I believe those with lower annual household income, reported that their experiences were more based around learning new information and skills.

When we asked them about their experiences, the most rated statement was that they learned new information and skills. After that, it was that podcasts help normalize problems and foster connections. What I see in that is that normalization of problems is really a destigmatization and creating connections is maybe creating a validation and a sense of community amongst listeners. There is so much rich data within that qualitative piece that really brings the statistics alive as well.

Lambert: As Naoise said, the highest-rated item in the survey was for new information. One of the criticisms of podcasts was, is there a danger that people who have mental health difficulties are sitting at home, listening to podcasts, doing some kind of therapy on themselves, and not seeking professional support. Is that dangerous?

So, one of the items asked was, do you use podcast listening to process difficult emotions? The results showed it was not an issue. So, that kind of ruled out that concern. As Naoise said, the statistics he outlined are super interesting because what it did show is that people who are from lives of lower socioeconomic status who do find it difficult to access services and who are often shut out from education as well, they are gaining a huge amount in terms of mental health literacy.

They were starting to realize that these struggles that they were having, lots of people have them too, and that it did make them feel more connected and especially in the data around COVID. Lots of people were very isolated and that they felt quite connected to particular podcasters or some of their guests.

What people liked actually was a mix of guests. They liked the mix of hearing a professional by education speak about a particular difficulty or challenge. Then somebody with lived experience might come on and say, “I experienced a traumatic event. This is the impact it had on my life and these are the different kinds of barriers that I had in terms of accessing support, and then this is how I did on my recovery journey.”

So, that real raw sense of reality because sometimes when we present lived experience in professional environments, we bring on people who are successful in their recovery and it’s often presented as “This is amazing and this is how easy it is, and everything is great.” What you don’t often hear in those contexts is the fact that it isn’t a linear journey, that there have been lots of setbacks and that there are lots of barriers. One of the things with independent podcasts is that people are, I guess, not restricted in terms of being really honest about what worked and what didn’t work.

So, when we looked at the qualitative data we came up with five overall themes and they were around accessibility (and accessibility means a couple of different things which I’ll come to in a minute), mental health literacy, some potential pitfalls, reassurance, and lived experiences.

So, in terms of accessibility, it meant two different things. There was the practical element. So, the podcast content is free and I can access it any time that I want without geographical, financial, or transport barriers. The second point around accessibility was actually the language being used. So, people are speaking to me in a way that I understand and if I don’t understand it, I can listen to that episode two or three times, until I do understand it.

Moore: That’s so important, isn’t it? It’s theoretical but the paper says that if people attend a service, they might get a crisis response and the medical professional might be just responding to their symptoms. There is no time to talk about social factors and all the other things that might have led them there, but podcasts allow people to absorb that information in their own space and time.

Lambert: A big feature of that accessibility was the language being used because you often had lay people, people with lived experience who would say, “I have experienced this and what that means is that,” so there wasn’t that assumed knowledge that perhaps sometimes happens in other consultations. When people do go to appointments, they can be embarrassed to say, “I don’t understand what you’re saying and I’ve never heard what that word is,” so they can just sometimes nod and agree and then leave, and particularly people in addiction services feel a lot of shame and stigma. So, if you’re there and somebody says something and you don’t know this, it’s another thing to feel ashamed about. So, being able to access that information was important.

So, one of the themes was potential pitfalls. Now if you were being academically rigorous, you wouldn’t have included this theme at all. There were five criticisms out of 722, where somebody said a potential negative. Naoise said, “Look, it has been said. It’s important to these people so let’s report those potential pitfalls.”

So, one person said that they had obsessive-compulsive disorder and what had happened for them was a podcast had become part of a compulsion and they had to listen a lot and that person was a professional. They said that they were concerned about non-professionals being involved in podcasting, but of course, that’s their bias there in terms of their professional training. Can you remember the others, Naoise?

Ó Caoilte: It was one or two around what you mentioned there about podcast hosts and guests not having professional expertise and then, potentially the issues with podcasts not being regulated, and the concerns of, I guess, individuals who worried about misinformation, particularly in the context of mental health where it’s important not to spread misinformation.

So, they were valid concerns and while there were few, they were worth looking at and worth reporting because even though in our sample there were only five or six people, I’m sure that out there, there are more who are concerned.

Lambert: I think it was three people that said they were concerned about professionals not doing this stuff, and that it might be a non-professional, whatever that is. One of the quotes was, “I do think with a lot of access to professional services and increased availability of podcasts, there is a risk that people can take a podcast host’s advice as seriously as they would take a health care professional’s advice.” So, I suppose the problem there is assuming that the health care professional’s advice is always right, all the time, and sometimes it’s not, but actually, the data did not indicate that that’s what was happening.

What it did indicate was that listening to podcasts wasn’t making people not look for help in different places and spaces. It actually was increasing help-seeking behavior. The other quote here is, “I am less hard on myself. Podcasts have encouraged me to open up and speak about my issues.”

Moore: In the paper, it says that research indicated that mental health literacy is positively associated with help-seeking behaviors and negatively associated with stigma, shame and negative attitudes towards mental health. That’s so important, isn’t it, because podcasts, I guess, give a non-medical space for people to discuss really uncomfortable and difficult thoughts or feelings, without necessarily feeling that things have to be labeled from a medical standpoint. They can talk in purely human terms, can’t they? So, I can see how mental health literacy might seem like it’s a medicalized thing, but it isn’t, it is reducing stigma, making people more likely to seek help if they need it.

Lambert: Yes, there is a lovely quote here from one of the participants, and it says, “While I’ve suffered from depression for 10 years now, I sometimes still struggle to describe it to family and friends. Listening to peers sharing their journeys has helped me gain both the language and confidence to speak more about my lived experience.” I mean, we could be here for hours, James, reading out some of the quotes because they were just so powerful.

Ó Caoilte: What you mentioned there, Sharon, about the lived experiences, it ties into people questioning the expertise of podcast guests. I think the addiction services know this and have known this for a long time, which is that even though they might not have professional qualifications, people with lived experiences or peer support workers can be just as valuable to the therapeutic and the recovery process as professionals, and in addiction recovery programs, peer support is a huge part of it.

What we’ve found was that our participants who were listening to lived experiences were getting a sense sometimes of hope, sometimes of connection, and sometimes of community when they hear somebody. A really important aspect of that as well is that they hear somebody who looks like them or who sounds like them, and maybe is from the same socioeconomic background as them. When they hear that person share a story that resonates with them, that has a therapeutic power in and of itself.

Moore: That’s so important, and as you mentioned earlier that there are virtually no barriers to accessing these podcasts. They are easy to get hold of and easy to consume in a time that matters for them and they can listen multiple times. Or, if they are struggling in the middle of the night, there is somebody comforting there that they could listen to.

The point about misinformation, I find really interesting, because, as we know at Mad in America, there are examples out there of professionally-produced podcasts where there is misinformation being given. Maybe they are talking about chemical imbalances or maybe they are talking about areas of mental health as if it’s settled science, when it isn’t really. Equally on the other side, we are aware that there are paid influencers out there that might be covertly funded by pharmaceutical companies.

So, I guess misinformation is a concern but part of me also thinks that talking about the full range of experiences and possibly considering what might or might not be misinformation, and the freedom of podcasts as a platform to do that is probably quite a healthy thing too, isn’t it?

Lambert: Yes, because if we think about humans as biopsychosocial beings as we are, we exist within a social context. I do believe that it’s shifting and changing in psychology, not as fast as probably some people would like, but there is more of an increasing understanding of social context. For example, how poverty is a driver for mental distress and how that should be responded to. That’s not a psychological disorder, it is somebody who is deeply distressed because they are living in a really difficult situation and maybe at risk of homelessness or in homelessness. So, their distress is appropriate for the situation that they are in. That conversation is happening. It’s shifting, it’s changing, and I know folks in Mad in America have been talking about it for a very long time and would prefer those conversations happened faster.

What brings it back to the podcast is that people are perhaps interfacing with different disciplines and models of understanding mental health. I know that you would say within Mad in America, there are particular diagnoses that are not helpful, and I would agree with you on lots of that. Then sometimes I worry about that because there are people who receive a diagnosis and for them, it’s a relief. Then I think for me as a psychologist, I have to be really careful that you don’t come along and say, “That thing that you have, there is this big group of people who don’t believe that that exists,” and that can be quite devastating.

So, how you can manage that in a way that is helpful is through conversations around different perspectives. So, some people would have a very biological understanding of mental health, some people would have a very psychological understanding of mental health. I’d probably fall more on a social understanding of mental health, but I need to understand all of them. I think for people who might be having difficulty, once they start to improve their own mental health literacy by access to this information then what they do is they start to say I’m learning a lot and I want to learn more. So then, they will start to listen to different perspectives and they will learn about things they might not have learned about before, like the social determinants of health and how poverty is one of the biggest predictors of addiction and poor mental health.

So, I think that podcasts do create that space. I do think that what they are doing is saying here are a host of multiple different perspectives. Then sometimes we underestimate people’s ability to be able to sit back and say, that’s really interesting, I haven’t thought about it like that. Where does that fit with me? For me, what matters is what you need in order to go on your recovery journey, what works for you.

Moore: People can find experiences that resonate with their own experience, can’t they, which is so important to not feel isolated and to feel connected. There are people out there who’ve had broadly similar experiences and it was interesting to learn how they thought about it or dealt with it, or haven’t dealt with it, or whatever else. So, that kind of menu approach of having a range of views to choose from is so important, I feel.

Ó Caoilte: On that piece about feeling isolated, like you mentioned James, I did a quick search on the qualitative data earlier today and the words “not alone” together come up over 120 times. That was one of the major takeaways under the qualitative theme of reassurance and validation, was that sense of feeling not alone and not isolated in your mental health issues. People kept saying things like, “I’ve realized that everybody struggles,” or “I’ve developed compassion for myself and others because I’ve been able to understand my struggles in the context of maybe my past experiences.”

Moore: I couldn’t help but identify myself with so much written in the paper, firstly as someone who runs a podcast, but secondly as someone who has had mental health struggles and got into podcasting precisely because I felt alone and disconnected, and couldn’t easily leave the house. So, I really do value the space that podcasts can fill that professionals couldn’t do even if they wanted to. They wouldn’t have the time or resources available to do that.

It’s a brilliant and fascinating piece of work that you’ve both done together and with your co-authors. I wondered if you had any thoughts about whether there are further developments of this work. Is there more that could be done with looking at the role of podcasts in helping people come to terms with their thoughts, knowledge, and beliefs about mental disorders?

Lambert: Currently, I have a master’s student who is looking at the role of podcasts in probation clients. So, these are people who have experienced difficulty with the criminal justice system. Where that came from, actually, was an Irish-based podcast called The Two Norries. The hosts of the podcast were both in recovery from addiction, but have had significant experience with the criminal justice system, including periods of imprisonment.

Like you, James, their podcast emerged during the first lockdown, because the support structures that were available to them to maintain their recovery were gone. So, they were worried about themselves and they were worried about their community because they are from an area of socioeconomic deprivation. So they had this idea to set up a podcast, which they did in Timmy’s shed in his back garden.

What happened then was there were no visits allowed into the prisons. So the prison service started playing The Two Norries podcast into the cells. Then the psychology service in the Irish Prison Service started to notice that people were developing a language that they probably wouldn’t have gotten if you gave them something to read, a more formal produced document from a health service, for example. They were saying, “This is really interesting because people who are in custody now are coming, looking for the psychology service and they are using words like I experienced this difficulty and it was a trauma, and it might be linked to my addiction and other social problems that I’m having.”

So, Dr. Reagan from the Irish Prison Service liaised a lot and continues to liaise with The Two Norries podcast around the impact that it’s having in the prison service. So then, that led me to think about people when they’ve left custody and they are now linking with a probation officer. So, my current master’s student, Sally Condon, has interviewed probation officers about do they think podcasts are a useful tool for probation officers.

She’s just finished her analysis and she is writing up her dissertation. It’s not published yet but what was interesting was it is really similar to Naoise’s findings. She deliberately didn’t read Naoise’s paper in case it would impact how she might think about themes. So, when she came to me and said, “These are the themes that have come from the data,” it was so interesting because they are very similar to the themes that come from Naoise’s paper.

So, I suppose, primarily what they notice, probation officers, was that people who were struggling with mental health and addiction difficulties, and that was leading them to involvement with the criminal justice system, they were turning up to meetings and they were having entirely different conversations now. So, the chaos that they were experiencing in their personal lives was starting to make sense, and once they had access to the information, then it became this thing that was in their awareness and that they could do something with.

Ó Caoilte: Something that we saw reflected in the results was clinicians and healthcare professionals who were reporting using podcasts in whatever healthcare setting they are in or using them as resources for clients. So, that’s something that’s reflected in the literature as well, not to a large extent, but we discuss that and feel that there would be a lot of value in speaking to professionals, as well as speaking to people like yourself, podcast creators, to get their perspective and experience on that. I think that would give another side to this research as well, which I think would be really meaningful.

The other thing that we felt would be very valuable is in some way getting a quantitative measure of the impact of listening to mental health podcasts and maybe measuring mental health literacy using a scale. That would be an experimental design, I guess, something maybe at the end of the road.

Moore: Before we come to the end of this, Sharon, you mentioned the comment box that you put at the end of the survey. We need to do that on podcasts too. Was there anything else related to the paper that you think important to share with the listeners?

Lambert: I suppose the most important thing that we heard was for the vast majority podcasts are a positive thing. They are positive in terms of being available, the language that’s being used is understandable, the varying experiences and perspectives that people are exposed to. So it’s not just one particular perspective or one model or one life experience, that it’s a whole vast range of all of the different things that can go on in this space and then that is contributing to the development of mental health literacy.

Knowledge is power and people can make decisions for themselves when they have access to knowledge, and people are feeling less alone, they are feeling more connected. Their experiences are more normalized. It is decreasing stigma. It is increasing help-seeking behavior, and they are just an incredible resource for people.

Ninety-nine point nine per cent of the experiences are just incredibly positive and I see a quote that just popped up in front of me here, “It demystifies mental health emotional issues. I learned so much about myself and others. I find it’s helpful at building empathy when you hear about all the people’s troubles and stories.”

So, not only did people increase their compassion towards themselves, they increased their empathy for others, and that’s important too that when we increase our self-compassion for ourselves, then we also have empathy for others, because that’s what will make you a happy, healthy human being, is being able to love yourself and to love others.

Moore: Thank you both. I am so pleased to be able to talk to you about this because to have podcasts for mental health validated in this way is really important. The sense of connection they bring, the demystification that goes on, that the kind of discussion around the margins of what you might hear in a therapy appointment or an appointment with a professional. The fact that you can broaden your understanding by listening to a range of experiences is so valuable and it’s a genuinely fascinating piece of work. Thank you both so much for doing it and for being willing to join me to talk about it.

Lambert: Thank you, James.

Ó Caoilte: Thanks so much for having us on.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Sharon Lambert and Naoise Ó Caoilte—Mental Health Podcasts: A Force for Good in a Contested Field appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/07/mental-health-podcasts-force-for-good-in-contested-field/feed/ 36 https://www.madinamerica.com/2023/05/chris-van-tulleken-ultra-processed-people-why-do-we-all-eat-stuff-that-isnt-food/ https://www.madinamerica.com/2023/05/chris-van-tulleken-ultra-processed-people-why-do-we-all-eat-stuff-that-isnt-food/#comments Wed, 17 May 2023 10:01:48 +0000 https://www.madinamerica.com/?p=245567 We are joined by Dr. Chris van Tulleken who talks about the science, economics, history, and production of ultra-processed food. We discuss some of the effects of UPF on our brains and bodies and how the food industry positions UPF to dominate our diets.

The post Chris van Tulleken—Ultra-Processed People: Why Do We All Eat Stuff That Isn’t Food and Why Can’t We Stop? appeared first on Mad In America.

]]> This week on the Mad in America podcast I am thrilled to be joined by Dr. Chris van Tulleken. Chris is an Infectious Diseases doctor at the Hospital for Tropical Diseases in London. He trained at Oxford and has a PhD in molecular virology from University College London, where he is an associate professor.

His research focuses on how corporations affect human health, especially in the context of child nutrition, and he works with UNICEF and the World Health Organization on this area. Chris is also one of the BBC’s leading broadcasters for children and adults and his work has won two BAFTAs. In this interview, we talk about Chris’s new book Ultra-Processed People: Why Do We All Eat Stuff That Isn’t Food and Why Can’t We Stop?

The book takes a deep dive into the science, economics, history, and production of ultra-processed food. In particular, we discuss some of the effects of UPF on our brains and bodies and how the food industry positions UPF to dominate our diets.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Chris, welcome. Thank you so much for joining me today for the Mad in America podcast. I’m thrilled to have you on.

Chris van Tulleken: It’s a real pleasure to be here. I feel like we’ve been meaning to have some sort of conversation like this for several years, so it’s good that the book has catalyzed the discussion.

Moore: You are well-known for so much, your BBC broadcasting, your work investigating the marketing tactics of baby formula manufacturers, and I know you best from your BBC series, The Doctor Who Gave Up Drugs, where you looked at what could be done about the dramatic rise in the use of prescription drugs in the U.K.

But it’s great to be here today to talk about your brand new book entitled Ultra-Processed People: Why Do We All Eat Stuff That Isn’t Food and Why Can’t We Stop? I have to say it’s a fascinating and worrying examination of the intentional shift in our diet that’s happened over the last 70 years or so.

I wondered what made you interested in writing Ultra-Processed People. Did it follow naturally from your work looking at the infant formula market and the tactics used there?

van Tulleken: I’ve got three answers to that question for different audiences and all of them are true.

One is that I’m an infectious diseases doctor and I do tropical medicine. For a long time I worked in humanitarian emergencies, and I saw a lot of infant death because of the marketing of infant food to people who couldn’t afford it. They were people who had no clean water to make it up, and who couldn’t read the instructions to give it properly. That was my first interaction with what was called, in the 1970s, commerciogenic malnutrition.

A lot of people boycotted some of these companies in the 1970s and 1980s when I was a student and so I assumed the problem had been solved. Yet when I was working in 2008-2010 in these contexts, this marketing was still going on very aggressively.

The second reason is that my identical twin brother has lived with obesity for a very long time, and I’ve had a complex relationship with him about it. I found it very distressing and I’ve stigmatized him and harassed him about it for a long time. So part of the journey of the book was untangling that and realizing how I’ve interacted with him about weight and shame.

Then, as you say, it was a very natural extension of the work I was doing around other commercial determinants of health, including the way that companies affect our health. Companies affect our health in good and bad ways; they employ us, they give us goods and services. But many industries have a very significant negative effect on our health and the pharma industry and the food industry are intimately linked.

Once you start seeing things through this prism, and this is most of my academic work now, you start to realize the effects of the relationships that the medical profession has with either the pharmaceutical or the food industry. So the journey to get there was through all that work.

Moore: Could we talk a little bit about the definition of ultra-processed food because it’s not exactly straightforward, is it?

van Tulleken: Well, there’s a very long formal scientific definition that’s been used to try and delineate and study the category of food that we know is harmful. It’s a working definition of junk food, essentially.

But the shorthand way that’s really effective for people is if it’s wrapped in plastic, and it’s got something in it that you don’t find in the domestic kitchen, it’s ultra-processed food. I spoke earlier today to Marion Nestle, who’s a professor at New York University. She’s done a huge amount of work on the food industry, and her rule of thumb is if you couldn’t make it at home, it’s UPF and that’s a pretty good one too.

The nuance to that is, there’s a lot of lasagna out there and lots of pizza out there that you feel like you might be able to make at home, but it’s in plastic, and it might or might not have something weird in it. So in the U.K., a lot of listeners are going to recognize these kinds of fringe foods. Are they UPF or are they not? They have got a very long list of ingredients, but you might have most of them in a well-stocked kitchen, that’s the sort of stuff around the edges. But broadly, it’s stuff with the additives like emulsifiers, stabilizers, sweeteners, xanthan gum, potassium sorbate, and anything like that. It’s all ultra-processed.

Moore: When I was reading the book, I couldn’t help but think that if food labels showed how the food was manufactured, extruded or mechanically recovered or emulsified or whatever, a lot of what we eat might suddenly become less appetizing.

van Tulleken: Palm oil is an interesting example because you’ll see that on many ingredient lists and of course, it is a traditional food. I’ve worked a lot in West and Central Africa, and if you crush a palm nut and eat it, you get this extraordinary spicy bright red oil.

The palm oil that’s in our chocolate spreads, in our peanut butter, in our bread and biscuits is refined, bleached, deodorized, hydrogenated and inter-esterified, in order to take it from that spicy red flavorful oil that spoils quite quickly into an absolutely solid commodity fat that’s interchangeable with anything from chicken fat to beef, soy to butter to any of the other solid fats that we can make out of palm oils. So, yes, we don’t label food accurately. I think that’s fair to say.

Moore: And perhaps even more, there are some pretty unbelievable health claims on the packaging of UPF aren’t there?

van Tulleken: I think it’s a good rule of thumb that if a food has a health claim anywhere written on it, it’s probably ultra-processed. If it’s associated with weight loss or it’s high in fiber or it’s vitamin enriched or has 30% less sugar or will support weight loss as part of a balanced diet that is almost guaranteed to be ultra-processed food.

What’s important to say is that my interest is not in demonizing individual products. In the U.K. and the U.S., 60% of our calories on average come from ultra-processed food. It’s normal for children to eat 80-90% of their calories from ultra-processed food. So having a bit of palm oil in your peanut butter misses the point. Our entire diet is built around these foods that are really about extracting money from us, and many of them are quite addictive, that’s the issue. Worrying about any one thing is to slightly miss the point, in my view.

Moore: Perhaps we could turn to the relationship between mental health and consuming UPF. So, there is some evidence that consumption of ultra-processed food could be linked to issues such as ADHD, autism and depression. We know that UPF affects the microbiome, and it’s not too much of a leap to believe that it could affect our mental health too. So what do we know about that? Does eating UPF change the brain?

van Tulleken: We’re pretty sure it does. So the way the evidence works is that we’ve got some laboratory science about the individual macronutrients and some of the additives that are there, and also to do with the texture of the food.

So we’ve got a lot of really good science on very soft food, dry food and energy-dense food, and that’s typically ultra-processed food. It’s soft, dry and energy-dense because it’s palatable, it drives consumption and it keeps for a long time. So we’ve got this lab data saying that there are lots of qualities and additives in this food that are in these experiments associated with things that might be problems.

Then we’ve got epidemiological data. So we look at population studies, and the great problem for the epidemiologist to solve has been to ask is this just fatty, salty, sugary food? Is this just what we think of classically as junk food? Is the processing important and by processing, I mean not just the additives and the physical and thermal and chemical processing, but also the marketing which certainly drives excess consumption.

So we’ve got loads of epidemiological data now, which makes all these statistical adjustments for salt, sugar, fat, fiber, and dietary pattern. When you control for all those things in your big regression analysis, what you see is the effect remains unchanged in magnitude and significance in almost all of the outcomes.

So the population data associates ultra-processed food with weight gain and most of the research is around that. But we’re also sure it’s associated with all cancers, including some specific cancers, heart attacks, strokes or cardiovascular disease, metabolic disease, like type 2 diabetes, inflammatory bowel disease like Crohn’s disease, dementia, anxiety, depression, and early death. The ADHD links are a bit weak, there is more work to be done there.

How does it drive all this? We’ve got lots of clues and instincts. So it might be molecules like acrylamide, which we think drives brain inflammation, it might be migratory molecules from the plastics, it might be some of the additives directly like some of the colors and the flavorings, or it might be that it affects our brain because it subverts our body’s evolved systems that guide nutritional intake. And it might be it affects our brain because it gives us piles, forces us to overeat, and takes away our control and agency from our diet because we become addicted to it and that leads us into a spiral of anxiety and depression. Or it might be all of the above. I personally suspect it is all of the above.

Moore: There was a fascinating experiment you describe in the book where children were allowed to choose food according to their wishes and they were guided by their bodies to fill in the nutritional gaps in their diet without them even being aware of it.

van Tulleken: This was an amazing study done in the 1920s by a woman called Clara Davis. She set up a nutritional institute with very young children, and they were allowed to choose their diet from 34 different little dishes. So each child at any one meal would get 12 of these dishes, and it included things like raw beef and bone marrow and lactic milk, which is basically thin yogurt. They’d get a little dish of salt, so they could dip things in salt if they wanted, some of the food was raw, and some of it was cooked.

They also got a cup of cod liver oil and this was the nicest detail. There was a kid called Earl, who had been raised in terrible poverty and as he was weaned from his mother’s breast he was essentially adopted by Clara Davis. He came in with rickets, so there are X-rays of him in the scientific papers and a photograph of him. He had bowed legs and really bad bone damage.

He drank a little cup of cod liver oil, of his own volition, even though the kids could choose what they wanted, every single day until his X-rays improved and his bones regained density and his rickets went away. At that point, he stopped choosing to drink cod liver oil and never touched it again.

So if we look at the animal kingdom, animals eat without labels, without instructions, without nutritional guidance, and they do pretty well. They build their bodies very effectively and have done so for millennia. So we have these systems inside us.

There’s a risk in talking about all this that people think that I’m saying that we need to return to a raw diet and eat an attempted paleo diet. Processing of food is really important. So, we’ve talked so far about ultra-processed food. Processed food is fine. We’ve been processing food for well over a million years.

Humans are the only obligate processivores, we have to process our food. Our jaws and our guts are much smaller than other animals of our size. That’s because we digest our food essentially outside of our bodies. We chop it up with knives, we digest it with cooking. So processing is fine and if we eat processed food, most of us should be pretty good at regulating our nutritional intake without an instruction manual. The difficulty that’s been reported since the 1920s is if we eat ultra-processed food, it has been designed in a way that gets around our satiety mechanisms particularly.

Moore: In reading the book, I couldn’t help but be struck by similarities in the way that Big Food operates like Big Oil and Big Pharma. It’s hugely wealthy, it engages in massive marketing spend. It influences consumer groups and even sponsors research that shows its product in the best possible light. So how can we, as mere consumers, make a stand against that?

van Tulleken: Almost the biggest problem that needs to be solved is not one single regulatory action. So, we should, for example, limit the marketing of this food in the way that we limit the marketing of drugs of abuse and tobacco products. But the main thing we need to change is our culture around how we relate to the industry.

So with the pharmaceutical industry, there is at least some understanding that these conflicts of interest within the research drive bias to corrupt outcomes. Now, it still happens and pharma is very skillful at controlling the way we think about our bodies and the treatments for when we get ill.

With food, the food industry has captured everything from the basic research to the charities that inform government policy. So if you think of any charity about human health and diet, particularly some of the activism ones, some of the ones associated with particular diseases, whether it’s cancer or diabetes, they are often funded by the manufacturers of UPF. Many of my media colleagues are funded by these companies, their research is funded and they’re paid directly. Until we disentangle ourselves from those conflicts, we will never solve the problem.

If people get only one thing from reading my book, it’s to understand that all diet-related disease but particularly obesity is commerciogenic. It’s caused by the interests of industry. The pharma industry, we’ve known for a long time, is what we call financialized. So part of the work of activists of the kind that you work with has been to demonstrate that the primary and almost sole interest of these companies is delivering value to shareholders. And yet they pretend to be stakeholders, they say “We’re interested in patients, of course, shareholders need some money, but our primary focus is the treatment of disease and the patient.”

We’ve shown very clearly now that that is not the case with the pharmaceutical industry, the way they price gouge and market drugs and the way that drugs dominate our treatment for illness, the primacy of that biomedical model of disease that all your listeners will be familiar with.

With food, it’s the same, they dominate the ecosphere. We know that they’re financialized in the sense that they are paying less and less tax, spending less and less on advertising, and doing less that contributes to the economy. They don’t build the infrastructure and they employ fewer and fewer people. What they do is they rent seek off their brands, they do share buybacks, they buy cheap debt and pay it to shareholders.

According to some of the ex-industry experts and insiders that I spoke to, they function more like banks that specialize in food and ingredients than they do as food producers. The big bit of the book is my journey to understand that the food supply system isn’t really a food supply system. It’s an inverted money supply system, we are the source of money and our health is commodified in order to extract that money.

It’s not a very complicated hypothesis and it is very testable. If you can make an addictive product at a rock-bottom price, that’s what you should do if you’re a transnational food corporation. The idea is that food made by transnational food corporations, and the scientists that work for them, might interact with our physiology somewhat differently from the food that a parent or a community member would make because they love us and want to nourish us. I mean, it’s not rocket science, is it?

So this is a hypothesis that our grandparents would have been very familiar with. Our grandparents did worry about this, and my mum worried about this. The team in Brazil, who came up with the idea of ultra processing and defined it, all they did was create a definition that we could generate evidence around and kind of prove our grandparents right when they said—emulsifiers in bread, that seems a bit weird.

Moore: There’s a brilliant example in the book of profit over nutritional value where you describe your daughter’s experience with an ice cream in a park where the ice cream doesn’t melt in the heat. Of course, that’s because it’s more commercially viable for these companies to transport this stuff all around the globe if they don’t need to chill it.

van Tulleken: If you leave ice cream in a bowl, it retains its ball shape, there will be a bit of liquid that comes out of it, but it will stay a warm ball of foam.

Now, in my book, weirdly, and I wonder if I feel a bit like this about the pharmaceutical industry, to some extent, they aren’t really the bad guys. We are allowing them to do this. Now, of course, they are campaigning and bringing legal actions and creating the environment in which they can create these monopolies and dominate the discourse and cause all these externalized costs and health problems. But really, it’s the failure of government and doctors and scientists to act as regulators. They are the baddies in my book, the charities that accept the money and launder the reputations and dilute all the activism. They’re the people who could make a different choice.

When you talk to people in the food industry and the pharma industry as well, a lot of the people that informed this book did work for the pharmaceutical industry. Because it was safe to go to my contacts in pharma and say, “Hey, I’m talking about food. Can you just tell me how your company works?” Whereas if you tackle people in the food industry, there’s a sort of dissonance where they feel ill at ease. People in the pharmaceutical industry love slagging off the people who work in the food industry, they feel comfortable doing that. Of course, when you say, “But are you guys doing the same thing? They’ll go, “Yeah, we sort of do do the same thing.”

So when you’re in these companies, many of the people at the companies want to do things differently. And I give an example of Emmanuel Faber at Danone who I believe sincerely wanted to make Danone a company that was better for the environment and better for people’s health. He was removed very rapidly by activist investors.

Activist investors, of course, are not all trying to get oil companies to leave oil in the ground, activist investors are also saying, “We want our money.” And I have some sympathy with the activist investors because they are answerable to me and my pension. My NHS pension will be partly in the transnational food corporations.

So there’s this trap, this loop of kind of late capitalism, where huge asset funds own these companies and drive these behaviors that generate profit at the expense of everything else. The people who can make a choice aren’t the people in the food companies, they’re not in control. Governments can and doctors can choose. We have signed up to obligations to our patients and the population in general, we’re very clear, we are paid not by those people. I make good money working as a doctor, I can pay all my bills, and so we do have the freedom to say, “I’m not actually going to take money from tobacco, alcohol, food or Pharma” and yet we do.

Moore: There’s a neat coming together of the food and the pharmaceutical industry. In the news recently a lot has been jabs for obesity. So you’ve got a food industry that is blaming inactivity, not the sugar content, for people struggling with their weight. Then along comes pharma and says, “Well, we’ve got a jab for that, now.”

van Tulleken: It’s the “Eat me-Drink me” approach to modern life where we say, “We’ve got all this diet-related disease, let’s invent drugs to fix it.” I’m a fan of weight loss drugs, I should say. We should be able to celebrate treatments for lung cancer, while simultaneously saying “Let’s also invest in some smoking prevention and tobacco control strategies.” What we are doing with food is thinking let’s invest billions in drugs that won’t work nearly as well as the celebrities say they do or as the initial trial said they will. No drug in history has ever worked that well.

They do help some people for a period of time lose quite a significant amount of weight. They probably won’t work nearly as well in people who live in food deserts, with very low-income levels, and no financial or geographical ability to buy actual food. These are displaced people and people of color and indigenous communities across North America and in fact, around the world. So, yes, we’ve been so willing to buy these drugs and spend those billions and yet we are paralyzed when it comes to any kind of food corporation regulation. Like zero, there is almost no regulation and until we disentangle the conflicts of interest, we won’t have any regulation.

Moore: I like the fact that the book isn’t telling people how to live their lives or giving a particular diet to follow. It’s more of an informed consent approach, I think, in terms of giving people the information they need to make the best choices for themselves and their family’s health. But, if people listening wanted to start to make changes to reduce their consumption of UPF, are there some small, simple things that they could start with?

van Tulleken: I essentially refuse to give anyone any advice almost about anything. I know nothing about the lives of your individual listeners, I know very little about the lives of my patients, and I barely understand my own life.

My proposal in the book is a fairly straightforward one. You’re part of an experiment you didn’t volunteer for. New molecules and new combinations of molecules are being tried in your food the whole time. You take all the risks in these experiments, the companies get all the benefits. While you read the book, if you’re someone who struggles with this food, continue to eat the foods you struggle with, the foods you want, and the foods you enjoy.

I didn’t realize until I had the experience of eating an ultra-processed food diet for the book. About three-quarters of the way through the diet, I spoke to a scientist in Brazil, Fernanda Rauber, and she just kept saying, “It’s not food, it’s an industrially produced edible substance.” And that night, it was like I’d fallen out of love, and I just couldn’t eat my fried chicken dinner.

That’s sort of what I want to do to the reader is bring them on that journey and say, “Look, speak to the people I’ve spoken to, through me in the book, keep eating the food, and you may find yourself released from the addiction by the end of it.” That method works very well there’s lots of evidence, the Allen Carr and the World Health Organization recommend it as a smoking cessation strategy. Lots of people who have read the book so far, my editors, and my family, have all had this experience of thinking I just can’t eat it anymore. So the book is trying to disgust the reader, I hope, without stigma.

In terms of advice, you’ve got to become a philosopher of your food. I passionately believe if you’re listening to this and you struggle with binges with overeating, with weight, and with control, all I can give you is some love and support and ask you to become a philosopher of your own diet. Eat the food, think about the food as you taste the low-fat mayonnaise, start to wonder about the fact that the gum has replaced the oil and there’s a bacterial exudate in there that’s kind of snotty. And it’s a bit like mayonnaise but it’s also not quite like mayonnaise.

You know, you should enter this sort of uncanny valley of finding your food a bit ghoulish.
I can’t promise it’s going to happen, I certainly can’t promise you’re going to lose weight, if that’s what you want to do. I don’t think really that anyone should lose weight, I don’t even think that anyone should eat less ultra-processed food. My suspicion is if we reduce poverty and inequality, people would eat less. And that most people when they start to engage with the idea of emulsifiers, and artificial sweeteners and what they do to the body, most people think “I probably don’t want to eat this.”

But I’m allergic to telling people what to do because it just never works. Every therapist knows this, if someone wants to change, it’s down to them. The tragedy is that so many of us are trapped by circumstance and bad fortune.

I dodged that question, didn’t I? But I hope it’s useful to someone. Writing the book changed my life. It sounds corny, but it did and it changed Xand’s life particularly. Xand, as he read the manuscript and as I stopped bullying him, lost about 25 kilos. I’m not celebrating that because he doesn’t look better. I’m not even convinced he’s very much healthier. But he’s done something for him that he’s happy with, and so that I am happy about.

Moore: Chris, is there anything that we didn’t cover that you think is important to share?

van Tulleken: I hate framing these things as a problem. All the way through the book, I’ve struggled with the idea of “an obesity crisis,” “an obesity pandemic,” or “the problem of obesity.”

It is a problem in the sense it causes colossal suffering and it does hurt children particularly who have no agency over what they eat. But I do want to acknowledge that if someone is listening and they are living with obesity, I think using that phrase is quite important. Framing it as “living with” in the same way we do now with HIV, cancer, epilepsy or with diabetes. We don’t say, “You are a diabetic or an epileptic”, we don’t say, “You are cancerous.”

So I think if someone’s living with this, the whole conversation is just suppurating with shame, guilt and blame. I would like people to understand that it really isn’t them. It is the food and you should feel angry, and you are a victim. And the journey out of victimhood I think is activism. I had this sort of moment of “I’ve been duped and I’m the victim of these predatory corporations and the people who fail to regulate them.” Victimhood is not a very useful emotion, so you sort of turn that into real rage.

Moore: Chris, it’s just been fantastic to talk to you today. I do encourage people listening to read the book. It is so packed with science, describing the important research going on in corners of the world that we probably wouldn’t hear about in mainstream journals. The book is funny at points, it’s poignant at others. I think I referred to it as stomach-churning and gut-wrenching, it makes you think about what you’re putting into your body and the bodies of your families. I hope the book does well because it’s something people need to read.

van Tulleken: Well, I really appreciate your kind words on that. I don’t know what to say that isn’t going to be immodest, but I appreciate it and it’s been an absolute pleasure talking to you.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Chris van Tulleken—Ultra-Processed People: Why Do We All Eat Stuff That Isn’t Food and Why Can’t We Stop? appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/05/chris-van-tulleken-ultra-processed-people-why-do-we-all-eat-stuff-that-isnt-food/feed/ 12 https://www.madinamerica.com/2023/05/david-carmichael-antidepressant-safety-tour/ https://www.madinamerica.com/2023/05/david-carmichael-antidepressant-safety-tour/#comments Wed, 10 May 2023 10:01:05 +0000 https://www.madinamerica.com/?p=245383 Drug safety advocate David Carmichael joins us to discuss his upcoming antidepressant safety tour and the importance of fully informed consent when prescribing SSRI antidepressants.

The post David Carmichael—The Antidepressant Safety Tour appeared first on Mad In America.

]]> This week on the Mad in America podcast, we hear from drug safety advocate David Carmichael. David has personal knowledge of the effects of psychiatric drugs, having experienced a family tragedy in 2004. David now uses his knowledge and experience to help people make informed choices about prescription drug use.

In November 2023, he will embark on a tour of 15 U.S. cities, aiming to educate and inform about the possible risks of antidepressant treatment. In this interview, we talk about David’s experiences, his upcoming antidepressant safety tour, and the importance of fully informed consent at the time of prescribing.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: David, welcome, thank you so much for joining me today for the Mad in America Podcast. I’m grateful to you for finding the time to share your experiences with us.

David Carmichael: Well, I really appreciate the opportunity, James.

Moore: You are a drug safety advocate and you became one because of a tragedy that befell your family in 2004. So I wondered if you could share a little bit about your experiences.

Carmichael: Well, in 2003, I was dealing with cash flow issues, like so many people are today because of the fallout from the COVID pandemic, and I wasn’t sure exactly what to do. I was very quickly prescribed the SSRI antidepressant Paxil, known as Seroxat in the U.K., because I was told I had this chemical imbalance in my brain.

So I was on Paxil for eight months. I was able to pick up some contract work and things were getting a little bit more stable. But I had a couple of side effects that I didn’t like; sexual dysfunction was one of them and I was sweating at night. So I tried to find out what I could about how you get off these drugs but there’s really nothing out there.

I was told to slow taper, so I tapered off over several weeks and I was doing pretty well. But I still had a lot of contract work to do and for the first time, it made me I think a little bit manic. I had a lot of energy, I didn’t have to sleep much so I became sleep deprived, and after four months of being off the drug, I again went through what I call a nervous breakdown. That’s what they might have called it many years ago.

But I just wasn’t sleeping at night, I was feeling anxious and I was shaking just a little bit. I had a full prescription previously, so I put myself back on the drug. I told my doctor, but I knew he wasn’t going to prescribe it again. So I just put myself back on 40 milligrams. As soon as I did, I started to have suicidal thoughts. When I had these thoughts, I thought, oh my goodness, I’m glad I got myself back on Paxil just in time. And none of the warnings were out back in 2004, not to the public.

I was having these suicidal thoughts with suicidal planning, so I actually increased my own dosage. I knew that 60 milligrams was the maximum level that you could take because my doctor had told me it was all right. When I did, I became increasingly psychotic with delusions thinking my son, who had mild epilepsy, had permanent brain damage. I thought he was going to kill my daughter and my wife was going to have a breakdown. Over two weeks these delusions started to increase in strength, but they were really fixed false beliefs.

My wife thought I was getting better. I had become calmer and I planned first a murder-suicide at our family cottage. I was going to drown both Ian and me because I was still suicidal and I thought I was protecting Ian from a living hell. So I thought that was the best thing for both of us. We had a boat and we had an anchor on it. I was going to tie the anchor to us and drown us both. But I forgot my bathing suit and that was a sign from God. I’m not a churchgoer, but I became quite spiritual at this point, thinking that I wasn’t supposed to die.

Over the course of a week, I planned a father-son outing to a BMX park just outside of Toronto, Canada and I figured out what would be the best way to take Ian’s life. So on the Tuesday before the weekend, I went to Shoppers Drug Mart and bought sleeping medication. I poured it all into a vial and I took that with me.

So we planned this trip and went away. He was excited and we had a wonderful suite in a hotel. To me, it was supposed to be almost a celebration of his death, in my bizarre state. A forensic psychiatrist has told me that a delusion is a fixed false belief. You take an issue and you blow it out of proportion 30 times and then you act on it, which is what I was doing.

So we had his favorite food for dinner and we watched his favorite movie. Around 8 pm, I poured all the sleeping medication into a glass of orange juice. He drank it, but it didn’t put him to sleep, it made him hallucinate.

So we were bouncing around the room until around 3 am, when I thought, you know, I’ve got to take his life. So I strangled him. Then I sat for six hours, with his body on the bed, I put his hands across his chest, kissed him on the lips and told him, “I love you, I’m really going to miss you, but you’re in a better place now.” And I waited until 9 am to call 911 because I didn’t want to disturb the other guests in the hotel. Then I was arrested and charged with first-degree murder.

Moore: Thank you for sharing that. I just can’t imagine what it’s like for a person who has been a loving parent to suddenly become under the sway of a drug-induced psychosis, kill their child and then have to come to terms with what happened.

You were found not criminally responsible for Ian’s death in 2005 and then you were treated in a Canadian mental health facility. Is that right? 

Carmichael: I was found not criminally responsible, and it was a joint resolution between what we call in Canada the Crown Attorney, which is the prosecutor, and my criminal defense lawyer.

There was no question that I was psychotic. Both of the experts, including a forensic psychiatrist, agreed that I was psychotic. They diagnosed me as having major depression with psychotic episodes. What wasn’t brought into the case was the fact that I was on Paxil at the time.

So I was found what most people would understand as insane. In Canada, we call it “not criminally responsible.” Then I went to a mental health center in Brockville, Ontario and I had to sort of work my way out of that system. So I was an inpatient for a while. Then I became an outpatient, and I was fully discharged in 2009. So within four years, I was out of the system with no criminal record, which allows me to travel. Within three years, I was living with my family again.

I feel very fortunate that this happened in Canada and I feel incredibly fortunate that I had a couple of great friends, including a psychiatrist to diagnose me and who understood this. So I feel quite fortunate to be able to advocate for drug safety.

Moore: When you were in the mental health facility, were you forcibly medicated there or did they try and put you back on antidepressants? How did they treat you regarding the drugs once you were in a facility?

Carmichael: I wasn’t forcibly medicated, but I was compliant. I was put on Effexor before my criminal trial, which lasted three days. So when I went to Brockville Mental Health Centre, I was already on Effexor, which is an SNRI, not an SSRI. It had very similar side effects when I started it. I pretty quickly recognized that probably the best way for me to get out of the system was to be compliant even though I knew these drugs didn’t work well with me.

So I put on a lot of weight with Effexor and I was on it for five and a half years. Then in 2010, I sort of slowly weaned off with support from Yolanda Lucire, who is an Australian forensic psychiatrist and an expert in metabolism and DNA. So I’ve been off of all psychiatric drugs since 2010.

Moore: Given these awful experiences, I have to ask, have you been able to forgive yourself? How has your family come to terms with this and how have you approached trying to find some peace after that tragedy?

Carmichael: Great questions. Let’s start with my family. My daughter, without me asking, has been on a couple of major broadcasts with me. We were on the Dr. Oz show together, two episodes of A Current Affairs show in Canada called CTV-WFIVE, and in a BBC panorama film.

The reason she stood right beside me from the beginning is because she knew who I was. I only had one bad year in my life and even when I was on Paxil for the first time in eight months, I was abrupt. It wasn’t necessarily a full-blown, homicidal psychotic episode, but I was abrupt. I wasn’t physically violent, but certainly probably verbally and my daughter noticed that and my wife noticed that. So they both forgave me and encouraged me to forgive myself, but that’s much harder.

First of all, the way that I’ve done this is that you have to do enough research and talk to enough people, including David Healy and Robert Whitaker, to really believe it was the drug. That’s the first thing. I broke my silence when I was still a forensic inpatient and my treating psychiatrist supported that. I had to convince myself and believe that it was the drug that caused the psychosis because I was getting this question, “Oh, it’s easier to blame the drug than yourself.” I got that in almost every interview, once I broke my silence.

The second was that I had to find a purpose and it’s a lifelong purpose. You know, it changes and it might continue to change but I’ll always be a drug safety advocate. My interest is in the antidepressant area, but also with all drugs. In 2012, I set up a campaign, which is called “Know Your Drugs” and KnowYourDrugs.org is the website. I started to work on it back in 2012 but I didn’t launch the website until 2015.

Moore: I’d like to talk about your drug safety advocate work now. In November 2023, you are embarking on a tour to 15 U.S. cities to raise awareness of the risks of SSRIs and other antidepressants and to help people make informed choices about their use.

Can you tell us a little bit about the tour, what form it will take, how people can find out if you’re coming to a place near them and how they can attend?

Carmichael: The reason I’m touring and looking generally at prescription drug safety is that in 2018, I was on a mental health and crisis lecture tour in Australia and New Zealand. There were several medical researchers involved and it was organized by a woman who lost her son to SSRI-induced suicide, Maria Bradshaw is her name. Peter Gøtzsche was there and Robert Whitaker. We went to New Zealand and Live Talk Radio only wanted me, they didn’t want the medical researchers, they just wanted the “true crime, killer dad” story.

So I went on to a live radio show and I was introduced as the killer dad. The first question was, “How does it feel to kill your own child?” and I wasn’t expecting that. But I’m getting more used to dealing with those difficult types of openings. When I came back from Australia and New Zealand, I said, you know, to get the mainstream media interested, what they want are the stories.

Fortunately, I’ve got great access to some tremendous medical researchers, because I need the theory behind it, but I need to put it in plain language. I was able to engage the mainstream media, even with the cross-Canada tour in 2022. There were nine cities and it didn’t have a lot of people that came to the actual events. But there were two current affairs shows, one in Canada and an Australian show. Between them, they reach a few million people.

That’s my interest, trying to reach a broader public. I have no idea what’s going to happen in the U.S. because the pharmaceutical industry with direct-to-consumer advertising has an incredible influence on the major networks, but I have got to give it a go.

Moore: In terms of finding out more about the tour, I guess that people could visit your website, which is KnowYourDrugs.org. Is that right?

Carmichael: Yes, that’s right. It’s the tour page. And in the actual tour the focus is going to be on antidepressants.

Moore: Thank you, David. I think it’s incredibly important to give people the information they need about some pretty horrific potential consequences of taking antidepressant drugs. 

As you said, yourself, the research says one thing, but there isn’t anything like hearing personal experience when it comes to really making people understand this is quite a big choice in life, isn’t it?

Carmichael: Well, I think it is. My experience is rare but it happens and there are a lot more common experiences. When I was in New Zealand on the live radio show, I talked about sexual dysfunction issues. There was a woman that was listening and she came to the session that evening irate. She had no idea that sexual dysfunction was a side effect of SSRIs. She basically claimed that it destroyed her marriage. Now, I didn’t talk to her afterwards. I’d like to have heard more about her story, but there are a lot of people that have had their relationships probably maybe not destroyed, but certainly affected by sexual dysfunction issues.

You’ve also got the issues of emotional blunting, or that you don’t feel anything positive or negative, and there’s no way that doesn’t affect your life. I mean, it may prevent some worries, but there are other implications. So it goes well beyond these extreme stories of how SSRIs can cause suicide or violence or homicides or the connection to mass shootings.

So I hope that it does engage the broader public because there are a lot of people on antidepressants.

Moore: Thank you, David. You mentioned there that your case is rare, but it’s not the only case of this kind of event happening within a family and I wondered if it’s okay if we could talk a little bit about the case of Lindsay Clancy. 

Some listeners might already know, but Lindsay is a 32-year-old mother from Boston, who became anxious about returning to work as a labor delivery nurse after her maternity leave. In October 2022, she decided to meet with a psychiatrist and then in January 2023, after being prescribed 13 different drugs in the previous four months including two SSRIs, she tragically took the lives of her three young children during a psychotic episode and then attempted suicide herself. 

This is another heartbreaking tragedy and the legal case is in progress. The prosecution is claiming that this was an act of premeditated murder and the defense is making the argument that Lindsay was mentally unwell at that time. So, given your experiences, David, I wondered what your thoughts were about this tragic event.

Carmichael: Well, I probably can relate to that story as much as any story. She was on two different SSRIs of the 13 drugs, Prozac and Zoloft. I don’t know whether she had just started, increased the dosage, or was coming off; it’s very hard to know the details. I think what’s really interesting in this story is that the prosecutor said she couldn’t have planned this if she was psychotic and the argument was that it was planned. I’m not going to comment on that, it’s before the courts. You can absolutely plan and be psychotic, especially on an SSRI-induced psychotic episode.

So that’s really what prompted my interest in this whole story, it is an incredible tragedy. In her background, there was no history. She was a labor delivery nurse in a hospital, she was home and people started comparing it with postpartum depression. I think it was past that stage based on my understanding. She was anxious about returning to work after maternity leave. She had three young children, a five and a three-year-old and an eight-month-old so that’s understandable. Then suddenly, she went to her first psychiatrist, and four months later, she had been on 13 drugs. So it’s a case that I think everybody should be watching closely. I certainly am.

Moore: These events are not easy things to talk about, or to hear and understand. But it’s so important that we do understand the full gamut of people’s different reactions to SSRIs and antidepressants.

Carmichael: My real interest is not just the case but I hope that somehow that it can help Lindsay forgive herself, which to me, is the most difficult thing. There was a GoFundMe campaign to raise money and part of that was her husband talking out about forgiving Lindsay. Her challenge will be forgiving herself. One thing that kept me alive and going was my daughter, Gillian. I had my daughter to live for. So it’s going to be very difficult. The purpose is critical, but she has to definitely believe it was the drugs.

Those are the two key components in me forgiving myself. It doesn’t apply to everybody, of course. But those two are important to me. And I hope regardless of what happens in terms of the outcome of her trial, I hope she can find it deep within herself to forgive herself. It’s just a tragic case and one that I really heartfelt. It was very difficult for me to read the details because there are so many similarities between her tragedy and my own.

Moore: Thank you, David. In 2018, you wrote a piece for Mad in America, and you described the tragedy that your family suffered while you were experiencing drug-induced psychosis. You also talked about this as a possible risk factor in mass shootings. So I wonder if we could talk about that a little bit.

Carmichael: One of the critical things for me, when I connected the mass shootings is the calm, organized behavior. At the end of the day, it’s people that pull the trigger, so what’s actually going on with them? No one is looking at that. And even if there’s an SSRI or another antidepressant or psychiatric drug involved, you don’t hear about it.

We can speculate, and there are many cases where we have found out and there are many cases where we have no idea. But it’s their calm, organized planning that is very similar to my case. In the last week, I got the sleeping medication, I planned the trip, and no one could even tell that anything was wrong with me. I had a business meeting in the middle of the week. I was directing a children’s summer camp in Toronto and I was there on the Friday morning and drove off with Ian on the Friday afternoon.

I think a lot of the people who look at these mass shooters, they can’t tell if anything is wrong with them because they seem to be very normal. And to me, they become normal as they become more delusional and more psychotic. Someone needs to be able to recognize what I would call their false belief and work with it.

It doesn’t mean telling them they are wrong because that doesn’t work. I absolutely thought I had to take Ian’s life and I was prepared to sacrifice my own by spending 25 years in prison. I didn’t need a lawyer, I didn’t want a lawyer. I just said, “I just want to start my prison sentence.” That’s all that I wanted to do at that time because I thought the sacrifice was so important.

So we don’t really know what’s going through the minds of a lot of these shooters. And it’s important to intervene. If you see any type of odd behavior, ask them questions. You believe this so you’ll talk about it. I would have but nobody asked me anything, and it wasn’t that I was going to share. I just didn’t feel that I had to. I thought I was going to do the whole family a favor.

Moore: When there are reports of mass shootings, typically, the news reports will say they were suffering from anxiety or depression but it’s just as important to understand, whether they have started, stopped, or changed dosage of medications in the period leading up to the tragedy.

Carmichael: If it’s a suicide, there should be mandatory toxicology testing and the results should be released publicly without someone having to go through a Freedom of Information request. I believe that information is important to share.

Moore: So for people listening to this conversation, what’s the most important thing to know about antidepressant drugs?

Carmichael: The reason I set up KnowYourDrugs.org is that I think people have to be able to make informed choices in terms of prescription drug use. A lot of doctors aren’t aware of all the side effects because the pharmaceutical companies have concealed them to get approval. And then I think we have to make sure, focusing on antidepressants, that users are closely monitored. That people around you know what the side effects may be, people around you recognize what akathisia is, they don’t think your condition is getting worse, they recognize that might be a side effect, which to me is a very good indicator to get off that drug right away.

That’s the most important part, making an informed choice, and doctors have to work with you on this. They have to make sure that you understand potential side effects. And then it’s very important for people to monitor you anytime you’re starting a drug or changing dosage, and during withdrawal. So the message is actually fairly simple. It’s just something we haven’t done in the past in most cases.

To me, you know, part of me forgiving myself was my purpose and that’s why I’ve been a drug safety advocate since 2006. I hope that this antidepressant safety tour engages the public. We have to engage the public before they get harmed and that’s not happening. I’m really hoping I can help prevent people from being harmed or harming others. And that’s really why I’m doing it and hoping I can engage the mainstream media. We’ll find out starting in November of this year.

Moore: David, I can’t thank you enough for coming on and talking about such difficult experiences. Nobody could blame you or your family for wanting to hide away and not ever speak about this again. But I think it’s incredibly courageous to be front and center out there talking about this to people being interviewed on television, being interviewed on podcasts, and educating others because we can’t rely on the official information about this, can we? Because we know that the evidence of harm is held back and people aren’t given the full facts. I really admire your courage in being willing to talk about these things.

Carmichael: Well, I appreciate that. It gets difficult sometimes. Anyway, James, thank you.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post David Carmichael—The Antidepressant Safety Tour appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/05/david-carmichael-antidepressant-safety-tour/feed/ 7 https://www.madinamerica.com/2023/04/tanya-frank-zig-zag-boy-struggles-with-broken-mental-healthcare/ https://www.madinamerica.com/2023/04/tanya-frank-zig-zag-boy-struggles-with-broken-mental-healthcare/#comments Wed, 05 Apr 2023 10:05:40 +0000 https://www.madinamerica.com/?p=244239 Author Tanya Frank discusses her book 'Zig-Zag Boy A Memoir of Madness and Motherhood', which chronicles the experiences of her son Zach who experienced psychosis as a 19-year-old.

The post Tanya Frank—Zig-Zag Boy: My Family’s Struggles With Broken Mental Healthcare appeared first on Mad In America.

]]> On the Mad in America podcast this week, we chat with author and educator Tanya Frank.

Tanya has worked as a college and university lecturer in the UK and taught middle school children, teens, and elders in the US. She has also trained as a wildlife guide in California and has been an advocate for people with lived experience of psychosis. Tanya’s work has appeared in the Guardian, the New York Times, and the Washington Post, as well as appearing in literary journals, including KCET Departures and Sinister Wisdom.

In this interview, we talk about Tanya’s recently released book entitled Zig-Zag Boy: A Memoir of Madness and Motherhood, which chronicles the experiences of her son Zach, who experienced psychosis as a 19-year-old. The book is a heartfelt and beautifully written account of dealing with mental distress and speaks movingly and honestly about the family’s struggles with broken healthcare systems in the US and the UK.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Tanya, welcome. Thank you so much for joining me today for the Mad in America Podcast. I’m thrilled that we can get to speak to you.

Tanya Frank: Thank you. I’m thrilled to be here. It’s an honor.

Moore: As mentioned in the introduction, you are a trained teacher and lecturer. You’ve been a wildlife guide in the US, known as a docent, and most recently, you’ve been an advocate for families with experiences of psychosis, but we’re here today to talk about your writing and in particular, your latest book entitled Zig-Zag Boy: A Memoir of Madness and Motherhood.

Could you give us a flavor of the book, what it is about, and what motivated you to write about your family’s experiences?

Frank: The book covers a 10-year span in my life and it’s the journey that I took with my son from the moment of his first altered state, which is often known within the medical model as psychosis, up until the end of the pandemic.

We traveled through America and the UK in search of answers and in search of treatment. We were trying to fix this thing for the longest time until the point that I realized that I need to try and grow into a sense of acceptance and ask different questions rather than just be led solely by the biomedical medical model which sees this as something rooted in the individual and something broken.

So, it intersperses this journey with my son through different treatments with an elephant seal colony where I worked as a docent. This was my time and my space away from this other world that was quite consuming. It gave me time to think and reinvent myself a little bit. It was completely off the grid. So, nobody could reach me, which was very difficult at first.

I think that the elephant seal was, like a lot of things in nature, a metaphor for what Zach was going through. So the mystery of one of the largest, deepest-diving marine mammals really reminded me in a lot of ways of the mystery of the brain. So much that couldn’t be understood, and when the elephant seals had to leave their pups, it gave me a lot of food for thought about how I might step away a little bit from what was going on with Zach, and what that meant.

Moore: Thank you, Tanya. The book is deeply affecting and beautifully written. If someone tried to get me to think previously about possible parallels between marine life and mental distress, I would have struggled, but your writing makes those connections seem so natural and meaningful.

Frank: Thank you.

Moore: So Zach had started to struggle with unusual experiences, and you talk in the book about the way that his diagnosis changed according to who he saw. That seemed to shake your confidence in the system. You used a brilliant phrase about your experience of the diagnosis process. You said, “It’s guesswork, trial and error. More like a game of spin the bottle than science.”

Could tell us more about what you were expecting from getting a diagnosis, how it worked out, and what you feel about it?

Frank: In the beginning, when Zach first went into the hospital, he came out with a diagnosis of psychosis NOS, where NOS stood for “Not Otherwise Specified,” which seemed vague to me. It made it hard to understand quite what it would have meant.

I did some research which led me to other terms and to look at the idea of psychosis, but it really did seem like a label used when the clinicians weren’t sure how to label something. They said that it could possibly be just one episode, and it might never happen again. They thought that it could be from marijuana use and if Zach could stop smoking, that it would diminish.

So, it really caused me a lot of time away from Zach being distracted by trying to understand what this label meant and how it would affect him and affect all of us rather than just being with him, and his distress. And then, of course, the label changed over time, and that was interesting because sometimes he would be classified as having schizophrenia or paranoid schizophrenia, or psychosis with depressive traits.

Schizo-affective disorder was one that seemed to stick for the longest, but even now, sometimes I notice on reports that clinicians write different things and that seems like either they disagree between themselves or that actually, it’s not as important, as long as it has “schizo,” or “schizoid,” or something of that kind of terminology within it, but it’s almost lumped into the same syndrome or disorder.

Moore: I think you are the only person that I have spoken with for this podcast who has experienced the mental health system on both sides of the Atlantic. When you were taking Zach in for treatment, did you find the approaches similar or very different?

Frank: I found them similar in some ways, but I found them different in other ways. In America, the health system is often insurance-based and there is a lot more private healthcare. So, people that are employed might have insurance through their employer, students have insurance through the university. If you are quite poor, if you are somebody who isn’t employed or doesn’t have insurance through employment, you have a different kind of insurance. You are insured through the state, and there are different treatment programs and different hospitals, depending on what kind of insurance you have. It was a very stark difference.

When Zach had insurance as a student, he was able to go to hospitals where they looked much cleaner and they weren’t as crowded. He had his own space and I could visit more often. I could sit by the side of his bed and go into a little cafeteria and have tea. So, it seemed, I guess, a little more humane.

In the hospitals when we did not have insurance, they felt much more like prison, even though I’ve never been inside an actual designated prison. It felt very prison-esque to me. I was never allowed to see where Zach was sleeping. We met in a kind of canteen where there were almost like, it felt like prison guards on duty that would stand and the visiting hours were much less, and even the medication was different.

In the private hospitals, you were able to have medication that was in pill form. In the hospitals that were run by the state, they were more often about giving depot injections and they would also turn people out very quickly. Often when they were in a worse state, to my mind, than when they went in.

In our case, when Zach was still very traumatized, they would do a depot injection and just release him. Some people would be put in a taxi and go to skid row or a homeless hostel. So, that felt quite different, in a way, to here, in the UK, where although Zach was discharged into homeless accommodation it was often like a bed and breakfast.

There are some similarities in terms of the reliance on drugs. I think that the UK is moving very quickly in a similar fashion to the US in terms of pharmaceuticals being the first line of defense, and also there are more private insurance and private hospitals that are springing up to deal with mental health when the NHS doesn’t have the funding or the capacity. So, I think there are similarities in that way.

Moore: When you are over here in the UK, there is a part of the book where one of the mental health team says to you, “Unfortunately, Zach might have to get much worse before we can help him,” and that’s such a terrible place to put people into, isn’t it? Zach is probably not quite well enough to live unsupported on his own, but they are deeming him not ill enough to need hospital treatment. That must have been a terrible place to be.

Frank: Yes, absolutely, it was so distressing because your loved one is so vulnerable that you are in a state of fear much of the time and especially for families that lack resources. I wasn’t homeless, I had enough money to be able to accommodate Zach and we weren’t facing some of the barriers that some people face.

Yet, even for us, it was excruciatingly difficult to know that to be helped, you had to be in a place where you were about to throw yourself off a bridge or be classified as dangerous to yourself or others to qualify for that support. And then, even when that support comes, it’s about how medicalized it is. There is not really a sense to talk about it or see it as a process, but rather at that point, it’s really about controlling somebody’s behavior, and it’s all about averting risk.

So, it felt like there are these two ends of the spectrum. There are so many people waiting to even see someone to talk about their grief or their trauma or their distress at one end and they wait and wait. Then there is the other end of the spectrum for Zach and other families like ours, where the so-called illness is almost criminalized to the extent that somebody is locked away and warehoused, and it’s very difficult to move them back into the community, which is to my mind the place where people can heal or recover, or be with loved ones in a way that helps them most.

Moore: Thank you so much, Tanya. I’d like to ask about the complicated relationship that Zach had with his prescribed drugs. He was given antipsychotics but he seemed to struggle with them almost from the get-go. It must have been quite hard to think that he was going to be helped by them, and then he see him suffer the adverse effects. So, I hope it’s okay if I read a little bit of what you wrote in the book because it’s so powerful.

You say, “The pharmacist explains that the prescribed low starting dose of the psychiatric drugs is apparently the norm. There are instructions to increase slowly to avoid side effects. So, it surprises me when I wake the next day to find Zach perched on the edge of the couch with his knees bouncing up and down, his hands on them, trying to still his movements. His eyes twitch and his tongue flicks in and out like the bearded dragon he kept as a boy. He walks around the house for no reason other than his mind and body won’t let him be still.

“’I feel like there is something inside of me, trying to get out,’ he says, between lip-smacking bites. His distress makes my stomach lurch. I place my feet flat on the floor and brace myself to try and quell the effects of his jittery legs.”

That’s really tough to read and I would imagine, incredibly tough as a mother to see going on with your son. You write really well in the book about Zach’s relationship with his drugs and his thoughts about them, but I wondered how you felt about how the drugs were used and whether they were helpful for Zach.

Frank: It’s an interesting question and I think it’s a really emotive one around the drugs because of course there are people that feel that these drugs have saved them and saved their lives. So, I’m not talking for the entire population but definitely, for Zach, the drugs have never really helped him and in fact, they have always seemed to harm him.

He now has Parkinsonian tremors that are so extensive from high doses of antipsychotics that he often can’t sleep and it’s very distressing to see that. He also has metabolic syndrome, which is very common for people that have been on antipsychotics for any length of time. This is high blood sugar, fatty liver, and high blood pressure. There is a lot of excess weight because the drugs can cause carbohydrate cravings and also the metabolizing of food in a very different way to those of us that aren’t on those drugs.

In the beginning, I never realized that these drugs were so powerful and that if Zach refused them, he would often be labeled as non-compliant. Seen not as somebody who was just ill but as somebody who was quite deviant because he didn’t want to comply. And then when the drugs didn’t work, he was often labeled treatment-resistant but still given the drugs.

So, it was confusing to me that if something isn’t working and it’s harming somebody that there wasn’t any attempt to look at stopping or tapering or trying maybe some talk therapy. It’s very hard to find doctors who taper in a way that’s safe enough for somebody to be able to come off the medicine. The higher the dose and the longer somebody remains on it, the more difficult it can be to stop those drugs just because of the dependence, the physiological reliance, and the way that the drugs can change the brain.

In the beginning, I really trusted the doctors because why shouldn’t I? I was brought up to trust doctors and I thought that the medicine would be a cure. So, it shocked me and I remember a psychiatrist adamantly saying to us, “You have to keep on with these drugs. If you stop, you will end up in the hospital,” that was such a strong message and it made us frightened about having to go back to the hospital.

So, I would often try to force him, I was another coercive element in saying that we have to keep going. We have to trust the doctors. You have to take this medicine. I think in retrospect, I wish that I had given Zach and our family a chance to try some other options because I think once somebody is exposed to the kind of trauma and the kind of long-term drugging that Zach has experienced, it becomes much more complicated and much harder to find that place. I don’t know what you might call it, a baseline or return to some semblance of joy and autonomy as a human because I think it’s messier and you’re unpicking a lot more than when you first started with this human distress, this human thing that all of us as beings go through in our lifetimes.

Moore: Thank you for sharing that. It also struck me in reading the book that actually, Zach had incredible insight into the drugs that he was taking for his condition. At one point, he tells his girlfriend Savannah that when he takes his prescribed drugs, he feels numb inside. He feels dead and if he feels that, he may as well be dead. The experience of psychosis is at least one with feelings, as extreme as they are. He knows he is alive in that state.

That stuck with me because one of the things that befall people that sadly struggle with mental distress is at some point, they get labeled that they lack insight into their own condition. And yet, here is Zach with perfect insight into it. He feels either sedated and disconnected on the drugs, but when he is hearing voices or having his experiences, at least he knows he is in touch with the world.

Frank: Yes, absolutely. And there is a medicalized term for this lack of insight as well, “anosognosia.” People that believe in it espouse the notion that there is this lack of insight, and if only somebody could develop insight and take their medicine as prescribed that they would get better and live happily ever after.

I think my a-ha moment when I started questioning some of these ideas was when we met a psychologist in Northern California. It was some years into Zach’s journey and she had been given the same diagnosis as Zach. She also spoke about how she felt so numb, just like Zach did, that she was willing to end her life because there was no quality of life.

So, she started to taper herself, because there were no doctors that would support her. So, she did the work. I think she got in touch with Will Hall and his project. So, very, very slowly she did this and she weighed and measured, and she finally managed to taper, and she was helping other people to make that choice if they wanted to.

Just seeing her in her role and all of her humanness made me just think that this was possible, and then I met more and more ex-psychiatric survivors and was introduced to the Hearing Voices Network and Open Dialogue, and ways for Zach to connect with peers rather than have to take authority from doctors or people that he was by that point quite suspicious of and quite afraid of.

I think that gave me a whole new body of knowledge and just another viewpoint through which to see Zach’s experience.

Moore: The medical model is only one way of seeing these experiences, isn’t it, and as you say, once you discovered there are other ways of seeing it, for some people it becomes a bit less terrifying and a bit less scientific and confusing.

Also, you quite rightly say in the book and again, not for everyone and not wanting to romanticize it, because hearing voices or having visions is terrifying for some people, but some other people develop a relationship with their voices and don’t see them as threatening. So, it doesn’t need to always be following the medical model, does it?

Frank: No, absolutely not. I think that we try to have everybody fit into a certain category or we put square pegs into round holes. Not everybody is the same. We are very diverse and we live in this world with such diverse experiences, and I think that it’s really good that there is more attention now to neurodiversity. I do feel like it’s something that I hear and read more about.

I also think there is a little bit more attention on stories like ours, which I feel is hopeful, but I also at times think that it’s a hard battle because the pharmaceutical industry and the psychiatric model definitely have a lot of money and a lot of power.

So, I think you need your kin to actually walk through this choice. If you are going to take away some of these layers and look a little bit deeper about what might have happened to someone, rather than what is wrong with them. I think having a tribe to do that with is important and I have that, I am really lucky that I do have that.

I have a group of other parents that I can reach out to and talk to, and they are also incredibly smart and well-resourced. One of them used to work as a social worker, one used to work as a psychiatric nurse, and one is an academic. I think it’s almost like a hive mind, where it’s not just about being sad or being worried or trying to get through a tribunal, but about really looking at some of the laws and the things that are very hard to understand in a system that is quite bureaucratic and still quite archaic. So, to have a team to help you through that, I think, is beneficial.

Moore: I couldn’t agree more. Thank you, Tanya. I’d like to go on in a minute, if it’s okay, to talk about reaction to the book, but before you get there, if it’s okay, I just wanted to know how is Zach doing now and how are you doing now.

Frank: There was a lot of anticipation for this book because it took me a long time to write and I felt extremely vulnerable when the book came out. It felt really like being quite naked out there, suddenly. It was not just any memoir but it was a very sensitive memoir, and I also worried a little bit about Zach as well, both of us being quite exposed, but it was also a very exciting time and I felt like it was empowering us to be able to have a voice that went a little bit further, and a voice that was heard because I often feel that my voice isn’t really heard and Zach’s voice has been so silenced that quite often, he doesn’t even talk.

He actually has stopped talking at all, because I think he feels that if he talks about his voices or if he talks about feeling hopeless or wanting to die, I think the response is one that disempowers him further.

So, I think one learns very quickly in that situation to just be silent. So yes, it was very exciting and it had taken a long time. I had a launch party and I had so much support. Also, it has led to discussion. I had a lot of articles come out on both sides of the pond and the book was reviewed in the New York Times, which felt very prestigious to be able to have that attention.

I am kind of thinking that this book might be one that touches some people’s hearts, rather than a book that becomes a bestseller, and I am learning to accept that and have some gratitude around that. I’ve had a lot of emails and messages about how the book has touched people and how their experience is similar, and I’ve been able to also support them, and guide them towards some of the groups that I belong to so that they too can have a voice and benefit from some of those campaigns and some of that advocacy.

Moore: I hope it does become a bestseller. If I were a parent with a child or had a partner who was struggling with some of these experiences, this is exactly the kind of book that I would like to read. You don’t pull any punches, you describe the severe difficulties that Zach has and you have as a family, but also you describe how haphazard the treatment is and how sometimes the treatment lacked compassion and didn’t see Zach as a person. But also there is so much hope in the book in terms of different routes for help.

So, I read it once to do the podcast and now I’m reading it again but from a parent’s perspective, more slowly, and taking time. It’s powerful and it’s beautiful.

Frank: Thank you. Thank you so much. I appreciate that.

Moore: I’m sure so many people will get a huge amount from reading the book, and I certainly did, but you wrote a piece for The Guardian newspaper and a UK psychiatrist on Twitter made quite a telling comment. He referred to it as “anti-psychiatry spin.” When reading the honest, heartfelt reflections of a mother on her son’s treatment by mental health services, people like that can’t even look to improving what they provide rather than giving a diminishing response. I felt really sad seeing that.

Frank: Yes. Me too, actually. Part of me maybe even expected that, as cruel and cutting as it was, just because I think there is such a defensiveness on the part of many psychiatrists. I think that my narrative was perhaps just something that was too challenging and would’ve caused a lot of reflection on their part, and that reflection could probably be painful, I’m sure.

So, I think it’s very easy to just dismiss somebody and to say that they are anti-psychiatry, rather than looking at the fact that, I am not anti-psychiatry, I am anti the very difficult iatrogenic effects of these drugs and some of the ways in which psychiatry can work to take away somebody’s autonomy. That is my personal story.

I think that to use that label as well harps on this idea of the 1960s and psychedelics and R. D. Lang and this whole idea of rebellion. That’s not who I am, and that’s not who I can be even at this time, but yes, I think that to withstand those kinds of comments again, if you are in the field and you are practicing, or you are preaching some way that’s deemed as alternative, I think to be in your camp with others that can make you feel safe is important.

Moore: Tanya, it’s been such a pleasure to talk about your book. It’s thought-provoking, it’s heartfelt, and it’s powerful. It’s beautiful in parts, it’s savage in other parts. The parallels between your experiences and marine life are quite stunning. I think it’s so important that we share personal experience in this way, because otherwise, we do only apply a medical lens, and for people out there struggling with these experiences, we do need to make people aware that there are alternatives and different ways of looking at this. We don’t necessarily have to collude with the medical model as it’s presented to us.

I think you do a fantastic job of talking openly about all that. So, thank you.

Frank: Thank you so much, James. I appreciate it. It’s been wonderful to just be able to have this conversation with you.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

 

The post Tanya Frank—Zig-Zag Boy: My Family’s Struggles With Broken Mental Healthcare appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/04/tanya-frank-zig-zag-boy-struggles-with-broken-mental-healthcare/feed/ 9 https://www.madinamerica.com/2023/02/chemicals-have-consequences-antidepressants-pregnancy-adam-urato/ https://www.madinamerica.com/2023/02/chemicals-have-consequences-antidepressants-pregnancy-adam-urato/#comments Wed, 22 Feb 2023 11:01:19 +0000 https://www.madinamerica.com/?p=243017 Adam joins us to discuss what we do and don’t know about the effects of antidepressants on babies and mothers and the importance of counselling in order to aid families in making important decisions about pharmaceutical drug use.

The post Chemicals Have Consequences—Antidepressants and Pregnancy: An Interview With Adam Urato, MD appeared first on Mad In America.

]]> On our podcast this week, we hear from Dr. Adam Urato.

Adam graduated from Harvard Medical School in 1997 and has been practicing medicine for over 25 years, specializing in obstetrics and gynecology. He cares for pregnant women on a daily basis as an attending maternal-fetal medicine physician at MetroWest Medical Center in Framingham, Massachusetts. He writes and lectures regularly on antidepressant use during pregnancy.

Adam has contributed to Mad in America’s continuing education efforts and his free course “Antidepressants and Pregnancy” can be found on Mad in America’s education section. It is an informative and comprehensive look into a little-discussed but very important area of women’s health.

For this interview, Adam joined me to discuss what we do and don’t know about the effects of antidepressants on babies and mothers and also the importance of counselling in order to aid families in making important decisions about pharmaceutical drug use.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Adam, welcome. Thank you so much for joining me today for the Mad in America podcast. We’ve had a lot of interest in hearing from someone with your particular skills and abilities. So, thank you for joining us.

Adam Urato: It’s a real pleasure to be here, thanks for having me.

Moore: You are a specialist in obstetrics and gynecology and you’ve been practicing medicine for over 20 years now. But in addition, I think it’s fair to say that you have developed a critical view of the way that some prescription drugs are used for pregnant women.

So to get us underway, could tell us a little bit about you and what was it that led you to question some of the conventional wisdom in this area?

Urato: I went into obstetrics because when I came to medical school, it was a cool thing and I loved doing it. I am very grateful that I’m able to do this every day. It’s a very diverse field as far as what we’re doing on a day-to-day basis. We’re taking care of pregnancy and pregnant women, but we end up dealing with medical issues and surgical issues. I still deliver babies and do operations, C-sections, and vaginal deliveries.

I’m also a full-time clinician and I take care of patients all day. I take care of patients at the hospital where I was born, which is a real pleasure for me. It’s great to be active in my home community where I was born and raised. I think the other element to it honestly, is that it’s a miracle, the developing baby and life and I know that sounds a little bit corny, but it really is.

As far as my interest goes in medications, this is something that I began to get interested in medical school when I was seeing how many medications our patients were on. I remember when I did my internal medicine rotation, my chief resident told me when they come in to make a list of all their medications and it would typically be anywhere between 10 and 20 medications.

I remember thinking at the time, what are the interactions between all of these medications that we’re using? Then when I did my residency in obstetrics and gynecology, I remember hearing discussions about drug safety in pregnancy and it got me thinking.

One of the overarching approaches that I try to emphasize to people is that medications for the most part are synthetic chemical compounds. And I really try to get people to think about that and understand that because I think that the pharmaceutical industry has done a great job at portraying them in their commercials that we have over here as blue skies and trees and beaches and rainbows and all of these sorts of things that distract you and take your eye off the ball a little bit.

At the end of the day, medications are synthetic chemical compounds, they are coming out of a chemical factory and they have chemical effects, that’s what chemicals do. So even as a medical student I was looking at the lists of medications and thinking about the developing fetus and chemical exposure.

Moore: In the introduction to this interview I mentioned the MIA Continuing Education course you did and the phrase you used in that was “chemicals have consequences.” That really stuck with me. It’s such a useful phrase to have in mind when we’re sold some medications almost as if they are kind of a lifestyle accessory. But, as you say, they are chemical compounds that have many effects on the body.

Urato: You just made my day by using that phrase because it’s one that I use commonly and I think my sons would say, “Oh, my God, there’s Dad using that phrase again.” But that is something that I think is important to get across to people, chemicals have consequences. Chemical compounds have chemical effects on biologic systems, that’s what they do. And also for us to always keep that in mind that it doesn’t mean you can’t use a medication. But it means that whenever you are taking it, you need to keep in mind that it is a chemical and then consider is the benefit I’m going to get from this going to offset these chemical effects.

I encourage people to embrace this. If you’re going to take a medication or thinking about taking a medication, it’s worth looking up the chemical structure on Google, you’ll see the rings of the carbon atoms, the nitrogens or whatnot, and understand that this is a synthetic chemical compound that you are about to ingest. And that it’s going to go into not just the location of what you’re trying to address, like if you have a headache to your head, or if your knee hurts to your knee. It’s typically going all over your body throughout all of your cells and going to have a consequence. It is going to have a chemical impact.

Moore: Thank you. So perhaps we can discuss some of those effects a little bit. People listening will know that serotonin is often talked about as being important in the treatment of depression, which I think it’s fair to say in itself is questionable. But it turns out that serotonin is pretty crucial in fetal development. So, I wondered if you could share with us a little bit about this and then why we should be concerned about the effects of selective serotonin reuptake inhibitors (SSRIs) on the mother’s body as well.

Urato: Sure. Before I go on, I do just want to jump in and make one point clear. I think a lot of times people hear these questions and they hear the answers and what they are hearing is, “This means that a pregnant woman should not be maintained on the medication.” I just wanted to make clear that that’s a separate question and something that I hope we can get into later. Women who are suffering from depression during pregnancy or other mental health issues need compassion, they need good care, and they shouldn’t be ignored or left to suffer.

I do this every day in my office and I work in the community where I grew up, so these are my neighbors and I take really good care of them. If they come to me and they’ve got a mental health issue, if they’re on an antidepressant or another psychotropic medication, you don’t make them feel guilty. You don’t embarrass them, you treat them with kindness, sympathy, and with dignity. You work with them to come up with the best plan for how to manage their mental health during pregnancy. I always tell them that’s the goal, we don’t tell them, “Look, you are pregnant, so you just need to suffer and do poorly.” That’s not the way to treat a pregnant woman.

So I want to just put that out there and be clear because I think people sometimes mistake a discussion about the chemical effects of antidepressants on the developing fetus with a discussion about how pregnant women on medication should be managed. And I just want to be clear that those are two separate things.

With that being said, I think that your question is a good one about fetal effects. As you were saying, there’s been a lot of recent controversy about that whole model of there being a serotonin deficiency and Joanna Moncrieff’s paper that came out got a lot of attention this past few months ago.

Serotonin is a crucial cell signaling molecule. It’s a neurotransmitter and it modulates developmental processes like cell proliferation and cell migration. When it comes to the wiring of the brain, it acts as a chemical messenger. So the serotonin system is crucially important early in the development of the embryo and it goes on from there throughout development.

This then gets back to what we were just discussing, which is that if you take a chemical and you alter the normal function of that serotonin system, it will have consequences and you’d expect to have possible complications. And we do see that the studies on antidepressant use in pregnancy are numerous and challenging for a variety of reasons.

There is no randomized controlled trial for antidepressant use in pregnancy, it’s not considered to be ethical to take a group of women and randomize half of them to the drug and the other half to other treatments. But that being said, we still have a lot of accumulated data over the years to help us be able to look at these things.

Right now, my reading of the literature is that there are links to miscarriage, birth defects, preterm birth, and also a condition called preeclampsia, which is a well-known complication in pregnancy where the mom gets high blood pressure and typically shows protein in her urine at the end of pregnancy. Also, women who are on SSRI antidepressants are at higher risk of postpartum hemorrhage. In the UK there’s a warning that they put out recently about this.

Then from there, there are newborn behavioral issues or newborn behavioral syndrome, which is a constellation of problems or issues for the baby including agitation, restlessness, irritability, poor feeding, trouble sleeping, low blood sugar, hypoglycemia, trouble with warmth, regulation, hypothermia, respiratory distress, hyperreflexia, tremors, seizures. These things can go into this newborn behavioral syndrome, which is more common with antidepressant exposure in pregnancy.

This all kind of hangs together, I think with the chemical exposure to a developing fetus, and to the mom.

Moore: SSRIs are made such that they can cross the blood-brain barrier to get to the site of supposed activation, does that also mean that they can cross the placenta? Do we know that?

Urato: Absolutely. It’s a great question. I was discussing with that assumption but that’s an important point to make. They do cross the placenta. Studies have been done where we check the baby’s cord blood, we can sample and you can find levels of the antidepressant in the fetus. They are crossing over into the fetus during pregnancy and throughout development.

Moore: When you talk about the evidence supporting the risk of harm to the fetus from SSRIs, you are quoting papers in the big medical journals. So this isn’t fringe science, is it? This is well-established evidence that’s sitting in some of the biggest medical journals.

Urato: That’s exactly right. In fact, just recently, the CDC group on this put out data which showed a link to birth defects with the antidepressants, in particular venlafaxine, but also the SSRIs, as well. Venlafaxine (Effexor) is an SNRI. This is published in a big, mainstream journal and it is also on the CDC’s website for that matter. If you look up birth defects with the use of antidepressants, you will find that the CDC does highlight that study that did show the link.

Moore: You were talking about some of the behavioral issues that might affect babies that have been exposed before birth. I understand that the children born of mothers who were on antidepressants can experience neonatal withdrawal syndrome. I wondered if you had come across that, what might be the effects on the baby and how can it be managed?

Urato: If you think about these drugs, we know that they can affect serotonin signaling, they are “selective serotonin reuptake inhibitors.”

We can say scientifically that we know they affect the serotonin system and we know the serotonin system is crucial for the developing fetal brain. So if you put those two parts of the equation together, then you can conclude that there’s going to be an impact on the developing fetal brain from a fetus being exposed to an SSRI or other antidepressant throughout the development of the brain.

We see that right off the bat with the newborn behavioral syndrome. People also call it newborn withdrawal syndrome, but it’s believed to not be just withdrawal and the reason for that is we see some of these things right from the get-go. The other thing that points to that is that there’s a very interesting study that was done back in 2011. The lead author was Eduard Mulder, and he did a study where he looked at women who he knew were users of SSRIs and followed them using ultrasound of the fetuses. He compared them to depressed women not on medication and also to normal controls.

That group was able to demonstrate changes in ultrasound parameters, particularly with the behavior of the fetuses throughout pregnancy. For example, in the third trimester, the fetus exposed to the antidepressants was getting less non-REM sleep and they were more active.

So we can see some of these effects even in utero, which again, to me makes sense, you’re putting a chemical into the fetal brain that can affect the serotonin system. Serotonin plays a crucial role in the development of that brain and cell signaling. So if you’re doing that, you’d expect that you might see effects. We do see some of those effects in utero and then after birth, we see these effects.

Looking longer term, it gets harder to study and those studies are mixed, but there certainly is a signal for things like autism, ADHD, language processing, and motor function. Also, there’s been a recent paper, looking at gastrointestinal complaints, which, again, would make sense because of serotonin’s important role in the gastrointestinal system, both in the developing fetus as well as in adults.

I think that it hangs together scientifically that if you’re using this chemical that affects serotonin and if serotonin does play a critical role in fetal development, then there are likely to be complications and concerns with that.

Moore: Thank you, Adam, you make such an important point about the delicate balance needed to help people understand what the risks might be and to help them make the best choice for them and their child and family.

You’re a clinician, so when you are counseling a woman or a couple who might be thinking of having children, what do you tell them? How do you balance the need to give them informed consent, bearing in mind that they might not have had the information they needed when they first started on SSRIs?

Urato: So this is a really important point that I’d like to make. I think that this message and this counseling need to go out to women of childbearing age as opposed to trying to address it once the woman is pregnant. Maybe the major reason for that is that these drugs as we’re realizing more and more are very difficult to get off for many patients.

Typically, it’s hard to throw withdrawal into the mix with a patient who is newly pregnant and undergoing all of the challenges of the first trimester with things like nausea and vomiting, exhaustion, and the sort of changes in your life that occur when you get pregnant. So it becomes a very difficult conversation to try to sort through at the time of pregnancy at that first visit in that first trimester. This is a message that needs to go out to women of childbearing age and physicians who take care of women of childbearing age. I think you could argue it’s a message that should go out to everybody; what are the risks and potential benefits, what are the alternatives and so on.

I think that when they’re pregnant, I tell them that we don’t want them to suffer and I treat them with compassion, you don’t make them feel guilty for being on something and you try to individualize it. A lot of people look for the one size fits all answer, should women be on them or should women be off them? What’s the one size fits all answer? It doesn’t work that way.

If a woman is on a medication that she’s stable on, she’s doing well on it and she feels that if she comes off she’ll do poorly, she will be suffering, she won’t be functional, then that is something that has to be taken into consideration with the counseling as well as with her desire to stay on the medication. I have a lot of patients who do stay on the medication during their pregnancy and when they make that decision, I support them and I take good care of them.

The time that the drug is started, though, is where I think there needs to be this effort to let patients in general and in particular, women of childbearing age know the risks of the medication including the difficulty coming off of them. You may end up pregnant on this medication and with these issues of fetal exposure and potential pregnancy complications and fetal complications. I think that needs to be weighed more into the calculus than perhaps it is.

Moore: I read recently that antidepressant and antipsychotic use in pregnancy has doubled in the last decade. Should we be concerned about that? Should we be trying to ensure that informed consent for maternal-age women is somehow strengthened?

Urato: I look at this again through a lens of chemical exposure and just step back from it. If you’re asking the question that we’ve got a doubling of chemical exposure to pregnant moms and their developing babies, is that concerning? Absolutely. I think it’s important to take mental health seriously. I think it’s also important, as I was saying before to provide good care. But I think that, given the science, it looks like the longer-term outcomes are not the rosy picture that was originally painted of these medications when they came out.

Moore: We talked a little while ago about evidence of exposure harm being in the big, mainstream medical journals. So, with this knowledge within the medical community, I wondered what the response of the regulator, the U.S. Food and Drug Administration (FDA) has been to these issues.

Urato: It’s been woefully inadequate. I think that we are not doing a good job with drug regulation in our society and probably around the world. We’re dropping the ball on informing the public about medications and their effects.

We may get into talking about Makena. Makena is a drug that we have used in pregnancy for about the last 20 years in the United States. It’s a synthetic hormone that was being injected into women to prevent preterm birth. It was FDA approved in 2011. It was being used even before then, but subsequent evidence has shown that it doesn’t work, it doesn’t appear to actually stop preterm birth, and there are risks associated with it.

When you step back and you look at that, you say, “We’ve been injecting pregnant women with a synthetic hormone that doesn’t work for the last 20 years.” Something has failed there and I think it’s been a failure of drug regulation. I think we need better warnings for the public.

If you look, for example, at the labeling on the SSRIs or Prozac, there is a medication guide at the end of the label, but I think most patients and probably most providers aren’t looking at that and aren’t addressing all of those issues. I would recommend anybody listening to this podcast to read through that medication guide. The FDA is highlighting many of the problems with these medications but it doesn’t seem to be getting out to the public as well as it should so that people are more aware of these things.

Moore: I am one of those sad individuals that has read through the leaflet of the drugs that I had and there’s a section under the list of adverse events where it says “incidence unknown.” Of course, you could read that and think, “Oh, well, because it’s not known, it must be so rare that it is not worth capturing.” But actually, I believe that “incidence unknown” means it could be a major problem, but there’s just not enough research to prove an effect one way or the other.

Urato: I think that’s a great point. The “incidence unknown” shouldn’t be reassuring; it could be quite concerning that that’s there. I wanted to just highlight that in the medication guide, one of the things that they say before starting Prozac is, “Tell your healthcare provider if you are pregnant, or plan to become pregnant; it is not known if Prozac will harm your unborn baby.” That’s the unknown that you’re getting at there and that’s what patients always ask in the office. That’s what they want to know before they’re taking a drug or are exposed to anything.

Pregnant women will typically ask, “Can this hurt my baby? Can this affect my baby?” Pregnant women are smart about these things as far as trying to minimize exposure to things that could harm their baby. So I think that we need to do a better job at getting information out there that there is scientific evidence of harm and that needs to be put into the calculation for moms and families when deciding about these things.

Moore: You remind me, Adam, that here in the U.K. we did have a terrible experience in the late 1950s with the drug thalidomide. Interestingly, although our regulator (MHRA) didn’t block it, it was blocked by the FDA in the U.S. The fallout of that was just horrific and we must avoid any situation like that with a drug that causes such terrible problems for babies and mothers.

Urato: It’s very sad. As you said, the FDA was able to block that drug, but subsequently we’ve seen that they aren’t doing as good a job, and certainly not with Makena.

I talk about Makena a lot because it’s active right now but it was initially approved based on one very flawed trial from 2003. There were a lot of problems with that initial study but the drug was given accelerated approval in 2011. With accelerated approval, the idea is to get drugs onto the market that meet a significant need and preterm birth was a significant need. So they got it based on that one flawed study, but the idea was that the company would be required to do a confirmatory trial in short order to be able to demonstrate a benefit. But it didn’t happen quickly. This went on for years, where we kept giving pregnant women this drug until finally in 2019, eight years after the initial approval, finally, the second study results became available and showed that the drug didn’t work.

In the meantime, thousands and thousands of women had been exposed and the company had made billions of dollars off the drug, but what’s really disappointing is that even after 2019 the drug still hasn’t been pulled off the market. The FDA has called for it; there have been a few meetings. People think that it’s imminent that this is going to occur. But we’re almost four years after the drug was shown not to work and the confirmatory trials failed and it still hasn’t been pulled off the market. There are still women that can be injected with this ineffective synthetic hormone that carries risks.

Moore: I could be wrong about this but wasn’t there some issue about it being preferentially used for black women over white mothers, was that true?

Urato: I’d see that as just corporate or big pharma spin at its worst. The confirmatory trial failed, so they were trying to salvage it by saying that “Well, the first trial was done with a lot of black women in that trial and the second one was done with few black women. So we can look at this as a drug that helps black women and we shouldn’t take a drug off the market that helps black women.” They were basically using a racial equity argument, which I thought was misleading and unethical. The FDA had looked at both studies based on race and had not found that it made any difference.

In fact, the initial trial from 2003 did not show a selective benefit in black women. That was being done I think as a way of trying to salvage the drug or keep it on the market by using a misleading argument. Fortunately, it looks like the FDA didn’t buy it and we’re hoping that the withdrawal of the drug is going to be imminent. Although I’ve been feeling that way for the last four years. Hopefully, this is going to be coming in the pipeline soon.

I did just want to make a comment going back to something you had said in particular about pregnancy. Pregnancy is a time when there’s a lot of development and a lot of rapid change. So when you’ve got a rapidly changing or rapidly developing biologic system, it’s particularly sensitive to these chemical exposures that I’m talking about. So I think that’s why in particular, we’re so concerned with pregnancy for the developing baby, we can see harms because we’ve got a rapidly developing biological system that we’re then putting a chemical exposure into and I think that that leads to the possibility of more harm.

It’s interesting because another area where we see a rapidly developing biological system is sperm formation for males. When studies have been done looking at SSRI use in semen analysis, we see an effect. We see DNA fragmentation and we see lower concentrations and so that’s another example of a sort of rapidly developing process. Sperm are being subjected to chemical exposure and we’re seeing results from that.

Moore: It’s so important to have these discussions because if these papers are in medical journals that’s great, but for the average person in the street, they have little to no chance of actually getting the information they need to make some fundamentally important decisions for themselves and their families.

Urato: Trying to get the information for patients is a big problem and I think that part of that honestly speaks to the power of the pharmaceutical industry. Our system of regulation, as well as our system of informing the public has become rigged. And it’s being rigged by corporate and big pharma cash.

In an ideal world, you would have drug companies trying to come up with drugs and then you would have an aggressive academic community: universities, your experts, your specialists, who would really go over the data with a skeptical eye and would try to probe and ask: “Does this stuff work, is this going to be good for the public?”

So my vision of how this should be working would be your academic medical centers holding pharma’s feet to the fire. Looking carefully at these drugs, investigating and standing up for the public. And the FDA would function the same way. They would stand firm and strong for the public.

But what’s happened is that the FDA is funded by the pharmaceutical industry and many of the FDA folks leave the FDA to go work for pharma. It’s a revolving door and the same thing is true in academic medicine. Many of your leading universities are funded by pharma and the researchers are funded by pharma. So you end up with the pharmaceutical industry, basically creating what I would call a corporate conventional wisdom around drugs. Whether it’s Makena for preterm birth or antidepressants, the pharmaceutical industry creates that corporate conventional wisdom.

Typically, they roll it out with a story and with a spin. You’ve got a serotonin imbalance, we give you this drug and it corrects the imbalance and makes your life better and everyone’s life better. They roll that out and then they’re assisted in that rollout. Nobody would believe it if it were just the pharmaceutical company saying this. But when you’ve got your leading academic medical centers saying this, when you’ve got your experts saying this, and when you’ve got the FDA approving these things, it creates this conventional wisdom and this information for the public that’s going to lead to increased sales. And that’s the whole point of it.

The reason why the pharmaceutical industry is showering cash on academic medicine and showering cash on the FDA and the reason it works this way is that it ultimately leads to increased corporate profit through increased drug sales, which is what they’re aiming for.

That doesn’t work best for the public. So we need to get back to where the medical establishment, that would be the physicians, academic medical centers, the researchers, the FDA, the CDC, where these folks are all working on behalf of the public, rather than on behalf of big pharma and the device makers.

Moore: Do you think there’s a chance of that change happening? There’s so much money generated in sales that the pharmaceutical industry can buy power and influence. I think it’s one of the largest lobby groups in Washington.

Urato: I think that solving this is challenging. Getting independent voices out there like this is important. And I think having a wary, skeptical public does help with this. And at least from what I’m seeing, just in general and also in my office, I think the public has become informed and is skeptical and wary. I think that they feel like “Oh, all these people are being paid by the pharmaceutical industry” and it creates a lot of skepticism. I think you’re seeing that that’s becoming more prevalent in society where people just aren’t buying these recommendations.

You can have a recommendation from the FDA, the CDC, or the leading medical societies that you need to take drug X, Y, or Z or whatnot. The public will often say, “No, we’re not going to do that.” And I think we’re starting to see this disconnect between these official recommendations and what the public is thinking.

You can only play the game where you’re paying the regulators, you’re paying the researchers to get the result you want, for so long before people realize it’s a rigged system. I think that there are a lot of people that are becoming more and more aware of that, and are looking for unbiased voices in this and trying to drill down and figure out what the actual accurate information is.

Moore: Is there anything else that we hadn’t touched on that you thought it important to share?

Urato: I think probably the biggest thing is this issue of separate questions. The discussion of what an antidepressant is doing to a developing fetus is an important one. And it’s a scientific one and it has to do with chemical exposures and embryonic and fetal development. But that is a different question than whether a given individual mom in my office or any office should or should not stay on her medication during pregnancy.

Pregnant women with mental health issues deserve compassionate treatment and good care and shouldn’t be made to feel guilty or ignored. And the counseling needs to be thorough and comprehensive and supportive. So my concerns about fetal exposure are not meant to, in any way, disregard the importance of mental health or ignore a pregnant woman with mental health issues or not be sympathetic or compassionate to them. That being said, I do think it’s very important for accurate counseling for women to be able to get information about the effects of these drugs on developing babies.

The second thing I would say is important is the point that we’ve made several times, which is that chemicals have consequences. Don’t forget when you’re taking medication as a patient, when you think about medications, the drugs are synthetic chemical compounds, they are made in chemical manufacturing facilities and they’re going into your body, and they’re typically going to have widespread effects. So it’s important to keep that in mind.

I like to joke when I give lectures on this that in the food industry the orange juice makers, want to show in their ads the orange trees and it comes right off the tree, right? You don’t see that in the drug commercials. You get the people in the bathtub and the ocean and whatnot, but you’re not seeing the chemical manufacturing facility where everybody’s dressed in the white chemical suits and the goggles and shields making the chemicals that are ultimately going into your body into your brain and other organs. So it’s very important to keep that in mind as a patient as a citizen as a consumer these are chemical compounds and they have chemical effects.

Then I guess the last thing I’d want to emphasize is that this important talk needs to happen with women of childbearing age before pregnancy. We want to address these things not when they come in at 8 weeks or 12 weeks pregnant. You want to be addressing these things earlier and addressing it in general trying to inform the public about the risks, benefits and alternatives to antidepressants specifically, but also medications in general.

Moore: You’ve done a beautiful job of explaining the science for us and telling us how important it is to have a human approach to these issues when you’ve got someone in front of you who needs advice and who might have to take some difficult decisions. And I also can’t imagine it’s very easy to be a critical voice and to speak out on these issues given the resistance encountered, so thank you for all you do.

Urato: I appreciate the opportunity and being able to get the word out on it; thanks for giving me the opportunity.

 

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Chemicals Have Consequences—Antidepressants and Pregnancy: An Interview With Adam Urato, MD appeared first on Mad In America.

]]> https://www.madinamerica.com/2023/02/chemicals-have-consequences-antidepressants-pregnancy-adam-urato/feed/ 4 https://www.madinamerica.com/2022/12/ten-years-rocking-boat-mad-america-mission-work/ https://www.madinamerica.com/2022/12/ten-years-rocking-boat-mad-america-mission-work/#comments Wed, 21 Dec 2022 11:01:45 +0000 https://www.madinamerica.com/?p=240894 Continuing our 200th podcast, staff members join us to discuss reinvigorating MIA continuing education, science writing and blogs, personal stories, community commenting and family resources.

The post Ten Years of Rocking the Boat: Reflecting on Mad in America’s Mission and Work appeared first on Mad In America.

]]> Today we are continuing with our look behind the scenes of Mad in America for our 200th podcast. Mad in America got started in January 2012 and so to celebrate a decade of critical comment and appraisal we thought it would be interesting to reflect on Mad in America’s mission and work by speaking to the people behind the scenes, who keep it running day-to-day.

Before we move on to our interviews, I want to pay tribute to the people at MIA who couldn’t join us for these interviews for one reason or another. Susannah Senerchia is our Assistant Editor and amongst other things, manages our Around the Web section. She is always finding interesting articles from the corners of the internet that help to tell of a shift in thinking about mental health. Also, of course, Mad in America relies heavily on the science news team as we discussed in part one of this podcast and for overview, we have our Board consisting of Robert Whitaker, Kermit Cole, Louisa Putnam, Olga Runciman and Claudia Esteve.

So, on to our interviews and later we will hear from science writer and blogs editor, Peter Simons, personal stories editor, Emmeline Mead, community moderator, Steve McCrea, and family resources editor, Miranda Spencer.

First, we hear from coordinator of our continuing education webinars, Carina Ruggiero. Carina tells of her journey off anti-anxiety medication (SSRIs) and finding Mad in America and how we are reinvigorating our continuing education efforts.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Thank you so much for joining me today for this 200th episode of the Mad in America podcast. I wanted to start by asking about you and your journey. What was it in your life that brought you to Mad in America?

Carina Ruggiero: Thanks for having me, James. The background to my story started when I was a kid, from about the ages of 9 to 13. I had several deaths in my family and friends circle; then my mother got brain cancer. During this time, I was experiencing panic attacks and nobody knew what they were. It seemed like a medical problem. Now the term panic attack is ubiquitous, but at the time, it was rare to know what was happening.

So I was going to the doctor and doing all these tests. In the end, they diagnosed me with a panic disorder. Unfortunately, they told me that this was a chemical imbalance in my brain, which we all know now is not true and it’s very disempowering. So, I’m this 13-year-old girl that gets diagnosed with a chemical imbalance. They tell me the fix is to take a pill to correct the chemical imbalance and so that’s what I did.

I went on to live a very “normal life.” I had a career, friends, marriage, all that good stuff. But something always felt not right to me. I ended up staying on this medication for 22 years .. . I always felt like I didn’t need it, so I would just try to get off it. I’d taper off as the doctor said, but I would go into withdrawal every time. The unfortunate part about that was that I didn’t know it was withdrawal.

Then I would go to the doctor and they would tell me that I needed the medication so I stayed on for 22 years. About 17 years ago, I started meditating because I was searching and feeling like something just wasn’t right for me. I started to go on this kind of soul search. I went off and on that path for a long time. I would go through periods where I’d meditate and do yoga and all this stuff and I gained a lot from it.

But in the last few years, I started to get deep into it and I had some very profound, spiritual experiences. I knew that the greatest thing that I wanted to do was get off this medication. I just hated being dependent on it. When I was trying to get off before, I had searched and searched and searched for stories of people who had been on long-term and gotten off. I could never find success stories. They were really hard to find.

Anyway, back to this spiritual experience. From my soul, I made a decision and it’s probably one of the most powerful decisions, if not the most powerful, that I ever made. I decided that I do not care if no one else on this earth has gotten off of this, I am going to do it.

Surprisingly, after that, I found a lot of stories and information that I needed and so I found people who had it much worse than me, who had come out triumphantly on the other side. People like Laura Delano, Will Hall, Baylissa Frederick, Michael Priebe, Ali Zeck and Greer Adams. There were all these amazing stories and I learned about withdrawal. I thought, okay, now I know what’s going on. I’m getting off this medication, I’ll probably have to go through some withdrawal, but it’ll be okay because I know what it is.

I tapered off over a six-month period, which now I know is way too fast for anybody listening. I went into a severe and protracted withdrawal that I was not prepared for. But I did it and now I’m on the other side, and I will just say that the other side is so beautiful, so much fuller and I’m so much happier than I ever was on the medication. I know myself so much better.

For anybody going through withdrawal right now, it is hell on earth. It is horrific. I don’t even have words to describe the experience. But I just want to reassure you that I believe that everybody heals. Some people get off easy, they don’t even go through withdrawal. Sometimes it takes years, sometimes it’s in between. But I do believe everybody heals. There’s so much beauty on the other side.

Moore: Thank you for sharing that, Carina. What an incredibly frightening experience for a young girl to have at 13. To see illness within the family and then to be made to believe by doctors that it was something wrong with you on top. That must have been such a confusing mix of emotions for you.

But to get off the drugs after 22 years, I don’t think many people out there who haven’t experienced it themselves know the challenge that that presents. I’m so glad that you made it through that period.

Ruggiero: Thank you so much, James. I feel very lucky to have done that.

Moore: Could you tell us about the kinds of things that you do with Mad in America?

Ruggiero: My background is in business operations and I do various operational, admin, and HR pieces. But the main thing I focus on at Mad in America is our live online events and our continuing education efforts. I do those in partnership with Kermit Cole, who is one of our founding board members and he’s also our new director of continuing education.

I think the best way to describe it is in two categories. We have our continuing education program and that was developed before my time as a way to get some of the science around mental health that is not so well known out to the public. The target audience for continuing education is professional groups and mental health professionals, although we also have a lot of survivors and members of the general public that use these courses as well.

There is so much science that is not yet used in the healthcare system and there is also a public narrative that does not match up with the science. The continuing education program was meant to get more of this information out.

We’ll have various leading practitioners, researchers, professors, and mental health professionals present on various topics. These events support our mission to discuss a shift in the current paradigm of mental health care because right now it’s so focused on medicating and especially medicating for the long term.

So we have that. And then we also do online events, which sometimes we refer to as town halls, and those are more community and discussion-based, often with live panels. Sometimes we’ll do a film screening or talk about different initiatives.

We aim for one every month or couple of months. We’ll work with the presenters on the format, the questions, the main points. And then I will also do all the coordinating behind the scenes so that the marketing, the logistics, and everything is running smoothly.

James Moore: I’m excited to see the continuing education part of Mad in America get up and running again. I think continuing education is an incredibly powerful tool for stimulating a conversation about change, isn’t it?

Ruggiero: Yes. I think why it’s so important too is because a lot of the continuing education programs are indirectly funded by pharmaceutical companies and so they are very skewed. We really set this up to show a different perspective.

Moore: Given your personal experiences and then discovering Mad in America and other communities, I wondered if you’re thinking about how mental health has changed through those experiences.

Ruggiero: Absolutely. It’s been a whole process, but what I can say at the highest level is that when I was 13, I believed I had a brain dysfunction that needed to be corrected by a medication that I would have to live with my whole life. I went from that to a completely different view now where I don’t believe that anxiety and depression are a chemical imbalance in the brain. I now trust my emotions. Back then I thought, okay I need to manage away all my negative emotions and chase the good ones. Now I have a deep respect for the full spectrum of emotions. I trust them, they have wisdom and they’re pointing me in a certain direction. They are like my inner compass telling me something.

I don’t want to make a blanket statement that medication is never helpful, because I know people who have found it to be helpful, but it is not curing a chemical imbalance. We need to have informed consent and be aware of the risks because it is, in my opinion, very wrong to be putting a child on these medications. I went essentially from this model of dysfunction to something much more empowering.

Moore: When we were talking before this interview, you mentioned that attending an organized retreat had been important in your recovery. Is that something we can talk about?

Ruggiero: I love talking about this because it changed my life. The retreat is called Path of Love. I participated in it twice and I just got back from working at it. It is amazing, I don’t even have words for it, but it was so key in my healing journey. I have never experienced so much powerful love in one place. There are so many people there that are searching for something. A lot of them have been through really traumatic experiences. Some are just not happy with the way their life is going. They are just looking for deeper meaning in their life.

It’s a seven day process you go through but it’s not in-your-head talk therapy. You’re doing a lot of the processing through your body. There are trained therapists there that will be asking what you feel in your body and what kind of emotions are you feeling. You’ll role-play and physically act out things. It’s amazing to watch because a lot of people will have physical releases where their body will start trembling, they’ll have muscle spasms, all these things. Just having worked there watching the people walk in at the beginning and at the end of the seven days, the change is phenomenal. The way the person looks is different. Their body, the way they hold themselves, their voice, everything is changed. It’s almost unbelievable.

Moore: Thank you so much for sharing that, Carina. I think the power of communities is perhaps one of the most important things in so many people’s recoveries. I like to think that Mad in America for some people does provide that community. I hope that in some way it can help people to come to terms with some pretty horrific experiences and hopefully some healing can come from that.

Ruggiero: I agree. Community is one of the keystones for healing and Mad in America does provide that. I respect so greatly that the organization is about seeking truth and listening to all sides. There’s no cancel culture here. Bob has set the tone to invite all parties in and have discussions, so we can come to some kind of shared understanding. I appreciate that and love working with colleagues like you, James.

***

Next, we hear from Peter Simons. Peter is our blogs editor and science writer. He talks of his dissatisfaction with the story of settled science that he encountered as a post-graduate psychology student.

Moore: Peter, welcome. Thank you so much for joining me for this 200th episode of the podcast. Could tell us a little bit about yourself and how it was you came to know about and join Mad in America in the first place?

Peter Simons: I came to MIA through an academic and research route. I studied counseling psychology, I have a master’s degree in it and I worked as a therapist trainee for many years. I did three years of a PhD in it and published research in the field. But I just kept running into situations which contradicted the story that we were told.

I went into the field because I believed in it. Then, basically, every situation I was in contradicted the mainstream story about why people are in distress and what psychology and psychiatry can do to help. I was doing a lot of searching for an explanation of why I kept running into these situations that defied the expectations that I had when I went into the field. I think a lot of people only see what matches their expectations.

I have what I think of as my heroic flaw. It’s a failing in that it makes my life a lot more difficult sometimes, but it’s also something that I like about myself, which is that I never stop asking questions. Sometimes that undermines the assumptions that I based my entire life on. This is one of those times where I went into this field to make it my purpose in life, to become a psychologist and help people using the mainstream understanding of psychology. But I couldn’t stop asking questions, and eventually, I asked enough questions that the whole assumption that the field is based on sort of broke open for me.

That’s how I ended up doing a lot of critical psychiatry stuff, particularly in my doctoral program. That led me directly to Mad in America. I read Anatomy of an Epidemic first and it was the first time that I had seen somebody make a coherent argument for anything in psychology and it just happened to be a critical argument. But I had to juxtapose that against all of my classes, which had this extremely surface-level argument, where as soon as you asked a question, the whole thing fell apart.

Then I read Bob’s book and it was an argument where if you asked a question, you got an answer. That was the big step for me was finding any sort of argument that made sense, so that led me to Bob and Mad in America.

My main focus is trying to find that argument. What is the argument that makes sense? And what is the argument where when people ask you a question you have an answer to it? As a researcher and science writer, I am trying to ask those questions, which I think is something that doesn’t happen in journalism for some reason. In science journalism, it’s often just taking at face value whatever is in the abstract of a study, or whatever the researcher about this study tells you. No digging into it at all.

I think a good example of that is I wrote an article recently called the Serotonin Zombie, about this study that purports to bring back the low serotonin hypothesis of depression. But as soon as you read any of their data, it’s just not there. It was appalling to me that this was presented in The Guardian with quotes from the authors as if it’s like this groundbreaking thing that found low serotonin. I always go into this and I think “oh, really, wow, that would be great, please restore my faith in this. Bring me back to like the point where this was my purpose in life and I was going to be a psychologist. If that could happen, that would be great just to have all the answers.”

I looked into the data and they had three hypotheses. One of them was: Do people with depression have low serotonin? The answer was no, there was no difference. Then another hypothesis was: Is it based on the severity of depression. Do people with extremely severe depression have low serotonin? The answer was no again, they did these tests and found it wasn’t true. Then there’s a third hypothesis: What happens if we dose people with this (other) drug–how does their serotonin respond? The data was bad, this is a tiny study where there’s one outlier driving the statistics. But it’s like that’s not even what we care about. Who cares how somebody responds to being dosed with a weird drug? All we care about is do people with depression have low serotonin compared to people without and the study says, “No.” The data says it’s the same.

But it’s reported on as if this is some groundbreaking finding of low serotonin. It’s situations like that, which are appalling to me, that drive me to write about these things for Mad in America. As a doctoral student, I would read these studies and ask “how is that, how are you reporting that?”

Moore: Can you tell us a little bit about your role at Mad in America? You’re a science writer, so can you describe how that process works?

Simons: I came to Mad in America as a science writer initially. I write one science article a week, which is not an opinion piece, but a summary of what a peer-reviewed piece of literature says. The difference between that and science writing that you might see in another publication is that I look at the data first, which is what you’re taught to do in an extremely critical doctoral program. Look at the data, then read the abstract last because the abstract is full of spin. Look at the data, draw your own conclusions, and then go and look at the abstract and their conclusion. How did the authors report this?

I think that’s the big difference between the science writing that we do, and not just me, but all of our science writers have that perspective versus science writing in a less specialized outlet, where the person doing the science writing probably doesn’t have the background to even understand the data. They have to go by the abstract or go by what the researchers are telling them. I enjoy digging into the research data and telling that story.

Then as I’ve worked at Mad in America, my area has broadened so that I’m also the editor for blogs, which bring a different perspective because they are opinion pieces. It expands into what do we do with studies that we see this data coming from. What does that mean for our society, for the culture of therapy, the culture of psychiatry, and the culture of pharmaceutical drugs? How do we reframe our ideology when this is what the data says? I enjoy helping people to tell that story which has a lot more context, I think.

Moore: The blogs are hugely important because that’s where the science meets real-world lived experience. That’s where you can see the impact of good or bad science on people’s lives. Surely that’s the most important thing is not getting published in a journal but is this helping the life of a person in the street?

Simons: Yes, exactly.

Moore: I think we’re tremendously lucky to have you, particularly with your enquiring and questioning mind. Thank you so much for the accessibility that you give to science that might be hard for people to get otherwise.

I wondered in the time that you’ve been involved with MIA has there been a particular piece which has stuck with you? Or a piece that you regularly refer people to, or changed your thinking about things?

Simons: I don’t know if there’s any one specific piece. There was this big article, I think it was in the New England Journal of Medicine, that looked at published and unpublished trials of antidepressants. That’s something I share with people all the time because there’s this idea in the general population that the FDA wouldn’t have approved things if they weren’t shown to be effective, for instance. There’s this trust in government institutions which is a little surprising, but it happens.

This article is a good example of when you look at all of the data, half of the antidepressant trials failed and the other half showed a tiny difference over placebo. It’s not even as if half of them failed and the other half were huge successes either. But that’s the surprise because we only hear about the positive trials. Those are the ones that get published.

It also ties into the way that the FDA makes decisions. It used to be we needed a couple of really good studies showing a positive effect and also it doesn’t matter how many negative studies there are and how many bad effects there are. But at least we needed a couple of good studies first. But now everything is getting approved through a much faster process, which uses proxy outcomes and uses only one study that shows an effect and we’ll use all these other studies that aren’t good RCTs to just provide context that this works. The approval process is getting worse and it wasn’t good to begin with. That’s something that I share with people a lot.

One of the studies I saw early on in my doctoral program was a great example of how the abstract of studies is spun by the researchers. It was a study that compared an antidepressant with St. John’s Wort and a placebo. Three different arms: one of them a placebo, one a natural remedy in St. John’s Wort, and one the antidepressant. The abstract for the study says that they found that St. John’s Wort was not effective, it was the same as a placebo. But then you look it again and they don’t even mention the fact that there was an antidepressant arm. So I thought, I can see an antidepressant arm, yet that’s not reported in the conclusion.

You look at the data, and it says that the antidepressant arm did the worst. It was the antidepressant worst, St. John’s Wort second worst and the placebo did the best. It’s studies like that then don’t even make it into the antidepressant literature because the conclusion doesn’t have anything to do with antidepressants. But the data does. The data shows that the antidepressant was terrible, worse than a placebo.

Moore: Since you’ve been with Mad in America, has your thinking about the whole mental health industry changed, or has it just confirmed the feeling that you had during your studies that things weren’t right?

Simons: I would say it’s confirmed it. I think for me, the sort of aspect that I’ve come to is that I think there’s a reason that psychology and psychiatry exist. People are in distress. No one’s arguing that people aren’t in distress. People want answers, and people want to feel better. I get that and that’s what led me into the field in the first place. And I think that there may even be a space for a version of therapy. But it’s not a science—that’s the problem. I went into it thinking it was going to be a science, and that’s how it’s presented. But the data is just not scientific in any way. What there is, I think, is a philosophy and philosophy can be helpful for people. I think you can make changes in your life because you investigate your own ideology and decide what is meaningful and look for purpose in your life.

I think that if the field of psychological therapy thought of itself as a philosophy more like life coaches than like a scientific or medical field, I think we would all be better off. I think there’s a space for that and I think it can help people. But when you present it as a science, people are going to keep questioning it. When you don’t have the evidence to back it up, it undermines everything that might even be good about the field.

Moore: Peter, thank you. I just want to reiterate how many people out there value the work that you do because you make impenetrable science available and accessible to people. If we’re going to have a societal discussion about where the science fails us, then surely we have to bring people into the tent and your writing does that. Your writing allows people to be part of the conversation.

Simons: Thank you, James.

***

Now I am handing over to Bob Whitaker who spoke with our personal stories editor, Emmeline Mead. Emmeline has been with MIA since 2014 and she shares with us some of her experiences over those times.

Bob Whitaker: Emmeline, you have been with Mad in America for many years. How did you first find us?

Emmeline Mead: I first came to work with Mad in America in 2014. At the time, I had been working with a radical mental health peer support organization called the Icarus Project for a number of years, first as a volunteer and later in a paid position.

They had a web forum that served as a sanctuary for this little community of lost souls and visionaries who were all helping each other through their struggles. I showed up there like a Prozac poster child with no critique of the mental health system or the illness narrative—no idea that it was something you even could critique. But people in that forum gently challenged my views and I came to understand that all these things I’d assumed to be medical fact were actually highly contested social constructs.

It wasn’t hard for me to make that leap because I’ve always been skeptical of authority, and also, it was pretty clear to me that I was only depressed because bad things kept happening to me. I had lived through some pretty nightmarish stuff like the suicide of a parent, being a foster kid, and being homeless after I aged out. To not be depressed would have been crazy. So all the broken-brain, chemical imbalance stuff, logically it just didn’t add up for me. I believed it but I was never really sold on it.

Somewhere in the midst of this, I stopped taking the Prozac, the last psych drug I would ever take. I hate to say it but I did not taper, and it wasn’t even a conscious decision to quit, really… I just never got around to refilling the prescription ever again. Prozac is infamous for sort of plopping a new personality down onto a person, and that personality might be more cheerful and outgoing and better at functioning in the world but it’s not who you really are. And after a while, that disconnect can make you feel like a zombie, and you want to die because you’re no longer in touch with your own soul. Eventually, some subconscious part of me just rebelled and said enough of this.

So that’s where I was at when Anatomy of an Epidemic came out. That book opened my eyes in so many ways but it also confirmed things that I already suspected. Over the years at Icarus, I had noticed that the people who seemed the most emotionally stable were often people who had left psychiatry behind, whereas the most devoted pill-takers often struggled with crisis after crisis. Anatomy gave me a framework for understanding why that might be.

You were touring with the book and did a reading in my town, and we met and you signed my copy. Then some years later I heard you were looking to hire a new moderator for the comments section, and since I had a lot of experience with moderating the Icarus forums, I applied and joined the team as community manager. I think there were maybe three or four of us running the website back then.

Sometime in 2015, Laura Delano, who was the personal stories editor, left and I stepped up to take on that work. Later I also took on the blogs editing when Kermit needed to step back, and the weekly newsletter when Justin needed to focus on the research news team. I would pretty much step up to do whatever needed doing and eventually found myself in the position of managing editor, which I was pretty proud of. But putting out five blogs and personal stories a week, every week, plus the newsletter and other tasks, by myself, for years… ultimately it was just too much and I wound up needing to take a leave from work. When I came back, I took on a much more sustainable workload. The personal stories were always the closest to my heart, and so that’s the main thing I do now.

Whitaker: Emmeline, these stories are often filled with a great deal of pain, a great deal of loss, a great deal of trauma. I wonder how you as an editor respond emotionally to the stories.

Mead: Overall, I have to say the work is pretty fulfilling… like you said, if you have meaningful work in life, consider yourself blessed!

For me, it’s an honor to be able to help people bring their stories to the world. A lot of these authors have dealt with a lifetime of their reality and their suffering just being dismissed and twisted and misinterpreted. The entire system of psychiatry is just an elaborate form of gaslighting, really. And so, having their story read by thousands of people might be the first time they were ever really heard and validated, especially by a community that understands the struggle. That can be pretty powerful. It’s important to me that each story shines.

But there can be a darker side to doing this kind of work. You once commented how I probably know more about how psychiatry hurts people than anyone in the world. I don’t know if that’s true, but I definitely know a lot about it. And the thing is, you can’t be so close to so much pain and not be affected by it, you know, not have it leave a mark on you. There’s a degree of vicarious trauma involved—for all of us at MIA, I think.

There have been stories I’ve edited that moved me to tears and haunted me for weeks. To work with those stories you have to be able to feel that, and hold that, and kind of sit with those shadows and those ghosts and bear witness and honor them, but you also have to take care of business and write emails and get the next story out. It’s tough. You need to keep your heart open to do this work, but you also need a thick skin.

Whitaker: What would you say you have learned from those stories? What do these stories collectively tell us, the listeners? What do we learn from them?

Mead: Psychiatry ruins lives, I guess would be the main theme. Our personal stories archive, I see it as a body of evidence, a growing record of the harm done. But it’s also a record of what helped, and how people were able to heal and recover. It offers both a warning and a source of hope.

One thing I see in the stories is that, like me, people usually had good reasons for any extreme states of mind they were in. And they usually know what those reasons are, not only after the fact when they’ve had time to reflect on it but also sometimes while it’s happening. Like they’ll be dealing with bullying, abuse, poverty, trauma… sleep deprivation, social isolation… racism, sexism, all the other isms… toxic diets and environments and relationships. Being scapegoated by their family is pretty common. Often a major life change such as a death in the family, a divorce or breakup, or losing a job is a precipitating factor… even something generally positive like leaving home to start college or having a baby.

Basically, these emotional states didn’t come out of nowhere. They were natural reactions to the struggles of life that might have resolved with time, but once a person’s given this hopeless prognosis and a bunch of pills it all becomes chronic and entrenched.

Whitaker: There are people whose lives have been deeply affected by psychiatry—its diagnoses, its treatments, and commitment laws—who are never going to submit their own stories. Is there a way to reach them? What do you think we would hear from them?

Mead: This is something we’ve wrestled with for years—the missing voices and how to reach them. Obviously we want the personal stories to be as diverse as possible, to show all the different ways that psychiatry harms different people.

I don’t know how to reach the people we aren’t reaching but there’s a few things I’ve been thinking about with that. When we want people to submit their personal stories, we’re offering them something—a platform where their voice can be amplified, a community they can connect with that can validate what they’ve been through, and an opportunity to help bring awareness and change. But we’re also asking something of them.

We’re asking them to be very public about very painful, private experiences… we’re asking them to risk being retraumatized by reliving those experiences, and then having to arrange it all in a coherent and palatable form in a 2000-word essay. We’re asking for emotional labor.

Maybe for some people it’s too big of an ask. Maybe they’re not in a safe enough place where they could do that even if they wanted to.

Whitaker: Emmeline, it’s been great having you work for Mad in America for nine years. Let’s hope you are with us for another decade.

***

Next, we hear from Mad in America’s Community Moderator, Steve McCrea. Steve shares with us how an early experience with therapy led to his interest in alternatives to psychiatric treatment.

Moore: Steve, welcome. Thank you so much for joining me today for this podcast where we look behind the scenes at Mad in America. I believe that you spent time as a psychological therapist, could you tell us about that and then how you first came to know about Mad in America?

Steve McCrea: I’m going to take you back a little further than that. I will say that I first got interested in therapy when I went into my own therapy in my twenties. I had a very good therapist and we looked at childhood issues and current relationships and how I could become more empowered and take charge of my life. It was a really good experience for about a year and a quarter. And my therapist said, “You know, you’re kind of a natural at this. You might be a really good therapist.” So I ended up having that in my mind. I was into science in college, studying chemistry. I ended up becoming a teacher after doing some work in the chemical industry and realizing it was incredibly dull.

But then I couldn’t find a job teaching and so I found this job working at a teen moms’ home that paid like dirt. I was doing the overnight shift at the teen moms’ home for like $800 a month. That got me into the field and I discovered I was very good at it, I was pretty natural at putting people at their ease. Getting them to feel safe talking to me and helping them figure out what they would do instead of what I would do. And I thought one big advantage I had was that I had no training whatsoever in psychology when I started.

So I was thrown back on what did I know, right? It’s like, here are these girls acting crazy and being hostile and angry and whatnot. And I’m like, well, what do I know how to do? Well, I know how to listen. I ask questions, I empathize, and it turns out those are all the kinds of things you need to do to be a good therapist. So that’s how I got into the field. And that was back in about 1986.

And I’ve had a bunch of different jobs since that time. I had a great job as a crisis counselor on a mental health crisis line. Then I ended up going into a job where I was doing involuntary detention evaluations. And that’s where I discovered what went on in the bigger mental health world. I was living in my own little bubble where I’m doing my thing and the people I’m talking to are feeling good and this all seems good. But I started to get to see what happened to people when they went into the hospital. And that’s when I started feeling like I can’t continue doing this kind of work because I was seeing how the system was treating people. And it was very different from what I knew to be helpful.

Moore: Was that a shock to witness that kind of treatment?

McCrea: Honestly, it wasn’t entirely a shock. I had always been kind of a maverick from the beginning. When I first started at that teen moms’ home, there was not one person on any kind of psych medication for anything. It was all positive peer culture.

We were trying to teach kids to think about things differently and to create a community with each other. Teaching them Carl Rodgers type statements, all that kind of good stuff. And it had its moments where it felt like it was pretty effective. But there were no psych drugs back then. Then when I moved to a job at a day treatment center and we started seeing Ritalin show up. There were kids who were on Ritalin and I didn’t see that that was very effective. I had my own views on that kind of thing.

So as time went along, I saw more and more reliance on psych drugs and less and less on actual human relationships. And that I think is what started making me pretty skeptical. But I still kind of felt up to that job. I still kind of felt like I was still doing good things, kind of like behind enemy lines as it were. And I was still able to have some control over the jobs that I had and control of the system. But when I got into that job, it was pretty clear how systematized it was. And honestly, when they went to the hospital, the only thing they gave them was drugs. And they just gave them drugs until either they acted like or said that they were okay now and then they would send them home.

And there seemed to be no concern for their quality of life or what the drugs did to them or didn’t do to them. And, you know, the big emphasis on the social workers was to keep the people taking their drugs. So that just pushed me to the point of thinking like, this isn’t a salvageable situation. It wasn’t stunning to me that it happened. It just got me to the point of thinking that these people aren’t doing this because they don’t understand, that this is how they do business. This is the core of what people do, and I do not fit in with this model. Ethically speaking, I felt like I couldn’t keep doing this.

Moore: And so what was it then that led you towards Mad in America?

McCrea: I had always been interested in alternative looks at the reality of the mental health world. I started looking at websites and I ran into MindFreedom. I ran into one called ‘Death by Ritalin’ or something like that and I started getting the idea that there were a lot of people being harmed by these things.

And I went to a book lecture where Bob showed up and he was talking about his book and I was just really impressed at that time. I had also joined in with a group called Rethinking Psychiatry, right about that same time in Portland. And that group contracted to have Bob come and give a speech. And so I got to know more about Bob and the book.

It was probably right about that time I started looking at Mad in America. And I really liked the community. The thing that struck me most was that it was a space for people who didn’t feel that the accepted paradigm was working for them. And it was okay for them to say that and speak about that. So it was great to see a website where people would just come in and say whatever they thought, and that was all considered okay or encouraged.

Moore: Could you tell us a little bit about what you do for MIA, what is your role?

McCrea: I am the moderator for the comments section. I spent a lot of time in the comments section before becoming the moderator so I had some relationships with some of the people who were regulars in there. And so it was a fairly smooth transition to take over that role. I retired in 2016 and I was looking for something that was very part-time and online where I didn’t have to commute or anything. And this just seemed perfect to me. And it has been, it’s been a wonderful place for me to land.

Moore: It strikes me that moderating comments is one of the most challenging tasks to do at MIA because there’s such breadth and depth in the discussions and it’s a role that requires tact, diplomacy and empathy. It’s difficult to balance so many differing points of view but you do it so well.

McCrea: Well, thank you. I appreciate that. I do a second side job as a soccer referee and the skillsets are similar.

Moore: Hopefully not too many red cards in the forums!

McCrea: We tend to avoid the red cards but every once in a while you’ve got to throw one out there.

Moore: Has your view of the mental health landscape changed over the years or have your experiences just confirmed your early suspicions?

McCrea: I wouldn’t say that it’s changed my viewpoint on things. If anything, it’s solidified just how bad it really is for someone who is stuck in that system and doesn’t have any outside perspective. I don’t mean to denigrate people who do use the system and find it helpful. I think that’s fantastic for them and I’m glad they’re able to make that work. But I think the main problem is that you’re given a certain story and you’re expected to believe that story. And when people start stepping outside of that and saying “Well you told me this was going to work and it’s not working,” people are mistreated and abused for trying to figure out what’s going to work for them rather than being treated with respect.

I’ll give you a quick story of when I was on the crisis line. I had this woman call up and she was frantic. For well over a year she had been trying different antidepressants and it just wasn’t working. She said “I just, I feel horrible. I feel like there’s no hope. I feel like I tried this and I tried that and I keep being told well just wait. It takes a while and then we’ll try a different drug et cetera and I just feel like it’s going to be like this forever.”

And so I said, “Has anybody ever told you that there are other things you can do for depression besides drugs?” And she is silent for a moment then she says, “No.” I said, “Well, there are.” She says, “Oh, well that’s good!” And so we immediately went into a long discussion about various other options that she might have. And I thought, how sad that this woman has been banging her head against the wall for a year. And nobody’s ever bothered to tell her that there are support groups, there’s therapy, there’s stuff you can read, there’s meditation. There are actions that you can take that actually could help you that don’t involve taking drugs. And she had no idea that that was a possibility because that’s what she was told.

Moore: That’s so sad, isn’t it, when the mainstream messaging is dominated so much by the psychopharmaceutical complex that people can’t see the wood for the trees because it’s all the same wood and the same tree.

McCrea: Exactly, and there are people who come on who are positive about their experiences, and we have no problem with those people having their voice too. But sometimes they get upset when they encounter disagreement from the community, however respectfully that might happen.

Moore: Steve, thank you. Was there anything else important that you think we should share with people listening?

McCrea: I guess the one thing I would say is that even within MIA there is this constant tension between the professional person viewpoint and the survivor-person viewpoint. I think that that conflict is central to why the whole system kind of doesn’t work. But even within MIA, you see that people get sort of higher marks when they do a blog because they have some credentials, right? And they are sort of held as being more credible somehow than the people who are just reporting on their own experiences.

And some of them [the survivors] have done a tremendous amount of research and know more than a lot of the professionals about what they’re talking about. But it’s that power imbalance there that I think MIA is trying to address. But there’s a point at which the survivors themselves have got to be the driving force to make this whole thing change.

I think MIA is a great place and I love the fact that this education happens for people who don’t know anything about this. I love the fact that it’s a great forum for people who have been harmed by the system to talk about what happened to them and how they feel and look into alternatives. But as long as we have this power imbalance where people who are degreed professionals or whatever get more credit than the people who are supposedly trying to help, I think we are going to keep having this struggle. It is one of the main things I had to address in learning how to be a good therapist. And like I said, I was fortunate I didn’t have any training, so I had no sense that I knew something that these people didn’t know.

But stepping down from that power position and being willing to listen is hard sometimes for professionals to do. We see people come into the MIA community as professionals and they end up leaving feeling a little battered. But there are a few people, Brett Deacon being a good example, who have taken advantage of the experience and have altered their worldviews significantly because of their interactions with the groups. And that’s where I think the real answer lies in that people need to just step down from their power position as professionals and say, “Hey, you know what? If we want to help these people, then maybe we should ask them what’s helpful.”

Moore: Yes, who are the experts in the room? It’s the people dealing with the condition or dealing with the treatment. Those who have experienced what harm looks like and what trauma looks like.

McCrea: Sure and maybe ‘normal’ is a little bigger and broader thing than most professionals have been brought up to believe.

Moore: Steve, I can’t thank you enough for spending a bit of time today to talk about the fantastic work you do. Anybody who’s visited the discussion section of Mad in America can see how lively it is. I think you do a great job of marshaling that and it’s a pleasure to see the discussion moving almost in real time.

McCrea: Well, thank you, James. It is always a pleasure to chat with you for whatever reason, and I appreciate you taking the time to listen to what I had to say.

***

Next, we hear from Mad in America’s Family Resources Editor, Miranda Spencer. Miranda joined me to underline why giving parents easy access to alternative information on mental health challenges in kids and youth is so important.

Moore: Miranda, welcome. Thank you for joining me today. Could tell us a little bit first about yourself and maybe how you first became aware of Mad in America?

Miranda Spencer: Yes. So, I had experience in the mental health system as someone who’s struggled with anxiety on and off since I was a teenager and I found a lot of help going to therapy and such. Then, when I was middle-aged, I went through kind of a personal crisis and went back to the mental health system and I discovered it had dramatically changed. The emphasis was on just drugs as the first line of treatment and they were trying to give me diagnoses I’d never had before that were more serious than seemed warranted.

The more I partook of this new mental health system, the worse I became and I just said “What happened?” I started researching and I came upon a website called Furious Seasons that was written by a journalist [Philip Dawdy] who had mental health issues. It was chock-full of articles and research, books, lists, and links about what’s going on in the current mental health system and with the extreme emphasis on medication. That opened my eyes and I started reading it every day.

At a certain point, I found out about Robert Whitaker’s books. I read Anatomy of an Epidemic, and it opened my eyes. Then I guess I found out about the website. I don’t think I knew about it until a couple of years after it was created but once I did, I started reading it. Then someone that I knew from one of my mental health reform listservs mentioned that MIA was looking for someone to do freelance journalism. I wrote to Robert Whitaker and he said, “Yes, you can do that, but we’re looking for someone to be an editor for our new Parent and Family Resources section.” I got the job and here I am now.

Moore: Thank you, Miranda. Let’s move on to talk about the Family Resources section of Mad in America which is such an important part of the site. Can you tell us a little bit about that and the work that you do to keep that running so well?

Spencer: Oh, thank you. I kind of do everything with a lot of help in coordination with others. The Family Resources section [then called Parent Resources] had already been started, I believe, by a critical psychiatry therapist named Eric Maisel, who was very involved in it. The idea was to help get it further off the ground. One of the first things we did was create a couple of online parent support groups for parents whose kids were in the mental health system and not liking what they found.

I helped Kermit Cole and Louisa Putnam, who are the group leaders, get that off the ground, and also two people in Europe who are on our board, Claudia Esteve and Olga Runciman. I now help plan the whole [Family Resources] site and have helped build it up over about four years that I’ve been here. We have blogs, a podcast, Q and A’s for questions that people might have about kids in mental health and psychiatry. A lot of personal stories, videos, and Town Halls.

We also cross-publish relevant science news from the main front page and news that is relevant to parents and families from our Around the Web section. All the time, we’re trying to come up with new things that might help people more. We also just started a newsletter because we’re trying to get more feedback from the people we’re trying to serve. That’s just the tip of the iceberg.

Moore: It’s so important, I think for Mad in America to have that communication with parents and young people, because with the soaring rates of young people being diagnosed and with the rates of prescribing, I imagine that parents out there are in a whirlwind of information when they first come across a diagnosis. Having somewhere like your section of MIA to go to, to try and untangle some of that and to try and get some non-mainstream steer, that’s incredibly important, isn’t it?

Spencer: Yes, people tend to come to us after they’ve gone through the mainstream system and it hasn’t satisfied them and harm has come. So they’re looking for alternatives. Although, what I’m hoping is that it will get to the point where people will maybe come to us first and see what all the options are before they decide what to do.

I’ve two little things to add to that. One is that I think there’s a real hunger for this type of information. I’m particularly concerned about harm because one of the personal stories that we had recently was a tragic story of a couple who lost their daughter based on her being extremely over-treated over several years in a hospital. That story got almost more readership than just about anything we’ve ever published. To me that says that people want to know, and people are very concerned.

The other thing that I’ve got to mention is that we are currently running a teen art exhibit where we’re soliciting contributions. I hope that anyone hearing this that is a teenager or knows a teenager will encourage them to create any kind of art about their experience in the mental health system and who they feel they are and what they have to say.

Moore: I wondered with the work that you’ve done if your thinking about mental health has changed any?

Spencer: I could go on for a long time on this. I mean, I eventually found wonderful practitioners who were very holistic and compassionate and who helped me dig myself out of a very deep emotional hole a number of years ago. So they are out there, but it’s not the norm, I find.

Sadly, the more I learned about the science and the more personal stories I read and so on, I just think we are going in the wrong direction. There is too much emphasis on pathologizing absolutely everything, drugging absolutely everything. The only good thing is that I do see that changing. Even the New York Times just the other day published a series of essays asking if mental illness is as much a social problem as it is an individual problem. I think that people are becoming more aware, but it just makes me more committed to the mission of Mad in America.

Moore: Thank you. Was there anything else that you think we should touch on or anything we should tell listeners to look out for in future?

Spencer: I would say if you haven’t given the site a good look we have a great search function and there’s so much information in there. You can go down a wonderful rabbit hole and learn so much about so many different things. The message is positive, people are resilient and there is hope, you can withdraw from psychiatric drugs if you do it right and you can heal from trauma. It’s just that the way that our current system wants people to do it is one-size-fits-all and that is not what we need. Please come to our site and read and think and talk about it.

Moore: Thank you for all the effort you put into the Family Resources section. I’ve made use of it myself, and it’s good to know that it’s there.

Spencer: Sure.

***

So last but not least, I want to thank you for being with us to listen to the podcast and read our articles this year. Thank you for joining us for these interviews, for your comments and for sharing and getting involved.

 

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Ten Years of Rocking the Boat: Reflecting on Mad in America’s Mission and Work appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/12/ten-years-rocking-boat-mad-america-mission-work/feed/ 5 https://www.madinamerica.com/2022/12/changing-narratives-mad-in-america-mission/ https://www.madinamerica.com/2022/12/changing-narratives-mad-in-america-mission/#comments Wed, 14 Dec 2022 11:01:43 +0000 https://www.madinamerica.com/?p=240412 For our 200th podcast interview, we are joined by members of MIA staff to reflect on Mad in America's mission and work over the last decade.

The post Changing Narratives: Reflecting on Mad in America’s Mission and Work appeared first on Mad In America.

]]> This week is a special one for us at Mad in America, as it’s the 200th episode of our podcast. Our first interview was with attorney and author of Zyprexa Papers, Jim Gottstein, back in July 2017. For this and the next podcast, we’ll be talking to the people that make Mad in America what it is, the people behind the scenes, who keep it running day-to-day.

Later in this podcast, we will hear from staff reporter Amy Biancolli, science news editor Justin Karter and arts editor Karin Jervert, but to kick us off today, we hear from Mad in America founder, Robert Whitaker.

Bob worked as a newspaper reporter for a number of years, covering medicine and science. He is the author of five books, three of which investigate the history of psychiatry and the merits of its treatments. Those books are Mad in America, published in 2002; Anatomy of an Epidemic, from 2010, and he was co-author along with Lisa Cosgrove of Psychiatry Under the Influence, published in 2015.

He was also a director of publications at Harvard Medical School for a time during the 1990s.

Bob joined me to talk about how Mad in America got started and how it strives to achieve its aim of rethinking psychiatry.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Bob, welcome. Thank you so much for joining me for the Mad in America podcast. You and I spoke some time ago, actually just before the podcast got up and running. So, it’s interesting to reflect on that time. 

To get us started, obviously, most people listening will know that you are the publisher of Mad in America and the driving force behind it. Mad in America got started in January 2012 and it looked quite different back then. I wondered what was your aim or objective when you first got the site underway.

Robert Whitaker: What’s interesting is that there was no grand plan or grand vision for what it might become. The initial plan was very simple. I published Anatomy of an Epidemic and that led people to say, this is a scientific story that needs further exploration and we also need to hear from patients, people with lived experiences, what their experiences are.

I heard this from psychiatrists, and I heard it from many people, that we as a society needed to rethink this whole story of psychiatric care. But, really, our initial vision was let’s report on science, and then let’s build a forum for people to write blogs and personal stories, and let’s put up some resources related to the research literature. That was it.

There was no larger vision other than to start to set up a channel for a) knowing the science, b) hearing from people with lived experience and c) hearing from people thinking about what might be different, how to change things, how to build a new system of care. We started initially with a very small number of bloggers.

Very few people were working for us, initially. Kermit Cole was a one-man band in putting out the front page. So Mad in America grew organically and I think the thing that’s important to understand, or see, or recognize, is how it began to fill a niche where there was so much demand. In other words, there was a larger and larger public waiting for this type of information, eager to hear it, eager to share their stories and we just rode that wave over time as we expanded.

We then launched Mad in America Continuing Education; you launched Mad in America Radio for us. How did that start? You interviewed me for your Let’s Talk Withdrawal podcast and the next thing you know, 20 minutes later, we were saying why don’t we do a Mad in America radio podcast?. Which, by the way, is how Mad in America has evolved. As we moved along, we would discover opportunities to expand and do something new.

Our expansion lately into art resulted from Karin Jervert coming on board. She had been involved in the arts and the lived experience community. Mad in America Continuing Education came from when Bob Nikkel became involved. Bob had been the former State Commissioner of Mental Health for Oregon and one of the things we wanted to do was reach professionals with this alternative way of thinking.

I think what’s important is that we stumbled into a niche where there is a great need for information and then talented people stepped forward. One thing that I’m proud of with this organization is that we immediately recognized the potential in individuals who were stepping forward and let them run with whatever their area of expertise was, or interest was.

Moore: Thank you, Bob. It’s been quite incredible in the time that I’ve been involved to see how the site has grown. Here we are, a decade on from the start, the site has grown in size and scope, it has 11 globally-affiliated sites, some five million visitors per year. It not only covers science now, it covers music, art, lived experience and so much more. So, how do you see Mad in America’s role now in terms of the landscape of all things mental health? How does it fit in, do you think?

Whitaker: I think we’ve become quite an impactful voice, to be honest. The growth of the international affiliates has been really important. Now what’s happening is that they are joining together into this international network of affiliates and we’re learning from each other. We’re learning about what different countries are doing and we borrow information from each other. By borrow, I mean republishing articls and that sort of thing, and that is giving us a collective voice on an international stage demanding change.

We are also making it known that we have organized ourselves around a false narrative–that ‘chemical imbalance and drugs are so great’ narrative. I think we are an important vehicle for deconstructing that old narrative and opening ideas to new narratives.

I can talk about the type of impact that we’ve had. When the UN Special Rapporteur for health Dainius Pūras was coming up with his final report, he was relying on Mad in America to inform his reports and he even relied on several of our science writers to help him with those reports.

Same with the World Health Organization, when it published its community mental health report. One of our board members was a consultant to that and several people who’d written for us were consultants as well, which showed they were seeing us, these leading organizations, as an information source, but also a philosophical source, a psychological source for what was possible.

So, I think actually our impact goes far beyond just the visitor numbers, because it spreads the message throughout society, and so much of what we were talking about 10 years ago is now becoming accepted wisdom and accepted knowledge. You see it even in ordinary research circles, people talking about things that we said 10 years ago and now they are accepting it, such as, “Yeah, that’s true, there’s no evidence for long-term benefits with psychiatric drugs.”

I’ll give you a small anecdote about our impact. We were having a science team meeting the other day and one of our science team members, Samantha Lilly, is in Argentina and she was going to interview, I think, the health minister of Argentina. The health minister goes, “Are you “the Samantha Lilly”?” And she goes, “Well, I am Samantha Lilly,” and he goes, “I just read an article you wrote,” which was published on Mad in Mexico. So, how did it get to the health minister? Because we publish it in English. Then Mad in Mexico republished in Spanish and now you have people in South America reading science findings published on Mad in America, at the highest levels.

I was so thrilled to see that chain of information making its way up there and I think that is an anecdote that really explains how our impact is beyond what you just see in the visitor numbers.

Moore: People that regularly visit Mad in America or listen to the podcast will have seen that science reporting is a big part of what Mad in America does. How do you decide what science is relevant to cover for Mad in America’s audience?

Whitaker: There are so many scientific findings that never make it into the mainstream media. Why don’t they make it into the mainstream media? Because the mainstream media has this idea that good science is that conventional narrative. So when they hear things like drugs don’t fix chemical imbalances, they might just dismiss it. Or, even more important, how does the mainstream media get most of its information? It’s fed to them through the PR of the journals, or say the American Psychiatric Institution, and they have PR channels for promoting conventional stories. The research literature is filled with information and findings that actually contradict that conventional narrative and I wanted us to be an outlet, a forum for broadcasting these findings that the mainstream media never really reports on.

Of course, we are also interested in findings about alternative thinking and alternative programs, but the biggest thing is we’re going to be a forum for scientific findings that don’t make their way into the mainstream media.

Now, that’s the mission. But beyond that, I mentioned earlier that people have domains of responsibility. So, Justin Karter is our science editor and he runs that science team. I will feed him some story ideas or study findings and then he communicates with his team and basically, he has built a template for how to report on these findings. What’s the methodology, what are the limitations and what is the context?

One of the things we do that I think is so interesting is that when you read our science reports, they’ll report the finding, and then often they include how this finding fits into other findings. So, it’s not just a singular finding. But that’s our purpose and what we do.

And I want to emphasize again how Mad in America runs through the talents of a number of individuals. It’s not a hierarchical type of organization. Justin Karter is our science editor. He built that team up and he runs it. That’s part of our organizational strength.

Moore: I wondered what you felt was MIA’s biggest achievement over the years and was there anything that you feel frustrated that Mad in America hasn’t been able to accomplish yet?

Whitaker: Those are two good questions. The biggest thing that we’ve been able to accomplish, I think, is to continue doing what we’re doing and expand at the same time, even as we are going against the narrative where all the financial influences are on the other side. The pharma money, the mainstream advertising money, we don’t have any of that. We don’t have any of the usual funds. We are a non-profit, grassroots effort but we’ve been able to continue thanks to the generosity of donors. Nobody corporate is paying for us. It is individuals who are supporting us.

So, I think the proudest accomplishment is a) that we’ve kept it going, b) we’re continually expanding. We are continually grabbing new opportunities, like the growth of our affiliates in the last two years. Mad in America Radio, when you popped up. I think we’ve been really good at, when an opportunity appears, seizing it and doing it fast.

The final thing is the loyalty of the people working for us is incredible. People just stay with us. Obviously, they are not making much money but they are so loyal and they are so capable and they are so devoted to MIA. So for me, as an individual, that has been really rewarding to see the dedication of the individuals here. It’s just astonishing.

Now the biggest failure or disappointment is that we haven’t been able to bring forth the voices of people with lived experience who really aren’t heard at all in society. I am talking about poorer people, foster care kids and poorer people of color. We’ve struggled. There are so many parts of our society that are just hidden from the world. Say, the experiences of ordinary black men in the system. The black men in the system, not only are they likely to get more severe diagnoses but they are also often put under state guardianship and they have to continue to take antipsychotic medications.

Our personal stories, which are so important, do not yet convey the diversity of experiences in the psychiatric system that exist across racial diversities and across class diversities. We’ve tried, and while we haven’t succeeded, we will continue to try. Sometimes these populations we’re trying to reach are so isolated from any sort of mainstream approach that it’s been hard, but we’ve tried to it with video interviews and we’ll keep trying, but that’s the biggest disappointment.

Moore: Would you say that the main challenge for Mad in America going forward is trying to be representative of the diversity of the community that it’s trying to serve?

Whitaker: Yes. Here’s the thing. Part of the fundamental mission is making known that this paradigm of care that we have has done a great deal of harm. You see it in disability numbers, you see it in people trapped on medications, and in people out of work, and people who feel they’ve lost years of their life. You see it in the pathologizing of kids who then go on to careers as mental patients. So that’s shining a light on how this story, and the way it’s been applied to basically expand the financial interest of certain groups, is doing great harm and we need to rethink that.

There’s a missing part of that story. We’re missing the voices of those who are foster care kids and just get shunted into this and then by the time they are 18, they may age out of foster care, but now they’ve got a life ahead of them as a mental patient. They grow up on antipsychotics.

We have poor people in various cities and in various parts of our country, where people just don’t have opportunities. Their lives are so difficult and because their lives are so difficult maybe they get shunted into the psychiatric system. What’s happening to those people in the psychiatric system? How does it affect them and what is it like for them? Whether they be in psychiatric hospitals, group homes, or living on the street. So, we are trying to be an organization that writ large is telling us how is psychiatry affecting human beings in various societies, in the US and other societies.

So much of what we get right now is the story of people of a certain class having been harmed. Sort of an educated class, a literate class who are able to tell their story or even are motivated to tell their stories. But there are whole groups of people cycling in and out of hospitals under state control, in and out of foster care, or in foster care, that are just being pathologized, categorized, drugged and un-listened to, and that’s part of the harm done. If we talk again in five years, I hope we’re doing better on that.

Moore: Is there a message that you’d like to give to Mad in America’s audience?

Whitaker: Here is the message. I think we have had a failed system of care that was given to us by psychiatry as a guild and by the pharmaceutical industry. It was their story that we’ve organized ourselves around. But if you really look at a bigger picture, this is a story about how society cares for and supports its citizens in two ways: those who do develop psychiatric difficulties, how do we respond to them? And also, how do we create a society that is less stressful, that is more nurturing of human beings, children, people as they become young adults?

The message I would give to Mad in America listeners is that you all are part of the solution. You have the obligation to be part of the solution. You need to help us think about how we as a society can change this paradigm. The only way it’s going to change is through a societal discussion and a societal demand about what is possible and how we should organize ourselves and how we should care for others who are struggling in these difficult ways.

I remember while doing my reporting for Mad in America I came upon this phrase, it’s not going to be an exact quotation, but the person said this: “You can judge the ethical quality of a society by how it takes care of those who are the most unfortunate people or the people who are struggling most in their society. How does it care for those people who are the dispossessed, the poor, the struggling?” I don’t think we’re doing a good job of that right now. So that’s the larger ethical story and what I am saying to our listenership and readership is that your voice, your commitment to this and your activity in this is what is going to help us build a different narrative and way forward.

Moore: Bob, to sum up, thank you for being with me today and I have to say that in the years that I’ve been involved with Mad in America, what’s impressed me most is the integrity of the people that work here and I am pretty sure, having spent time talking with you, that all of that flows from your personal integrity and the way that you approach what we all do and where we go. The integrity of how we approach the science I think is really important and that does flow from you.

I think if you want to know where psychiatry or mental health should be in 10 years’ time, read Mad in America, if you want to know where psychiatry was 10 years ago, read something current in the mainstream psychiatric outlets.

So, just thank you for all you do for all of us, Bob. I can honestly say it’s a privilege and an honor to get to work with you.

Whitaker: Thanks, James. Those are very kind words but they are kind words aimed, I think, at all of the people who work at Mad in America, and we are a growing family. It’s meaningful work and if you have meaningful work in life, consider yourself blessed.

***

Moore: Next, we hear from staff reporter Amy Biancolli. Amy is a journalist and she joined me to talk about her work with MIA and the power of ethical journalism.

Amy, welcome. Thank you so much for joining me today for this special little podcast to reflect on Mad in America and the people that make it all run. So firstly, welcome. To kick off I’d like to ask a little bit about you and your history and what it was that brought you to Mad in America.

Biancolli: That’s a big, interesting question and I’ll do my best to give a concise answer. Everybody who is associated with Mad in America has a story and my story is not one of personal lived experience as a psychiatric survivor, but as someone who has suffered suicide loss.

I lost my sister, Lucy, to suicide in ’92. Her ordeal was years long, involving just the worst sort of polypharmacy. She was hospitalized more than a dozen times and she was on literally dozens of medications of different classes, including some drugs that were prescribed to counteract side effects. Unfortunately, a lot of people listening to this podcast will be familiar with the horrors of polypharmacy.

Our father had actually made an attempt when we were kids. I was 11 and she was 14 and he was hospitalized for six months, but it was an era when people weren’t automatically drugged. As was actually, pretty much the norm at the time, after six months of therapy and healing recovery process, he never was suicidal again. So that was my initial experience with psychiatry, which was not a negative one. My dad survived his suicide attempt and never made another.

Then, in 2011, my late husband Chris died by suicide and that was a shorter descent for him. In my sister’s case, it had gone on for years. In Chris’s case, it was a six-month spiral. It started with insomnia and led to a cycle of insomnia, anxiety, depression, insomnia, anxiety, depression. He was hospitalized a few times and nothing worked. It was the same kind of thing and I witnessed first-hand the failures of psychiatry. Treatment just didn’t work and I remember him saying to me at one point, when he was in a brief hospitalization, saying, “How is this therapeutic?”

Through all of this, I was working as a newspaper journalist, mostly covering culture and local arts for the Albany Times Union, which I did in a couple of different stints and in between I had worked as a film critic for the Houston Chronicle, but I was also writing memoirs of surviving suicide.

When I was at the Times Union originally, I got to know Robert Whitaker, Mad in America founder, who was always just a fabulous and very meticulous health and science writer. I knew Bob when he started writing about this and when he came to his epiphany about the failures of psychiatry. Then I heard about the founding of Mad in America and it sort of happened very naturally that he was looking to hire a staff writer/reporter for the webzine and I just thought this is the universe cracking open and saying, “Hey Amy, you know this issue that’s been important to you your entire life in ways you could never have anticipated and ways that you’ve written about personally? Outside of your personal life, this is an opportunity to do some reporting on a really significant topic.” So, I took it and that was in the middle of COVID, the late summer of 2020.

Moore: Amy, I am incredibly sorry to hear of all that you went through. I can’t imagine what’s required to come to terms with a loss of that magnitude in your family. I think you are incredibly brave to go through that experience but then write about it for others to understand and take solace from. So many times we miss chances to perhaps learn from these experiences. I really admire you for writing about that experience.

Biancolli: I love that you used the word “learn,” because I’ve always felt about the privilege and gift of being a journalist, I’ve always framed it in terms of learning. Whatever it might be, whether it’s local arts or film—and I was frequently taken off my beat to cover other things—but I was paid to learn. I’ve always been paid to learn, paid to be curious, paid to listen and that was even true when I worked as a film critic. It’s funny, this is not the public conception of journalism, but you have to humble yourself to say what is the story being told. Whether it’s a movie on screen or whether it’s a person talking to you and then you have to try to understand it from that viewpoint.

I also feel like something horrible happens, it’s always going to be bad, it’s always going to be a horror, a tragedy, but that doesn’t mean that good can’t come in the wake. Usually, small goods, sometimes big goods, and it’s likelier that those little goods will happen if you’re willing to share your story. It’s definitely helped me in a weird way. I mean, it’s intense to have to retell the story, but it’s the power of connection.

Moore: Thank you, Amy. Could you tell us a little bit about the kind of things that you do at Mad in America? Some reflections on the pieces, perhaps, that you’ve worked on in your time with us?

Biancolli: Certainly. Talk about learning, it’s been astonishing to me the conversations I’ve had with people and all that I’ve learned. I’ve been doing deep-dive stories, long features, interviews and a few podcasts, as you know. I’ve started doing book review roundups as well, doing non-podcast interviews and one-on-ones with people. Also, I should just highlight this, stories about alternate approaches, alternate efforts, alternate groups of people, like those in the Pacific Northwest who do organize around rethinking psychiatry, like the Inner Fire Residential Community in Southern Vermont for people either trying to stay off or taper off psych drugs.

I did a three-part deep-dive series on the mental and emotional well-being benefits of music and that was fascinating. Music is important to me, so none of it was surprising to me on a personal level, but that was really fascinating. And I did a big story on the crush on college counselors and the massive influx of students looking for mental health services, and how those people who work for those services, how they’re coping.

One of the most extraordinary pieces I did was a piece that I helped shape in the voice of this extraordinary person, Carlton Brown, who told his story to me when I sat down with him. We sat down for several hours and he told me his story and then with his approval, I used his words and cleaned them up a little and shaped them into his account of living on the streets in New York City. His interactions with police and psychiatry, hospitalizations, his drugs and his recovery and his arrival, finally, at a literal place of peace where he calls home, which is in a supportive housing community up in Troy, New York.

I just feel like I’ve been so privileged to talk to just so many people, telling such extraordinary stories of survival and beyond that, recovery. I mean, what amazing human beings are out there doing this work.

Moore: I absolutely love the richness and diversity of your writing. It’s a side of journalism that I hadn’t properly appreciated before, to amplify the voice of the person that you are talking to and to give them the platform for them to tell their story, but to guide them in a way that they can really give due diligence to the experiences they’ve had and I think you do that wonderfully.

Biancolli: Thank you. As I said, it’s a privilege and I’m always in awe and I hope I never take it for granted when someone trusts me and tells their story. That’s just extraordinary to me. It’s like this random journalist that they’ve never met and maybe we’re talking via Zoom. In Carlton’s case, I sat down with him in person but it’s a relationship of trust and I’m awed, I really am.

Moore: I wondered if your thinking about all things mental health had changed any since your time with Mad in America. I was struck by how you talked earlier about the situation with your father, where he was taken in and was treated, and then he was let go, and that made a big difference for him. Compared with perhaps sadly with your sister, where she was taken in and drugged and stayed unwell, sadly. So, there is quite a shift there just in those different generations, isn’t there? So, I wondered if working at MIA had made you think differently about mental health, or did it just confirm what you already knew from your own experience. 

Biancolli: Kind of both. It gave me a new vocabulary and you know how you can know something and understand something, but then there is a shift in the light and you see it differently or you see it more fully. I often reflect on my sister’s experience with all the drug cocktails she was on and the neuro-psycho-pharmacologist who was always just throwing whatever new drug was out there at her to counteract this, that or the other thing.

I know there was a movement then, but I wasn’t aware of it, it wasn’t as out there. I mean, there wasn’t an internet for one thing and she wasn’t aware of it, I wasn’t aware of it. The idea of wholesale questioning of the pharmaceutical model wasn’t part of the conversation then, but whenever I read or hear an account of someone’s story, like all the personal stories on Mad in America of people going through basically what she went through, or going through the more compacted version of what my husband went through, I think, oh okay. Yeah, so that wasn’t unusual.

I think the awakening for me, not just specifically with this job but with Robert Whitaker’s work and Mad in America, is the realization that it’s just part of a huge and catastrophic norm that this happens so frequently and if anything changed for me, it was just saying, all right, so those horrors that my loved ones experienced, or in my father’s case, didn’t experience, that’s just reflective of what’s wrong with this broad paradigm.

For me, it was always like a personal story of suffering and loss, but now I’m much more aware of the movement and the language. So, for instance, I can’t use the term “mental illness” any longer. Before I started working for Mad in America, I was aware that some people wouldn’t use that term. I never used the term in any sort of dismissive way. I was always describing someone I loved who was “mentally ill” or descended into “mental illness.” I don’t use that term any longer, because I’m realizing just the word illness has got so much baggage and it’s so medicalized and the whole problem with this is the framing of people suffering in terms of the diagnostic model.

So that has changed and just my awareness has changed and my understanding. It’s been gradual over the last decade, but especially working for Mad in America.

Moore: Thank you, Amy. Again, before meeting Bob and working with you and seeing the work that you do, I didn’t realize how valuable a journalistic lens was for this work because much of what you see on the internet has a scientific lens applied to it. It all sounds very convincing and it all sounds very evidence-based, but the job of a journalist is to bring out the person at the center of the science, isn’t it? 

So many times, when you speak to the person you realize the science has been corrupted in the way it’s been applied to that person, but it’s only by looking perhaps through a journalistic lens that we can get to that.

Biancolli: Yeah, that’s interesting. That’s ultimately it, telling the stories of people who are affected, that’s ultimately the goal of all journalism. And I am just so grateful for this opportunity to write about these extraordinary people and these extraordinary efforts and literally telling a different story about mental health and wellbeing. 

I realize mental health itself, there is a lot of conversation around that term, as is the case with any movement, there are conversations about how to have conversations because this is an extraordinary movement that we are in the middle of.

So much has changed just in the time since Bob founded Mad in America and I know that more will change and I realize we’re not at any kind of happy ending just yet, but that to me is just, I don’t think thrilling is too strong a word. It’s really invigorating, intellectually, morally, emotionally, journalistically to be covering and in a way being part of that movement. I’m not, as I said, in a sense that I am not a psychiatric survivor myself, but it’s profound.

Moore: Amy, thank you. I consider Mad in America very fortunate to have you working with us and there is such richness, depth and diversity in the stories that you bring to Mad in America. I love the fact that music is so important to you and it comes out in your writing.

I think music, art and poetry actually figure a great deal in an awful lot of people’s recoveries, far more than it’s given credit for, actually. So, I love that you bring music and art into your writing too. I am so grateful you could join me today to talk all about it. Thank you.

Biancolli: Thank you so much, James.

***

Moore: Next, we’re joined by MIA’s Science News Editor, Justin Karter. Justin heads up our science news team, in addition to being a staff psychologist at Boston College University. Justin tells of how Mad in America’s science team became established and explains some of the guiding principles involved in discovering and reporting on science content that often gets ignored in mainstream journals.

Justin, thank you so much for joining me today for this podcast where we’re actually turning the focus on ourselves a little bit to what Mad in America does. You have been such a key and important part of all Mad in America has achieved for quite a while now and I’m just interested to get your thoughts on how Mad in America does its thing, but before we get there, I wanted to ask about you and how it was that you first got involved with Mad in America. What brought you to it in the first place?

Justin Karter: I am really excited to have the opportunity to step back and reflect on the work that we’re doing and where we started and where we’re headed.

So, it was back in 2015 that I initially began working for Mad in America as the news team writer and I was introduced to Robert Whitaker by Lisa Cosgrove who I had met through the American Psychological Association, Humanistic Psychology Society. At that time I had a previous degree in journalism and I had just finished my Masters in Community Psychology. I was looking for a way to prepare myself for a doctoral program and also to work on an activist approach to mental health.

I was really excited to get to meet Bob. In my Masters program at Point Park University, we’d actually read Mad in America and Anatomy of an Epidemic in different classes and the professors there were really adamant about changing the paradigm around mental health. So, Bob’s work was a centerpiece of that and then to be introduced to him was really exciting and then for him to ask me to come and join the team and contribute in some way, I was thrilled.

I remember leaving his office in Cambridge and calling some of my professors and saying, “you’ll never guess, I just met Bob Whitaker and I am going to be working with Mad in America”. So, it was really exciting from the go and my initial role here was to summarize research that was coming out that very broadly didn’t quite fit a narrow biomedical model for mental health. So, it wasn’t just the “new drug discovered for this,” or “a new gene discovered that might contribute to schizophrenia,” the kind of stuff that was being reported most frequently and usually straight out of a press release and into the newspaper in a lot of the mainstream outlets.

What I started doing was just combing the literature for things that I found interesting that didn’t quite fit that model, things that had to do with social determinants of mental health or adverse effects or drug efficacy issues or conflicts of interest in medicine and writing brief summaries of them for the website, one a day for the weekdays for that first year.

That was really an education. It prepared me quite a bit for my future studies and it was pretty fun to do too.

Moore: In recent years, Mad in America has really expanded its science coverage, not just in terms of the amount of material it produces but also, perhaps, broadened and expanded the conversation into many other areas other than just psychiatric drugs or diagnoses and the DSM. You now have a science team that you look after and coordinate. Can you tell us a little bit about how the science team came together and how it works to produce all this content for Mad in America?

Karter: So the expansion of the science team in terms of what we cover and the research that we look at is really a credit to the team that we’ve put together and the diverse interests and life experiences that everyone brings to the team and what they choose to report on and how they choose to report on it. I feel really lucky to have pulled together friends really, people that I’ve met through doctoral studies, through different conferences, through connections doing scholarship together and people who have approached me via email and said, “I am interested in what’s going on in Mad in America,” or “Hey, I read something on your website for a study that I was doing. I’d like to get involved.”

It started initially with a core group of us from UMass Boston who were all students of Dr Lisa Cosgrove. We were all coming from the same perspective. Then over time, we added a lot of really great young scholars who are now, many of them, are graduated and professors or researchers, or clinicians in their own right and some are still students and who are just producing really high-quality work for us, and bringing different vantage points of perspective to the team.

Everyone gets to select their own research article that they choose to cover. I suggest a number of them every week to the team and people can pick from those, or they can follow their own interests if they find something different. Often, people are doing their own research for their dissertations or for different studies that they are a part of and they use it as an opportunity to do their literature review in a thorough way.

So, over time, these students start to build up their own cache of research that they summarized and covered and really thoroughly explored, which they then can also use for their studies and we publish those summaries separately. The research that people are interested in and that they are doing themselves shapes what we cover on the website quite a bit.

Moore: That’s really important, isn’t it, because you’ve mentioned before that Mad in America, even for yourself in your own work sometimes, has been a valuable reference tool. I guess what’s important is the kind of research that’s often covered in Mad in America is not research which might figure all the time in the big, high-impact journals.

So, Mad in America in a way offers a way to magnify that research and perhaps get behind the paywalls and expose people to wider thinking than you might get if you just followed, say, the BMJ or similar journals.

Karter: Absolutely. In terms of using Mad in America as a research library, I think that’s one of the ways in which Mad in America continues to expand and maybe is currently being underutilized by researchers. Now that we’ve had the research team running for six years and we’ve summarized five articles a week, so we’ve got over 1,000 articles that have been summarized by our research team members. You can search through those on the website and read a summary and then we link directly to the study and provide citations at the end of each research news article.

So you can grab the citation, you can go to the study and read more thoroughly, decide if it’s something that’s helpful for you and your literature review or the paper that you’re writing, and you can really put together a pretty solid start to a literature review or an outline to a literature review by searching through the reviews that we’ve done and summarized on the website.

Moore: You talked about your first meeting Bob and then summarizing articles yourself and then developing into a science news team that broadened everything in terms of their view of the world and their preferences. I wondered what was the impact on you, and particularly, has the way that you thought about the mental health landscape changed in the time that you first joined Mad in America and then through your subsequent experiences with the science team?

Karter: I touched on this a little bit in the interview I did recently. The two major effects that come to mind right away are; one, just being humbled by the complexity of these issues. So, broadly, the complexity of human consciousness and the mystery at the heart of that, the complexity of the brain, its interaction with our environments and the way that we shape and are shaped by each other. Reading research that’s all taking narrow chunks of that mystery and trying to elucidate it and explore it. Seeing the arguments, the points of conjunction and disjunction, it’s a reminder of the mystery of our existence and the complexity of human experience. That’s a humbling feeling.

The second piece is being exposed to all of the in-fighting, turf wars and different ideological perspectives on mental health that arise in the psy disciplines generally. Within psychiatry, between psychiatry and psychology, between psychology and social work and within each of those fields. The different critical and ideological perspectives that tend to butt heads with one another.

Seeing all of those fights and seeing all of those arguments and seeing all of the different ideological perspectives is helpful in reminding me of how little each conceive from our own perspective. It’s also helpful and it shows you where the points of disjunction are, where the fault lines are and those are the areas that are exciting. Those are the edge of the frontier where we don’t quite have an agreement yet. We don’t quite have a language for how things work and it points us to the most critical issues to explore in the field.

So whether that’s diagnosis and what it means to have a disorder, which brings up all of these huge issues; or whether it has to do with human rights in mental health, how do we think about the rights of people who are diagnosed and some people see them as a threat to themselves or others, how do we balance that threat to ourselves and others with basic human autonomy and dignity and agency. I think these are examples of places where we have wide disagreement in the field and there are a lot of competing perspectives and it points us to what’s most important and the issues that need to be worked on, talked about and thought about with a great deal of nuance.

Moore: If we look to the future and where Mad in America is going, then what would you like to see the science team focus on going forward in terms of its reporting for Mad in America? Is there one particular issue that you think is so important that it needs much more attention, or is it that all of the issues need attention and it’s just a question of trying to cover as much as you can?

Karter: I think that we’re starting to see the pendulum swing a bit and we’re starting to see the paradigm change. Mad in America’s influence, although not always recognized, is clear. Other news outlets are covering mental health issues with a great deal more nuance. They are often interviewing or citing the people that we’ve already interviewed and cited for years.

So I think the conversation is shifting and so where do we go from here? We’ve got a little bit of momentum. People are open to seeing mental health as a more complex issue, particularly with regard to social justice, political issues and social determinants of mental health. How do we push the conversation forward? It feels like the leading edge of that conversation is around the inclusion and participation of people with lived experience. Mental health issues or lived experience of psychiatric confinement, or lived experience of psychosis, there are different ways of defining that.

I think as a news team, one of the things that we’re wanting to push forward is increasing lived experience perspectives on our news team, but also covering research coming out of the mad studies field, coming out of critical disability studies, coming out of psychological humanities and first-person memoirs of madness or experiences of distress. I think increasingly, we want to push forward in that domain, towards greater inclusion of those bodies of literature that are consumer or survivor and ex-patient literature, or psychosocial disability literature. We also want to have more inclusive practices on our team as well.

Moore: Thank you, Justin. Just before we come to the end I wondered whether there is any message that you’d like to give to people trying to see and understand where the science is going on these particular issues.

Karter: I would say a couple of things to keep in mind, is that every individual research article is a small piece of the puzzle that’s pointing us in a different direction, that’s broadening our picture, that’s broadening our conceptualization, but that none of them provides a totalizing account of any experience of madness or mental distress, or mental ill-health. Just my struggle there, trying to find the words for that points to probably the second thing I would invite people to keep in mind, is that as we’re writing these, the language is evolving and we’re on our way to finding better language and better ways of thinking about some of these issues, but the language itself is a limiting factor.

Moore: Justin, I just want to thank you and the science team. The team under your leadership and guidance does a stellar job and applies real legitimacy and rigor to the story and the narrative that we hear so often and that the science team bring those other narratives to the fore, allowing people to really understand and appreciate things that might be quite difficult to find otherwise.

So, I thank you so much for the work that you and the science team do.

Karter: Thank you so much, James. The last thing I would add here is that I know for myself and for many members of the news team when we talk about the work for Mad in America, we see this as an opportunity to promote the kind of work that we’re doing and the way that we’re thinking about mental health issues, but we also see it as a service to the field.

We know that we can publish dense, theoretical treaties in niche journals and have them read if we’re lucky, by our parents, our partners and one other person and a lot of working hours and intellectual labor go into doing that and it’s worthwhile to do that for its own reasons. We also know that Mad in America provides an outlet for reaching a broader public for providing some service to the field in trying to change the field for the better from within.

So, we’re really excited to have the opportunity. I know I am and I’m speaking for others, to be able to do this bit of activist work to provide this bit of service to the field and to service users and to our readers and I just want to express gratitude for the opportunity to be able to contribute in that way.

***

Moore: And finally, for this first part of our 200th podcast, we’re joined by Mad in America’s Arts Editor, Karin Jervert. Karin is a fine artist, writer and psychiatric survivor. She joined me to talk about her work and the vital role that art can play as a means for people to tell their stories.

Karin, welcome. Thank you so much for joining me today to talk a little bit about Mad in America this time. To get us underway, I was really curious actually to ask a little bit about you and some of your experiences and how it was that you came to know about or to find Mad in America in the first place.

Karin Jervert: Yes, thank you so much. I am so happy to talk with you and to catch up on this and congratulations on the 200th podcast.

I was labeled bipolar at 21 and hospitalized several times over almost 20 years by the time I ran into Mad in America. A year or two before the pandemic, I was really starting to see how the actual treatment that I was receiving for this label I received could have been the problem. I was like, wait a minute, I am not sure that this is helping me in the way that they are saying it’s helping me.

It was a slow burn really, but at some point, I actually just Googled trauma from “mental hospitalizations” and I ran into the Icarus Project, which is now the Fireweed Collective. Basically, I just started learning a new language. It was an information dump. I just got all this lived experience of harm through psychiatric medications, harm through gaslighting in therapy and harm through mental hospitalization trauma.

It was all these things that I had never been exposed to prior. But, there was always this needling bit of me that was like something is wrong. I could never quite accept the diagnosis. I could never say, “no, this fits perfectly, this is who I am, this is what I need to do.” There was also gaslighting around that, where it was like, “If you can’t really accept that, then there is something going on with you that’s not right.”

It’s funny because, in the end, the healing that had to happen, was that I had to not accept it and trust that core intuition that something was not right about it. So, long story short, I wrote an essay and after all of this learning, all of this working through what I had learned through the Fireweed Collective, I wrote Can We Allow Suffering. That was the first thing that I ever submitted to Mad in America, but around this time, the pandemic had begun and I had been trying to find work. I had worked at a bookstore but I had gotten laid off during the pandemic and going to work at Mad in America was the next step.

I want to be involved. I want to help bring this information to others because I really felt it saved my life. The information on Mad in America, the lived experience narratives on Fireweed, the connections there. All of this, I felt saved my literal life because I started withdrawing and as soon as I got off the Latuda, which I was on an extremely high-dose, the suicidality that I had struggled with for five years just disappeared. Suddenly, I wanted to live and it was like, what? 

How is it okay that these medications have suicidal side effects? That honestly, James, for me, that’s insanity. If someone comes to you with depression and feeling just completely despondent about life and you give them something that could possibly turn them towards suicidality. That’s insanity and I will say, when I use the word insanity now, I only use it in the context of the well-funded kind. I don’t use it in any other context. I would never call myself insane and I would never call any of my peers insane, but the well-funded kind is the kind of insanity I talk about. So that to me feels like insanity.

I sent out an email to Bob and I was like I really want to help with this. I guess because I had a background in social media and I had a background in arts and all this stuff, it was a moment that was perfectly timed—the introduction of hey, here I am.

Moore: Thank you, Karin. Could you then tell us a little bit about the kind of things that you do for Mad in America?

Jervert: More and more, as I’ve settled into the Arts Editor position, I have realized that really all I am doing at Mad in America is creating opportunities for people with lived experience to share their stories and to facilitate the feeling of worth and the validity that I feel for a lot of psychiatric survivors. The validity and worth of our personal lives or personal experiences have been stolen from us and I’ve experienced that personally.

So, I think that’s the core of my work at Mad in America. Although I’ve done other things, such as the Suicide Hotline Project and things like that, but more and more—because I’m an artist, through and through, that’s the core of my work. I was born this way. I’ve realized more and more that my goal at Mad in America is to present as many opportunities as I can for people to tell their stories and feel safe doing that and receive feedback that their life matters and their story matters.

So, the work I do is I manage the gallery, which is always an open call. Anybody can submit at any time to that and then there are several other projects like online exhibitions that are separate from that that we do periodically. So they’ll have themes like we have one running right now around Beyond Labels and Meds: What It Feels Like to Be Me, which is the teen focus for teen artists.

So, expanding a little bit more the arts content that we do around that stuff, it’s a goal.

Moore: Karin, what you add to the site, what you bring to the site is so important and so needed, because we know that Mad in America has been a place for survivors to voice, their experiences and what they’ve been through, and that kind of thing, but not everybody wants to write. Some people really do want to express themselves through music or through art, or whatever it might be. So, it’s pretty incredible to see the artworks that people send to the site and through you, they get to express themselves in an artistic way. That’s so important, isn’t it?

Jervert: Yes, absolutely. In the end, I think a part of that becomes an access issue. Some people can do some things, some people can do other things and if one person can’t necessarily write but can draw, there is a level of accessibility that opens up for that person. So, making sure that there is just this open opportunity and an open invitation for all kinds of artwork is important, I think.

Moore: So, for anybody listening that did want to know more, how can they actually submit art to us? How would they go about doing that?

Jervert: If you’re on the Mad in America site, under the Editorial menu you’ll see The Arts tab. There are links there on the top of the Arts Corner page, you’ll see Submit Here.

Basically, just give us the title. You can write a little bit about it if you want to tell us a little bit about the theme of the artwork or anything like that. If it’s poetry, humor, we do memes now too. So you can submit memes and artwork.

We’re trying to figure out a better way to do music, original music, as well. So, we’re working through that, but you can submit sound files as well. So, performed poetry or even original music. We’re figuring out better ways to present that.

Moore: I am so grateful for everything you do for Mad in America, but I am so sorry that you had to go through the experiences you did in order to find Mad in America. 

That’s difficult to contend with, isn’t it, that people are having to endure such horrible things to then find a tribe and a community that they can express through many different ways, but I’m also glad that Mad in America exists to allow people to express those things.

Jervert: I think that in the end, what is so essential about Mad in America and why I love being here and I love working with all of the people here is that we all share that vision. We have been so silenced and Mad in America provides a way to speak, a way to share, and it’s so, so important.

Moore: I must also say Karin that I think you’re being too modest. You’re not just the arts editor, you do a load more of work for Mad in America, really important behind-the-scenes stuff and work with our global affiliate partners and anybody that knows anything about these kinds of sites knows that behind the content, there is a whizzing machine of stuff that needs bolts tightening and leaks fixing every now and again. We depend on that and it’s a really important part of having the content front and center, isn’t it?

Jervert: Oh, yeah. I think that was one of the great things about when I came to Bob and said, hey, here I am. I had web design experience, web management experience, the social media experience. So, I was happy to use those skills towards Mad in America’s mission and the affiliates are just a wonderful group to be working with. I enjoy that quite a lot, being able to work with people around the world with similar visions and help them get started by helping them launch their sites. As you said, we’re like a little tribe and we meet every month and talk and go over things. It’s like all the things I do for Mad in America, I am super-honored to do, but I always start, I guess, with the arts editing because the arts are the love of my life.

Moore: Before we say goodbye, Karin, was there anything else important for people out there to know about Mad in America or know about you, or know about the work that you do for Mad in America?

Jervert: One thing I was thinking about was when we run into media outlets in the world right now, it seems more and more that the neutral is becoming not offending sponsors or not offending mainstream culture, that’s become what we call unbiased—that we’re not offending mainstream.

I think Mad in America is important because it doesn’t fall into that groove. It says, we’re standing outside of that and we’re going to operate with the knowledge that it’s important to highlight content that is up against the mainstream and you just don’t find that as much. I think Mad in America does an amazing job with that and bringing information to the fore that like me can save people’s lives and has saved many, many people’s lives.

I think the last thing I’ll say about Mad in America is I’m so grateful for what Mad in America is because I get emails all the time saying, “Mad in America saved my life,” and I feel similarly.

Moore: Absolutely, me too. Karin, thank you so much for spending a bit of time with me today to talk about how important this all is and what you do, and equally, I think that we’re tremendously lucky to have you on board with us. So, thank you for all you do.

 

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

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]]> https://www.madinamerica.com/2022/12/changing-narratives-mad-in-america-mission/feed/ 51 https://www.madinamerica.com/2022/11/david-healy-polluting-our-internal-environments-perils-polypharmacy/ https://www.madinamerica.com/2022/11/david-healy-polluting-our-internal-environments-perils-polypharmacy/#comments Wed, 16 Nov 2022 11:01:30 +0000 https://www.madinamerica.com/?p=239641 On the MIA Podcast, Dr David Healy discusses World Tapering Day, antidepressant treatment and sensory neuropathy and the difficulties that can be encountered when trying to deprescribe.

The post David Healy – Polluting Our Internal Environments: The Perils of Polypharmacy appeared first on Mad In America.

]]> Joining us today for the Mad in America podcast is renowned psychopharmacologist Dr David Healy.

David is a psychiatrist, scientist and author. Before becoming a professor of psychiatry in Wales, and more recently in the Department of Family Medicine at McMaster University in Canada, he studied medicine in Dublin and at Cambridge University.

He is a former Secretary of the British Association for Psychopharmacology and has authored more than 220 peer-reviewed articles and 25 books, including The Antidepressant Era and The Creation of Psychopharmacology and Pharmageddon.

He has been involved as an expert witness in homicide and suicide trials involving psychotropic drugs, and in bringing problems with these drugs to the attention of American and European regulators, as well as raising awareness of how pharmaceutical companies sell drugs by marketing diseases and co-opting academic opinion-leaders, ghost-writing their articles.

David is a founder and CEO of Data Based Medicine Limited, which operates through its website RxISK.org, dedicated to making medicines safer through online direct patient reporting of drug side effects.

In this interview, we discuss the recently held World Tapering Day, a possible relationship between antidepressant treatment and sensory neuropathy and the difficulties that can be encountered when trying to deprescribe.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: David, welcome. Thank you so much for taking the time to join me again for the Mad in America podcast. It’s good to catch up and explore where your thinking is at with various issues.

David Healy: It’s good to be here and our conversations have always been great. The issues are probably pertinent to some of the stuff that I was looking at recently linked to World Tapering Day. So yes, lots to pick up on.

Moore: As you say, World Tapering Day was held over the 4th, 5th and 6th of November and it was led by people from the Netherlands who, themselves, have experiences with opioid and antidepressant withdrawal and experience supporting people trying to come off the drugs. I just wondered what your reflection was on World Tapering Day and whether it’s a good thing to get people together around a banner such as this.

Healy: I think it was a great thing from a few different points of view. First of all, I think putting the idea of tapering on the map and having tapering strips gives both patients who may want to get off the drugs and doctors who are faced with the question from patients, “how do I get off these drugs?” the idea that there is a way to do it, which makes it easier for people to recognize the problem.

I think a lot of the problems in both mental health and general healthcare become problems because someone comes to the doctor who has no answers and because they’ve got no answers they don’t want to even hear or see the problem. That adds to the problem, the fact that I’m not being seen, I’m not being listened to and not believed. Even if the doctor hasn’t an answer, it’s great to be believed.

Now, if the doctor and the patient have an idea that tapering strips are a way to move this forward, that’s going to encourage them both to take the chance. A lot of people have problems tapering and I’m sure that the strips help, though some people have very severe problems which may not be just as simple as using a strip.

Looking at the World Tapering Day presentations and the videos that are there now, Peter Groot who is the person who got tapering strips off the ground is very impressive. Not in the way of an expert standing up there and saying, “This is the way, the truth and the light,” much more a case of he’s just painfully honest and decent. He kind of talks about the issues and somehow has a way of getting things that need to be on the radar.

Right at the end of his talk, he said things that are all too true, which is that the pharmaceutical companies brought these drugs on the market and they are all one-size-fits-all and they didn’t have doses that we could step down to and make it easy to get off. He didn’t quite use the word evil but he went very close to it, saying that this is a complete scandal. It means that rich people are fine, they can go to compounding pharmacists and pay double or triple the usual costs or they can buy liquids that are much higher costs to help them get off. Most people who are hooked on antidepressants don’t have these options. If the family doctors refuse to actually prescribe a liquid because it’s going to cost them more, or if they go to a compounding pharmacy and hear, “Yes, we can make that up for you but it’s going to cost a lot more,” it really gets people in a bind.

This is an awful problem which affects millions of people and messes up the lives of hundreds of thousands of people. There is no support for the people that are caught in this bind. Peter, as I say, gave a terribly simple talk but fairly profound and he is quite a remarkable man, I think.

Moore: In my dealings with Peter, I’ve always been impressed by what motivated him to do this, the simple motivation of identifying a problem that he could see a practical solution to and trying to help people. So there was never any talk about money or recognition. It really was simply about trying to fix a problem that he saw that affected him and affected others.

While I don’t suggest the strips are the right tool for everybody, they are another tool in the box and the more tools in the box there are, the more proof there is that this is a pressing problem that needs answers. It does give doctors a way to respond to this problem, as you said, if people are believed. That’s a big issue in itself, isn’t it?

There are a number of things, withdrawal, perhaps chronic fatigue or even long-COVID now where as soon as the doctor hears certain phrases, they stop believing that person. That’s quite a challenge to stand up to your doctor to say, “I know more than this about you. I’ve been living with this.”

I wondered what your experience was of that. Is there anything that could be done to get your doctor on board?

Healy: Yes and I’ve been thinking about this a lot, but just to hop back quickly before we go on to getting the doctor on board. One of the other things tapering strips do is even if they are not right for all people, even if—as I think—there’s this group of people who have a sensory neuropathy caused by the drugs and while tapering helps with that, it’s not the complete answer. There are going to be some people that we’re going to have to try and find some way to make the little nerve endings that actually seem to be damaged regrow.
To this day doctors, probably even most of them tell people who want to get off drugs, first of all, there is this group of doctors that say, “You can’t. You have to remain on these for the rest of your life.” That’s a huge group but there is also a group that say to the person, whether that’s an SSRI or a benzodiazepine or whatever, “It’s easy enough, just switch from taking one pill a day to one every two days and then after a few weeks, change one every three days.” This is disastrous. This is very bad advice.

One of the things tapering strips can do, which is good for all people, is to stop doctors saying crazy things like this. I mean, it might sound reasonable to them but we know that it’s just not right and it is actually making things worse.

I have a sense even that people often can’t talk about these things, because the doctor—even though they think he or she is a nice person—may turn nasty and may play the expert card. “I am the expert. When you’ve got 10 years of training in medicine, then we can have a conversation,” or something like that. For me, I’ve learned more from the people who brought problems to me than any of my medical colleagues. Like a lady who taught me that SSRIs can cause you to become alcoholic and told me more about the serotonin system than I knew.

People who have post-SSRI sexual dysfunction (PSSD) are the ones who come up with all of the research ideas, it’s not me, but equally, there is a further thing that people can do for themselves in groups.

I had a patient who actually looks a little bit like you, about the same height, the same build and the same charming manner, who had bad OCD. This was four or five years ago. A nice man who is an electrician and he had OCD. He had to go fix heating. You have to undo a bunch of wires and then put them back in the right place, which is a nightmare if your OCD is acting up. So they take pictures the whole time of how it was before we changed them and then a picture of how things are now after we changed them. If you go home and you’re not sure you did it right, you can look at the picture and try to reassure yourself. Any time I’ve had people come into the house to fix the heating since and I see them take out a phone you can ask them if they have OCD and they’ll often say, “Yes, I do.”

Anyway, this man says his OCD had acted up and he’d been on SSRIs before and we put him on an SSRI and tried clomipramine which is a bit stronger. Through the whole thing, this is just a nice man who is clearly suffering and OCD can cause terrible suffering and my urgency was I had to help him. I was doing everything I could but things didn’t seem to be working out.

One day, he comes back to the clinic and he knows that I like him and I think he should feel free to say anything to me, but he doesn’t. He has to sound things out and decides yes, I’ll try that, I’ll tell Healy what I’ve done. He says, “Look, the OCD got worse when I stopped smoking and I’ve gone back on smoking. What do you know, it’s a lot better.” I am there thinking this is very interesting. He says, “Look, I’ve Googled this and actually, there are clinical trials of smoking and nicotine patches and the drug for Alzheimer’s called Donepezil, which acts a little bit the same way for OCD and there is evidence for these things have on OCD.” So, there is a lot of research that people out there who could be electricians or whatever do and they come up with the right answers.

I actually called British-American Tobacco on the phone and said look, I’m a doctor in a mental health center and I’m treating patients. I’ll be doing some research on smoking and patches and things like that and it looks like smoking can be good for OCD. Do you know anything about this and is there anything you can tell me about this? There was silence at the other end of the phone. They are not used to people telling them that maybe there is a good use for smoking. So they haven’t ever gotten back. They don’t want to go near it.

The other thing is that most people think SSRIs are good safe drugs. They are prescribed by doctors. Doctors wouldn’t tell you to smoke, but nicotine and alcohol are available over the counter and SSRIs are on prescription because we think they are more dangerous than nicotine or alcohol. The other thing, which needs to come into the frame a little bit is most people figure if you smoke consistently for the next 20-30 years, it’s going to shorten your life. If you drink every day for the next 20-30 years, it’s going to shorten your life. I am sure if you take SSRIs and antipsychotics and combine them every day for the next 10 or 20 years, it’s going to shorten your life and cause you to age visibly. It’s one of the things people need to take into account and doctors need to take into account when they put people on these drugs, not just putting them on but we need to be thinking from the start when and how to get them off, which is not happening.

Moore: That is a fascinating story and it reminds me of the ingenuity of the people to try and find any way through their difficulties. Quite often, people are successful in making changes which are far outside the thing they are dealing with but actually have some beneficial ancillary effect.

I’m sure you’ve seen it yourself, if you go on forums for SSRI or antipsychotic withdrawal, there are perennial conversations about up-dosing to try and dampen down symptoms or to go back on to a tiny bit of what you were on in the hope that it might help. Some people do that and they are helped but there is tremendous shame and stigma associated with people saying, “I feel that I haven’t completed my journey. I feel shameful that I’ve had to go back on,” but if it’s an answer for people, it’s an answer. Isn’t it?

Healy: Yes. Peter Groot raised this, which is that tapering strips work, wonderful, but there are some people who aren’t quite right when they get off and it does seem to be the case for some people that if they just go back on the one-milligram dose it can help. Now there are a few curiosities about this.

One of the things to bear in mind is that quite apart from the fact that we don’t have liquid formulations, which is criminal, when the companies brought the SSRIs on the market they were scared they wouldn’t be able to show that they worked. To get through FDA they really figured they needed to give people an awfully high dose. When you take an SSRI, it’s like driving a sports car through a city center. You are in something that is not built for the environment that you’re in. It can go from zero to 100 in two or three seconds, but you are not going to do that in the city center.

From that point of view, Prozac in a five-milligram dose or even a one-milligram dose is close to as effective in clinical trials as the 20-milligram doses, but they figured let’s make things simple for doctors. They weren’t treating doctors like experts, they were just treating doctors like teenage consumers who need it to be kept simple. This is why they brought the one-size-fits-all dose on, which was much too high.

The older antidepressants came in a 100-milligram dose, a 50-milligram dose, a 25-milligram dose, a 10-milligram dose and a liquid, but that all went out the window. So it’s probably the case that going back on a very, very low dose, we don’t quite know how low, can be effective and there are good grounds to think that it will be beneficial. It’s not that you’re on a terribly low dose, you’re on what in many respects is a reasonable dose. The other dose was unreasonable.

Linked into that there is another possibility, which is that for a group of people, life is just not quite right and they need to go back on a low dose. I’m not sure it’s working as an antidepressant at that point. One of my hunches is it’s working to manage sensory neuropathy.

In all of us, we’ve got the big nerves that move a body around the place and things like that. We’ve also got a bunch of little nerves which are in our skin and guts and these have what are called small fiber nerves and they are unprotected. The big nerves have a big sheath around them and if that goes wrong you can have awful problems, but the little nerves don’t have anything. They are exposed and one of the things we know is that a lot of the psychotropic drugs we use, particularly for pain, like the antidepressants and the anticonvulsants actually help ease the pain by killing nerve endings. I think that gives rise to the thing I’m interested in, which is post-SSRI sexual dysfunction, where the genitals go numb because the nerve endings in them have got fried. It’s not a brain problem, it’s a peripheral problem.

This is what I think gives rise to things like brain fog that people complain about. It’s not just the sensory input from the genital area but it’s from around the body, from your gut and so on. Your brain is much more attuned to your gut and bladder and genitals than it is to things happening outside you. So when there is no input, this gives rise to the depersonalization, de-realization, brain fog and things like that. When you’ve got that kind of thing happening, I think what we’ve got is not just a withdrawal problem but it’s revealed a sensory neuropathy problem, which is there in some people but not all.

I have a colleague who is a doctor who reported recently that he was on SSRIs for a few years, he didn’t know he could get hooked to them and he had an awful time trying to withdraw but he was determined. He tapered off them and said, “I am feeling better. There are things I can do now that I couldn’t do on the pills and I was keen to be able to do, but I am not that good. They caused me some harm, some damage,” and then he got in touch with me one day, about four years later and said, “Hey, all of a sudden, just a few weeks ago, everything changed in a very short period of time and I came back to normal. It was as though the lights went on. I was feeling back to me.” Now that’s consistent with nerve-endings regrowing and plugging themselves in and the brain getting a lot more stimulation.

So that’s a little bit of what interests me, but there is another angle and this comes back slightly to the nicotine story and smoking. One of the big myths we have is that you want to avoid too many drugs that have an anticholinergic effect. This idea goes back to the mid-1960s when a thing called the catecholamine hypothesis of depression turned up. We said that in people who are depressed, they’ve got lowered noradrenaline levels or lower norepinephrine, as they say, over in the States. Nobody even mentioned anything about serotonin but the idea was if you’ve got a drug that was a pure norepinephrine reuptake inhibitor and doesn’t do anything else, it’ll work very well and will be free of side effects. Most of these drugs have an anticholinergic effect also and that causes you to be unable to pass water. It causes you to be constipated. It gives you a dry mouth and blurred vision.

Everybody swallowed that, but it’s not true. A lot of patients called into the hospitals say they will be happy enough if you stopped their antipsychotic drug or lowered the dose, but don’t touch my anticholinergic. That’s the one that’s helping me. Now, it’s helping in two or three ways. One is it’s a feel-good pill. You don’t get hooked to it, as far as I know, but you do feel good on them and people in the past used to brew up herbs that were anticholinergic in order to feel good and euphoric. But here is the thing, 10 years ago there were reports that anticholinergic drugs in a low dose can cause small nerve fiber endings to regrow.

We’ve been told to get people off anticholinergic drugs or reduce their anticholinergic burden but in fact, that may do much harm. There is an increasing amount of evidence that it may be possible not just to let these little nerve fibers regrow, which could take months or years, but to actually promote the regrowth so maybe we could get the job done much quicker.

Moore: I have to say, there are a couple of fascinating posts on Rxisk.org about this and the response from readers and their comments back are also interesting. You talked earlier about skin biopsies to see if this kind of damage can be checked for. Should we be going en masse to neurologists to ask for help with withdrawal or sexual dysfunction problems rather than going to a GP who seems largely clueless?

Healy: GPs are awfully good, all things being equal you’ve got a better chance with a GP than you have at a specialist, either mental health, neurology or whatever. They’ve got very boxed in and if the problem you’re having is not totally and directly in their area, they disown it. Whereas a family doctor is more likely to have a slightly broader view and if, as you say, we can turn them around and get them interested to listen and maybe not figure they have to have all the answers themselves but maybe make them more aware that the patient bringing in the problem to them may also have an idea what the answer might be.

If you go in to get off your antidepressants, while I don’t think tapering is the whole answer, a much safer bet is to become an expert on tapering strips. Go and see the World Tapering Day videos and then bring the answer to your doctor who will be there saying, “I don’t know how to do it. I don’t know how to cross you over from this drug to that drug or at what rate to bring you down.” If you can do the work for him or for her, it’s more likely to work out.

As people who go to Rxisk blogs will see, it’s been people with PSSD and I’m sure this is true for withdrawal as well, a lot of them seem to have antibodies to the cholinergic receptors that seem to be linked into all this. Again, this has been driven by the people who have the problem and who’ve got skin in the game. The average doctor hasn’t got skin in the game. So the trick is how to get him to think it was his idea but you were the one who was feeding it to him.

Moore: You also mentioned in that blog and I can’t remember the exact wording but you talk about tapering revealing a problem rather than causing it. So, again, many people in forums will say, “I didn’t start to suffer until I tapered. So that must mean I tapered the wrong way,” and they blame themselves. So the question is, did the way they tapered cause their problem or would that problem have arisen no matter how they tapered? Is the tapering revealing an iatrogenically caused problem in the body or is it causing it?

Healy: Actually we should come back to neurologists because you asked me about that, should we go to them? When I was training in medicine, I had a big medical textbook and I used to like it because the paper was nice and some of the images they had were great. They had a diagram or two that caught my eye back then. It was showing the peripheral nervous system and the sensory fibers and explaining that there was a problem that then was called causalgia and that meant, essentially, burning feet. They explained that women got this a lot, more than men. It was also linked to alcohol and this was at a stage when, at least as far as I was concerned, women drank less than men. So the idea that they were getting causalgia more was maybe what just caught my eye.

So this burning feet problem was a peripheral neuropathy but no one really understood what was going on. It turns out that not only alcohol and smoking and cancer chemotherapy drugs but prescription drugs can probably cause it too, but there is a great silence about anything else, the ‘good’ drugs causing it.

That’s what I think we’ve got with a lot of the antipsychotics, the antidepressants, the anticonvulsants, the benzodiazepines and things like pregabalin, they are openly marketed for controlling the pain of burning feet. Now, burning feet isn’t just caused by drugs, chemicals cause it.

The extraordinary thing about neurologists though is they are very good on the big nerves that cause a body to move around the place, but when it comes to these little fibers and the sensory things, the things where the neurologist might ask you, “Is this painful here now,” and you say yes, it is, awfully painful and you come back a few minutes later and you say no, it’s not as painful now as it was just a few minutes ago. This is the thing they are often not comfortable with, which is this subjectiveness of it, which is the sensory symptoms can change a lot.

It’s as though you’ve got a fluctuating grid and things aren’t identically the same at every stop in the grid every time you test it. It would be great to seduce them into it and if we can show that terribly common drugs like antidepressants can cause this kind of problem and that there is a way to regrow the nerve fibers, that’s the kind of thing that might really get them interested and happy to help. At the moment, if you go to a neurologist they are not going to be interested.

There does seem to be good evidence that at least some people are affected. It’s certainly not all people who go on antidepressants. It’s probably not even all the people who come off antidepressants that look like they might have a sensory neuropathy. The skin biopsies we do may not show a positive result in all those cases and the antibody tests which have also come on stream lately. This idea that when you get your auto-antibodies tested that you’ve got antibodies to the receptors that probably are the others that control whether your nerve fibers are going to regrow are not.

So, it’s going to take a lot of trial and error. People are going along and getting the tests who really have a genuine condition, but the tests seem to say no, you don’t. What we need to think about are other antibodies. Can we test or should we just stick with taking a skin biopsy down around the ankle, or should we be trying it elsewhere as well?

Moore: This all strikes me as hugely important and a valuable different direction to look for answers. It moves the conversation on from this just being a problem of the brain to a possible problem in the wider body.

Healy: It’s really interesting. We’ve sent questionnaires out to people with the PSSD, asking them what the range of symptoms they have are. People who’ve got PSSD say to us, “Look, you’ve got this all wrong. You’re focusing too much on the genitals only,” and they are right. We only focus on that though because if we can solve this problem about how that bit of skin gets numb, we’ll have the answer to lots of things, but when they report back, we give them the option to report loads of different symptoms and this emotional numbing and things like that, but equally, there is a lot of skin things like itch and allergies and things like that, which what people need to remember is most of the SSRIs come from antihistamines. So it’s not just the serotonin system that’s actually been affected.

If you think of histamine, you don’t think of the brain. You think of skin and guts, which is where a lot of the problems happen when you actually try to withdraw from these drugs.

Moore: Aren’t some antipsychotics antihistamines too? Isn’t that where they originated?

Healy: That is where they all come from. It would be nice to solve the problem with antidepressants, first of all, because they can cause awful problems but it just seems like the antipsychotics can be harder to get off, they are just more heavy-duty.

Moore: Thank you, David. Can we touch on tapering medication burdens?

Healy: Sure and I’ve got an interesting story or two to tell you about that. I’m involved with a group who have created TaperMD and it’s really the other people in Rxisk. There is Dee Mangin, Peter Wood, James Wood and one or two others who’ve been working on this day-in, day-out for a better part of five years at least and it fits in with something that people talk about called de-prescribing, which all sounds good.

Now, the thing is there is a lot of talk about it but in practice, we’re not actually deprescribing. People are ending up on more and more drugs. We are in a polypharmacy world, where a few years ago you were on one or two drugs. Now you are on four or five and it looks like the kids coming through are on four or five to begin with. By the time they get to be as old as me, goodness only knows how many they will be on.

One prescription that you need to save a life, that’s fine. Everybody thinks that’s maybe a reasonable trade-off, but if you’re on a bunch of them and most of them aren’t life-saving, you’re going to die earlier. Actually, the data coming out points that way, but it’s not enough to just be in favor of deprescribing. I’ll explain why in a moment but it’s a system problem.

This is typical of mental health as well, I see young people in clinics these days often who are on eight psychotropic drugs. It’s a delusional belief system. The psychiatrists buy an idea which comes from the pharmaceutical companies, which is if you have a bad reaction to an antidepressant, this means you are bipolar. They might say we shouldn’t have put you on the antidepressant to begin with, or else they’ll say, we’ll add an anticonvulsant to the antidepressant. Once they add the anticonvulsant in, if you’re not quite right, an antipsychotic is also good for bipolar disorder, we’ll add that in. You might say that I don’t have quite as good a focus as I had before, they say you’ve got ADHD, take this rating scale and it shows that you’re not quite as focused as you want to be and they say let’s give you a stimulant, which is pulling the opposite way to the antipsychotic.

They are building up a bunch of drugs rather than figuring that the antidepressant we gave you in the first instance is not right. Doctors have a terrible bias towards thinking anything that’s going wrong is linked to the condition, whether it’s blood pressure, mental problems, it’s linked to the condition.

If you get worse, if things go wrong, it means you have a worse condition, which means we need to give you more drugs and you can see this. The extraordinary thing for me is when people began talking about this first around 2004-2005, they were trying to sell drugs for bipolar disorder but also they sold the opportunity, when the SSRI and suicide thing came up, to say, “You should be taking anticonvulsants,” but if you said to them, if I give SSRIs to healthy volunteers, totally healthy, normal people, they can become suicidal, don’t you think it’s the drug causing this? They say, “No, these people must have had a latent bipolar disorder.” They are saying normal people aren’t real, we just didn’t know it until we gave this drug.

Let me give you a feel of where this can go. When I came over here to Canada first, I was working in a place called Guelph. I was doing a clinic there and I was part of a family mental health team who were taking up referrals that came from 70 family doctors in the area.

The patients they referred were very good referrals, they were people who’d been on antidepressants and maybe they weren’t working all that well after about 10 years. The doctor may have tried to add one or two other things in and the things went bad. So the question to me then was what do we do now? Are they people who they figured they might have ADHD and the referral was maybe because the doctor felt they weren’t absolutely sure and they wanted some expert input, me to say yes they do have ADHD, or whatever.

Anyway, things were going well and it was in the middle of the pandemic and for me, being in the clinic was great, to be with the real Canadians, because you weren’t meeting them anywhere else. I was doing a few things that were a little unorthodox that I’d been doing in the UK for a long time, which was when you write a letter on the person to the doctor who has referred them I was copying the person in. I checked with them and said look, this is what’s going to go into your record, do you want to read it and if there are things wrong, you can point that out the next time we meet. The other thing was when I emailed things to people, they had my email and if they had problems they could get in touch with me over the weekend. Some people were trying to withdraw from drugs and things like that.

I wasn’t trying to get everyone off their drugs. When people were on eight or nine drugs, I was trying to get it down by one or two drugs, all things being equal, slowly, without trying to push it. I was also saying things like we need to recognize you’ve been on this SSRI for 10 years. Some of the problems you’re talking about are that you are withdrawing from the drug even though you’re on it and there is no easy answer for this. No one has an answer, there is no drug approved for that.

The potential problem is, if you write a note like that to the patient and doctor, the doctor may feel they made a mistake. They are being accused of putting the person on the SSRI when they shouldn’t have done so. Almost always I have said, with this person’s problem, if I had seen them 10 years ago, I would have done exactly the same thing. We all have a problem. You, me and the patient, we all have a problem we need to work on.

One day, at the end of the year, I had an early morning Zoom meeting with the management and they said to me, “You are fired.” I was asking why and I didn’t believe what they told me to begin with. I thought it has to be all sorts of other things. There were all sorts of other things that sounded like reasonable hypotheses about what was going on, but in essence, what they said to me was, “What you’re doing is great if you’re doing it in private practice. If you had a shingle up in the door telling people that you’re open to getting them off the drugs they are on, not getting rid of them all but just paring it down and that you’re maybe open to the fact that drugs may be causing half of the problem they’ve got and people chose to come along that’d be great, but we run a public service and we don’t have the staff to stream patients, the ones who want to get off drugs to you and the ones who want more drugs to the other doctors.”

Essentially, the system was geared toward the sense that some people and some doctors want people to get more diagnoses and more drugs. So that’s what happens for all people. Most of the feedback that I was getting from the doctors or the patients I saw was this is great. We’ve talked for an hour and you haven’t told me I need drugs. This is a big surprise, but it turns out there were two or three doctors, probably four or five patients and I haven’t been told the figure, but everyone else, all of the other doctors and all of the other patients are trapped. They are in a system where they are going to be given more diagnoses and more pills whether they like it or not.

So, while there is a bunch of us talking about deprescribing and reducing medication burdens and TaperMD is the thing we’ve created to try to help with that, that’s not the way the tide is going. The tide is not going out, it’s still coming in, where most people are going to get more labels and more pills and there are some people who will be unhappy if they don’t get more diagnoses and more pills.

Moore: David, I am so sorry you had that experience.

Healy: It tells people how things are going. It’s not unique to me, I’m sure, but it really does point to the kind of situation we are in to which there is no easy answer.

Moore: This issue of polypharmacy, David, what is driving it? Do you think it’s because doctors generally believe that the drugs are benign and they can prescribe whatever they want with no problem? Or do you believe it’s because there is an unwillingness perhaps to question the medication burden already established?

Healy: It’s very hard to know and we’ve got the Green Party and Greta Thunberg talking about the pollution of the environment but equally, even the Green parties and young people of Greta’s generation seem to almost want to pollute their inner environment, more than ever before, which is an extraordinary contrast.

So, it comes back to this certain amount of insanity in the mental health system. One of the myths that turned up 20-odd years ago was that antipsychotics are neuro-protective. We can see with our own eyes that we’ve got people ending up with tardive dyskinesia and problems like this who have severe neurological problems. How on earth anyone can think that these drugs were neuro-protective, I don’t know, but they do. They actually think it intensely and if you ask them for the evidence they can’t actually provide it. This is delusional.

It’s hard to know how to solve it. We are working hard on this TaperMD approach, which seems to make sense. It’s recognizing that doctors don’t want to recognize the harms they do. That they just want to think that they are doing good.

Moore: Which you can sympathize with. If there are only so many levers that you can pull, you’re going to pull the easiest one, aren’t you?

Healy: Sure, but what we’re trying to do is to say look, if you’re going to do good, as much good as you can, you’re not doing more and more good every time you add a pill in. It looks like and all the evidence points to the fact that once you go much above three pills, you’re beginning—even if you’re putting the person on the drug for a condition that they have and the pill might have, once you get beyond three, you’re likely doing harm and you’re going to cause them to die earlier. When you’re trying to reduce medication burdens again, the evidence is that they are less likely to go into hospital and less likely to die earlier and actually just feel better.

So, there is a real issue and it’s trying to appeal to the sense of judgment of you are the doctor and you are the patient, as well, because they are actually part of the problem too. We are part of the problem too. It’s not a crime to want to help with things but what we need to recognize is we’ve got to make choices. Once you’re on too many helps, they are going to kill you. So, the trick is to sell the idea that to do the best amount of good, we need to control how many drugs you are on.

Moore: In terms of the increasing creep of the number of people on medications there has been a big focus on the elderly. I’ve seen articles from Canada reporting that in old people’s homes, 75% of the residents are on antipsychotics, not because they’ve ever had a psychotic experience but because it keeps them quiet and sedated, which is just dreadful to read.

Recently here in the UK, it’s been reported that children are being prescribed antidepressants in GP surgeries at very young ages. I could be wrong but I think there is only OCD that’s indicated for antidepressant treatment in youth. I wondered if Canada was similar and what you felt about it.

Healy: Yes, it is. You’ve got teenagers who are keen to go on these drugs and it can be a tricky problem. I can think of one person I saw, a terribly nice young man with a very nice mother who had tricky things to deal with that made him anxious an antidepressant would help. I told him about the risk of problems and he said, “Sure. No, I can see that. I can see that that’s a good case for not having them,” and things like that and he didn’t come back to see me.

He was there in the clinic with his mother and she was also a very reasonable, very nice woman. He didn’t come back to see me and he went elsewhere to get an antidepressant. My hunch was, one of the things linked to it was his mother was on one as well. So, it’s one of these cumulative things where if you’ve got parents who are on antidepressants who say, “Look, I am on them and they are okay. They are not causing all the awful things that that guy said they could cause,” you’re going to have a situation where if the child doesn’t go on them, it’s making the mother look bad, why is she on them kind of thing.

Talking about Peter Groot, there is also Peter Gøtzsche whom people listening to this will have heard of. Just last week, Peter had an article out which is reanalyzing the Prozac trials in kids. We all hear the whole time that Prozac is the one SSRI that works well in youth. It doesn’t. The FDA internally concluded when they approved it that it didn’t work in the trials that they were looking at, but they agreed to approve it anyway. It remained approved despite the fuss that blew up about paroxetine after the Panorama program (“The Secrets of Seroxat”), so they couldn’t approve that but everybody said, “At least you can use Prozac because that’s approved for kids who are depressed.” Exactly the same kind of results, it should not have been approved, but once they had approved it they weren’t going to go back.

It’s not that SSRIs are totally useless for kids, as you said, in OCD they can help but we have a system as well which feeds into this. One more point and it’s a political point, which is that systems can make good people bad.

I think what you see in all of health, but mental health in particular is you see some people who become part of the management system who end up doing terribly vindictive and inhumane things to people who don’t respond the way they should do. Rather than going back and saying we need to take more care with you, we need to look at this, not do the things we used to do because they are clearly making things worse. It’s at this point the delusional belief that everything that goes wrong is your condition. So if you’re not getting better, we’re just going to give you more of the same.

So, they are doing that as part of the system but also because above them is a group of managers who we didn’t have 20-30 years ago. Their job is to squeeze the system, so it’s using less money and saying to the bosses and the politicians who are above them, we’re getting better and better ourselves for less and less money. That’s putting pressure the whole way down to the system, which the person who comes along for help ultimately feels that the doctor or the nurse treating them is not in a position to deal with them as a human being. They are in a position, which is, if I don’t get you to tick the right boxes, my job is at risk. It’s a very toxic environment.

Moore: That tick-box culture is causing an awful lot of harm, isn’t it, because it’s not based on outcomes for the patients, it’s based upon things you can actively and easily measure as a throughput. We’ve dispensed X number of drugs or we’ve administered X number of procedures for people, rather than asking people how they feel.

Healy: Yes, and the system will work a lot better if we let people drive it, rather than trying to drive them.

Moore: It makes me think about when I had my interaction with my psychiatrist who prescribed to me and if I could go back and change that. What I would have liked her to say to me is, “James, if we prescribe you these drugs, they will make you feel different. That different might feel better or it might feel worse. So, come back in six weeks and we’ll talk about whether that is a better feeling or a worse feeling for you,” but there was no discussion whatsoever. It was just a “you will improve on these drugs, no question” and when I did go back and say I wasn’t, all of a sudden I wasn’t believed, as you mentioned earlier.

If we could have more honest discussions with people that the drugs do make you feel different, they can have an effect, but that effect might put you in a better place or it might put you in a worse place. I can’t help thinking that that would be more healthy.

Healy: Sure, but also to add into that, the key extra thing is you need to know that you are the expert on what’s happening to you.

We’re in a strange world, where if someone says, “Look, I’ve taken up smoking recently and it’s really helpful,” 99.5% of doctors would say, “I’m not going to treat you anymore if you keep on smoking,” but in fact, this is the world we are in, which is you can treat nervous problems with alcohol and smoking if you are a good doctor and patients are treating themselves often very successfully.

We need to take into account that there isn’t the good book and the bad book, or the good drug and the bad drug. These things are all tricky and to get a good outcome needs cooperation. Both the person who is going to take them and the person who says, “Look, what about this option?” You all need to be cooperating and open to change. I’ve learned something out of this, something that I didn’t expect has happened.

Moore: It’s rather like the dietary advice that we’ve been given for probably two decades now to avoid fat in our diets, but no mention at all of sugar and that’s primarily because there is an industry lobby body for sugar but not one for fat.

Healy: It’s exactly the same. We have been herded along by lobby groups and that’s what’s happening to us. We are in a herd, we are being herded along particular paths and when it’s inconvenient, but when the lobby groups aren’t making money out of that path, they will switch us over to maybe the psychedelics, or whatever.

Moore: David, it’s always a pleasure and an education to get to talk about these things with you. I have to say that the articles on Rxisk about PSSD and neuropathy are fascinating and I do recommend people go and read them, not just for the blogs but for the response from commenters too. It’s the idea of picking up the rugby ball and running with it, which is fantastic to see.

Before we wrap up, I do just want to acknowledge that I am so grateful to you because you are one of the few doctors who will get down in the weeds with people like me who have experienced difficulties and have an eye-level conversation with people about their experiences and what they might have learned.

There is so much humility in doing that that’s missing from many doctors that I’ve interacted with who just put themselves on a pedestal. Also, your long history of curiosity and of looking at these things through a fresh lens and a different perspective.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post David Healy – Polluting Our Internal Environments: The Perils of Polypharmacy appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/11/david-healy-polluting-our-internal-environments-perils-polypharmacy/feed/ 154 https://www.madinamerica.com/2022/11/anders-sorensen-tackling-psychiatric-drug-withdrawal-research-practice/ https://www.madinamerica.com/2022/11/anders-sorensen-tackling-psychiatric-drug-withdrawal-research-practice/#comments Sat, 05 Nov 2022 10:01:05 +0000 https://www.madinamerica.com/?p=239250 Anders Sørenson is a Danish clinical psychologist with a special interest in psychiatric drug withdrawal. He has undertaken research which assesses the state of guidance on psychiatric drug withdrawal and paid close attention to tapering methods with the aim of identifying approaches which might make withdrawal more tolerable for people.

The post Anders Sørensen – Tackling Psychiatric Drug Withdrawal Through Research and in Practice appeared first on Mad In America.

]]> On the Mad in America podcast this week we are sharing a special interview that’s being done as part of World Tapering Day. World Tapering Day is being held on the 4^th, 5^th, and 6^th of November 2022 and it aims to raise global awareness of the need to safely taper psychotropic drugs. It has been organized by people with personal experience of the severe difficulties that can arise when stopping antidepressants, antipsychotics, or benzodiazepines. If you would like to find out more or participate, you can visit the website WorldTaperingDay.org where you can sign up for a range of free-to-view webinars.

Our guest today is Anders Sørenson. Anders is a Danish clinical psychologist with a special interest in psychiatric drug withdrawal. He has undertaken research which assesses the state of guidance on psychiatric drug withdrawal. He has also paid close attention to tapering methods with the aim of identifying approaches which might make withdrawal more tolerable for people.

In addition to his research work, Anders utilizes psychotherapy in his private practice when helping people to come off the drugs and we’ll get to talk about some of that in this interview.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Anders, welcome. I’m so pleased that you could join me today.

Anders Sørensen: Thank you, me too. Thanks for having me.

Moore: Could you tell us a little bit about you and how it was you came to be interested in issues around withdrawal from psychiatric drugs?

Sørensen: The long story short is that I like good science and I like studying what good science is, which is a research field in its own right. The science of science, if you may.  

When you’re really interested in quality science and then dive into psychiatric research, your heart is kind of broken. It looks convincing and it looks persuasive and it’s written in a very academic and persuasive language with all the brain scans and the biological measures, the fancy words and all the theories. In reality, it is replete with assumptions and bias, especially regarding the theories we have about how psychiatric drugs work. That’s what got me into this field.

When you study the literature in this light, what happens, at least for me and some colleagues, is that we end up understanding psychiatric drugs as purely symptomatic treatment. They can be helpful for some people and some situations, preferably in acute crisis and short-term, but in a fundamentally different way than what we’re told about various biological abnormalities.

I did my bachelor’s degree back in 2014 on epigenetics, which I shouldn’t dive too much into but the idea was entitled “The Implications of Epigenetics on Psychiatric Drug Treatment.” It was aiming to debunk these basic assumptions in talking about antidepressants and antipsychotics and there being any causal relationship between any brain abnormality and the reason for intervening. It just doesn’t hold up; it is not true, and I believe we can make that argument using pure data and logic.

My next question was then, how then do psychiatric drugs work? It’s not that they don’t work, it’s that they work in a different way than we have been told. In psychology there is a concept known as emotion regulation; let’s consider the definition. Emotion regulation in psychology is defined as the processes by which individuals influence which emotions they have, when they have them and how they experience and express these emotions. Another definition is actions taken by a person to modify or change emotions in order to reduce their intensity.

Now, if we leave aside the idea of the drugs treating any biological illnesses, these concepts kind of make sense for what psychiatric drugs do. They are emotion regulation strategies, things we take to regulate our minds and our moods; they are psychoactive substances. No biological magic is happening there.

The reason this is interesting is that emotion regulation has received a lot of attention in clinical psychology because it appears that it matters how we regulate our emotions and thoughts. We know that strategies like avoidance, suppression, distraction, worrying, rumination, or isolating ourselves, all these strategies tend to correlate with psychopathology and actually can predict it. They often work here and now, but then tend to backfire in the long term, creating other problems. Whereas, strategies like acceptance, problem-solving, allowing emotions to unfold, actually listening to them, cognitive restructuring, detached mindfulness, all these fancy psychological terms, tend to correlate with low levels of psychopathology.

So I asked myself the question, what is the difference between helping people come off psychiatric drugs, which is a way of numbing the mind and artificially controlling emotions and doing what I would otherwise do as a psychologist? I concluded in my master’s thesis back in 2016 that these are largely the same. I can draw on my psychotherapeutic tools to help people come off psychiatric drugs with one major difference, which is why we’re here today, the withdrawal symptoms.

You can’t just stop and you can’t just remove drugs as a strategy because you get dependent on them. I discovered early with my first patients that they couldn’t just stop and the withdrawal reactions that they experienced were way worse, more extreme and longer lasting than what we were told. I decided to trust my patients and not so much the books because I’ve seen other things in the psychiatry books that turned out to not be true. So that set the stage for where I am now.

Moore: In 2021, you authored a paper which reviewed an important aspect of how antidepressants affect the body. We sometimes hear about brain imaging techniques, PET or SPECT scans, being used to study what is known as serotonin transporter occupancy. So, before we talk about the findings of your research, could you tell us a little bit about what serotonin transporter occupancy is and why it might be important in understanding withdrawal problems?

Sørensen: Yes, of course, because it’s the center of the main argument here. The serotonin transporter is a receptor and it’s the primary target receptor of most antidepressants. That’s what psychiatric drugs do, they occupy receptors. The brain has a function to reuptake its serotonin from the synaptic cleft and that’s completed by the serotonin transporter. So, all you need to know is that occupancy is a term for what the drugs do, they occupy receptors.

Serotonin transporter occupancy is the mechanism by which most antidepressants raise serotonin levels in the brain. Selectivity is an illusion, I should say and it’s reductionist to only look at one receptor. The first “S” in the term “SSRI, “selective,” actually is not possible. Ask anyone who studies the brain and they’ll say it’s not possible to just selectively target one receptor and then increase or decrease that, but it’s the primary biological mechanism of action. That’s why we would expect withdrawal symptoms to somewhat follow the degree to which the drug occupies this receptor.

The point is that, once we understand brain chemistry is not out of balance, but it’s actually under what is called homeostatic control, we then understand that what the drugs do to our brain chemistry is not a correction, it’s not fixing stuff. It’s actually a perturbation, which the brain is fundamentally hardwired into identifying, recognizing, and then counteracting, and that’s the theory right now for why we get withdrawal symptoms.

So, if you raise serotonin levels with the drugs, then the body reduces its sensitivity to serotonin. Similarly, if you reduce your sensitivity to dopamine using antipsychotics, the body just says “Hell no, I’ll spit out more dopamine.” So, it will always regulate in the opposite direction, regardless of how we feel about the drug.

The problem with withdrawal symptoms, like serotonin levels, is that when you reduce the drug dose, the affected levels of neurotransmitters will reduce faster than the adaptation.  There is a time lag there and it’s that period of time when we’ll experience withdrawal symptoms. The body has to readapt to a lower dose and that takes time depending on how much you reduce the dose. Hence the whole idea of gradual tapering, to give the body this task in small pieces.

Moore: I was interested to read in your paper that the PET and SPECT scans that are used can’t actually tell anything about the effect of these drugs on whatever depression is in the brain, but they can act as a proxy measure for how the drugs affect the brain. Is that right?

Sørensen: Absolutely, right. I think we have plenty of evidence of that and that’s the irony of all. Depression doesn’t have anything to do with imbalances in the system, but that doesn’t change the fact that the drugs do affect serotonin levels. You can’t talk about withdrawal symptoms without talking about the clinical drug effect. This definitely is a biological effect on the brain, which means that the body adapts and this definitely has relevance for withdrawal symptoms but not so much for the clinical effect.

This adaptation, as I see it, is a fundamental thing that all long-term psychiatric drug treatment has against it. The body will eventually adapt and when you stop the drug it can create this illusion of an effect because you stop the drug and you feel worse. Is that because you got into contact with the underlying withdrawal state, or is that because the drugs work? The solution to that, which is why we are here, is gradual tapering to solve that problem.

Moore: Turning to the results of your work, some of the studies you looked at showed that even a low dose of an SSRI can occupy these serotonin transporters to a great extent. So, in the paper, you give the example of fluoxetine or Prozac. The studies reviewed found that just a one-milligram dose might give an occupancy rate of between 24 and 36 percent. So, that one milligram is doing a lot of work in the brain, isn’t it?

Sørensen: Exactly, and that’s what we are trying to get people to understand. It looks absolutely absurd because that one milligram is one-tenth of the smallest pill. We also have data for Effexor (venlafaxine) which has been measured down to one-fifteenth of the smallest standard available pill. It looks absurd, you almost can’t see it when you put it on the table but it has a very high occupancy effect.

When we say that one milligram has between 24 and 36 percent occupancy of the serotonin transporter, what that means is that out of the 100 percent, out of all your serotonin transporter receptors, between 24 and 36 percent of them are occupied by one milligram and that’s the whole idea. These data show how extremely potent antidepressants are at low doses because, in fact, these aren’t low doses, and so the problem is obvious.

From looking at the resulting graphs you can see the relationship between dose and occupancy: as dose increases, occupancy increases. The biological effect on the brain does increase extremely rapidly in the lower dose range and then it plateaus. Now, the problem is obvious. Small reductions in the lower dose range will have large effects on serotonin transporter occupancy and those sudden drops in serotonin levels will increase the risk of severe withdrawal symptoms.

Moore: That’s important, isn’t it, because people listening to this will have experienced when you go to your doctor and the doctor says, “You’re on a very low dose. I don’t see any reason why it should be a problem for you to come off,” but the review work that you did explains really well why it gets so difficult for people as they get to lower doses.

Sørensen: Many people will get stuck at lower doses and it looks funny, these small dose reduction schemes. Sometimes, you can actually make some pretty dramatic reductions, if you’re on a high dose. Now, I shouldn’t put any rules up here, because some can and some can’t, but some definitely can reduce the dose in the higher dose range quite dramatically with no other consequences and few side effects, but no withdrawal symptoms.

Then at some point, you hit this plateau and then just five or 10 percent of your dose will have dramatic effects, and if you don’t know that the relationship between dose and occupancy is non-linear, that makes absolutely no sense. That’s where research comes second to the lay-people community. They’ve known this for years, maybe even decades but have kind of been laughed off by academic psychiatry. They haven’t been believed that such a small dose reduction can have a large effect and now we have the data. These are hardcore biological brain scans of biological effects, which is really good. So, the patients were right.

Moore: It is really validating, I think, for those people who know themselves that they might have had an easier time to begin with but a terrible time at some point in the lower dose range. They’ve shared this with their doctor who says, “That doesn’t make sense, because the effects should get smaller with a lower dose,” but this work proves the mechanism by which that isn’t true.

In the paper then you go on to talk about what’s called hyperbolic dose reduction, as a way of mitigating this problem. Can you tell us why a hyperbolic reduction might be preferable to a fixed reduction rate or equal percentage decreases?

Sørensen: This goes back to understanding why withdrawal symptoms occur. It’s a readaptation required in the brain. If you just stop the drug at the lowest standard available dose or even half of that, you stop the drug at a dose corresponding to very high occupancy rates and the body can’t keep up. So we’re trying to solve that problem.

The solution is quite obvious, you need to go way below the lowest dose. Sometimes, down to one-tenth or one-fifteenth of the lowest dose. Linear tapering would be, for example, reducing by five milligrams each time all the way to zero. We show that each five milligrams you take off will be a much larger reduction than the previous one.

The solution to that is what’s been called hyperbolic tapering. If you have to put some rule, which I rarely do, it means that you should reduce by some percentage of your previous dose, not of the original dose and that will mean that the dose reductions get smaller and smaller. So, hyperbolic tapering is all about making the reductions kind of fit this hyperbolic dose occupancy and it means that as you approach zero, your dose reductions need to be smaller and smaller.

That’s a way of unblocking the serotonin transporter gradually, which is what we want and it requires a hyperbolic reduction of the dose. If you reduce in the same increments, the next reduction will always correspond to a larger occupancy reduction and that’s where you’ll have problems.

Moore: Has there been any work done to rerun these PET or SPECT scans on people who have completely withdrawn to see whether any different data that arises afterwards? I am guessing no.

Sørensen: Sadly, no, we still have a long way to go. Sometimes we still have to convince people that withdrawal symptoms actually exist and that they are called withdrawal symptoms. We are allowed to call it withdrawal symptoms in the major papers now, not discontinuation symptoms, but no, that kind of research I haven’t seen.

Moore: The other part of this is for people facing withdrawal there is a significant physical challenge there but there is a psychological challenge too. You are a psychologist and work in clinic so you’ve already recognized the importance of helping people practically deal with withdrawal and aiding them with the psychological issues that arise during the process of coming off the drugs.

Could you tell us a little bit about the kind of psychological challenges that people withdrawing face and how psychological therapy might help them through those difficulties?

Sørensen: So, one thing is minimizing the withdrawal problem with hyperbolic tapering. The next thing is helping people get through withdrawal because most people cannot completely avoid withdrawal symptoms, especially in the last phase of tapering. You’ll need to learn how to get through withdrawal symptoms, how to regulate and manage them while they are there, and we have a lot of psychological methods that I find helpful.

The first question is, how do you get through withdrawal? Then the next psychological question is that we just established that the drug is a coping mechanism, nothing else. So obviously, you’ll need other strategies once off the drug. If you’re used to regulating your mind with a substance that sedates it, dampens it, creates a distance, you’ll need other strategies to prevent relapse, definitely.

So, the reason that withdrawal symptoms are a problem is that they can pull in your attention. They can capture your focus, they can steal it from other things you want to do, like socialize or enjoy things, stay focused, or sleep even. We can solve that problem psychologically.

Psychologically speaking, your attention is something you can train. You can train to be in distress and not give it your focus. It’s a very fluffy thing to try to explain, that’s why we have all sorts of experiential exercises, but the theory is you can actually learn to not give focus, not fight it, not suppress it, but detach from it. That to me is absolutely the strongest psychological friend in psychiatric drug withdrawal because you can actually learn to not pay attention to even pretty serious symptoms, and most people will find that they have a better day doing stuff, to the degree that they can do stuff.

That’s the fundamental problem, it’s difficult because your attention is constantly being pulled towards the symptoms and your distress, but it doesn’t change that you could learn it. You can discover how to be in distress and not give the distress focus. Once we understand that withdrawal symptoms are like a wound that your body knows how to heal, it will heal, but we can’t intervene. We can’t speed up the process, but we can let the wound be a wound and be engaged in other stuff. It sounds difficult, I know, but it’s possible.

We have used various experiential exercises to actually discover this, and then you will discover that withdrawal symptoms like catastrophizing thoughts or depressed feelings tend to step into the background when you focus externally. It’s very powerful to discover that mechanism. That’s what gets you through weeks, months and sometimes years of withdrawal.

Moore: In the community of people affected by this, there are some who say, “I’ve tried to accept what happened to me, the drugging and the difficulties and all the rest of it.” They try their best to coexist with it. Then there might be another group of people who say, “I can never accept what was done to me,” and fight against it every day. Is it healthy, do you think, to try and accept what we can’t change and to try and live with those difficult experiences?

Sørensen: Yes, as long as it doesn’t sound like giving up, because you’re entitled to be angry. You didn’t put yourself in the situation of getting dependent on prescription drugs. All emotions you may have are okay. Acceptance can sound like giving up, it has a negative vibe to it. Not in my opinion, it’s the opposite of fighting against what’s there and withdrawal is difficult enough already.

So, the best way through the symptoms is some degree of radical acceptance and forced mindfulness. It can remove a whole psychological layer of worries and ruminations and threat-monitoring. All the things that we do to protect ourselves but that actually end up working against us. I promise you, you won’t find anything of value in the withdrawal emotions, because it can look exactly like depression. It can look exactly like anxiety, but it’s not. The emotions are artificial, they just present themselves as very real.

Besides the correct tapering, there is an issue of helping people get through periods that feel like depression but are not depression. Normally, when you’re depressed you should figure out what you’re depressed about and do something about that. But in these exact emotions, there is absolutely nothing in there. It’s a product of adaptation.

Moore: It’s a cruel irony that many of the effects people get from coming off the drugs mimic the reasons they were prescribed the drugs in the first place. Then you go to a doctor who knows nothing about withdrawal or tapering and they say, “Well, it’s just your illness returning,” but we know that’s not the case, don’t we?

Sørensen: Yes, and that’s really my day at the office in a nutshell. Obviously, first avoiding this. Then, sometimes we can’t avoid withdrawal and sometimes, we can minimize it. Then it’s a question of going through these emotions a couple of times. That’s really strong stuff to actually have a physical and emotional experience of, feeling absolutely horrible and depressed, but experiencing that will fade and that’s what we need to help people get through.

Sadly, that happens rarely and that gets back to your definitions of withdrawal symptoms.  They are often understated by doctors compared to what people who experience it say. That’s a problem because your doctor will look up guidelines and see withdrawal symptoms are something self-limiting, brief and mild, lasting maybe a couple of weeks, that’s the professional definition. This results in a lot of withdrawal reactions routinely getting misinterpreted.

Moore: We’ve talked about the fact that there is a wide range of experiences that people have when they try to stop antidepressants. Some can seem to get off without too much trouble, some have problems when they taper but they are fine afterwards but there are a group of people who seem to struggle for long periods after they’ve tapered. What is your experience of people who go on to suffer long-term problems after tapering off antidepressants?

Sørensen: That’s one of the really dark chapters of psychopharmacology that leads to permanent damage. I see it rarely but it definitely exists. Of the people I see with prolonged withdrawal symptoms, some of them may have tapered incorrectly or dropped from a dose that was too high. It’s as if the body can get stuck. Even though we try to reintroduce the drug, the damage has been done and it needs to recalibrate with time.

So, one explanation could be simply incorrect tapering, which is why we are here, teaching people how to do it correctly. Another thing I see is people experiencing very severe side effects when starting the drugs. Now, psychiatry has succeeded in telling us to just keep taking the drug and it will pass.

The reason I am saying that is that some of the people I see have been only taking the drugs for maybe weeks, maybe months, so they haven’t become that dependent on them. They tapered off the drug and these side effects kept on going. I think that’s really where it all starts, if you have severe side effects when you start the drug you can also get stuck. So, either incorrect tapering or extreme sensitivity to the drug’s adverse effects.

The problem is that we can’t know in advance. Any given person cannot know whether they are very sensitive or whether they will have problems getting on and off the drug. There is no way of predicting it, so, it’s gambling to some extent.

Moore: It is very much a gamble for people, isn’t it, because they might not know they’ve got a problem until several years into treatment. Then, when they try to stop and make a small reduction, they are in the most difficult place imaginable.

Sørensen: Yes, and they didn’t ask for that and the worst of all is that we aren’t informed about this. It’s in the science but the whole idea of having a guideline is that not every doctor or patient has to go through all the scientific literature. So, we hire some people to make a guideline condensing their research literature. That is a huge problem and it’s a huge gatekeeper for conflicts of interest because much of the data will not be in those guidelines for many reasons, meaning that we are uninformed.

It’s the saddest days at the office for me when I have to be the one explaining to people that they are actually dependent on this stuff, they can’t just stop. It can be severe for them to get off and it could take years.

Moore: You have a fairly unique perspective in having done PhD research on this and also helping people face-to-face in clinical practice. What have your experiences, both in research and in clinic, taught you about the best way to approach withdrawal from psychiatric drugs?

Sørensen: First of all, hyperbolic tapering is a must. It has to be flexible in some ways because it’s individual. These graphs measure the average, so, you can’t just go into the graph and read off the dose and calculate the degree of occupancy. So there’s a personalized and individual aspect to it.

That’s the first thing, it’s really difficult to make schemes and percentage rules. There is really just reducing, stabilizing, reducing, stabilizing, and then of course, really understanding how severe withdrawal symptoms can be, so you don’t get caught up in analyzing it and thinking this is you without the drug.

Coming off psychiatric drugs to me is more than withdrawal and chemistry, it involves other strategies. If you’re used to stopping your worries and your ruminations and your traumas with a drug, those often are going to resurface unless you have other treatments or strategies in place. So there is an aspect of learning other strategies, which to me is what psychotherapy is all about. That’s why I am here as a psychologist.

Psychotherapy is trying to answer the question, how do we regulate our minds with our minds? How do we stop worrying and ruminating without taking something to sedate the thoughts? We can do that, we have strategies available, especially from metacognitive therapy and some meditation practices on how to stop worrying. We know how to do that and that if coming off the psychiatric drugs means that your thoughts and feelings come alive again, which they often do, you’ll need new strategies.

It is also more than that. Often it involves actually changing your mindset and your beliefs around what mental illness is, away from this idea of having to take something to regulate our minds, away from the idea of pain being pathology, all these things that psychiatry has told us.

I should acknowledge and emphasize now that psychopathology is what we should call it here. It does exist, it’s just not a biological pathology in the way we’re told. It’s what it is that we’re debating, whether it’s a biological illness or it’s a reaction to something. So, changing your whole mindset around your condition, your emotional state of mind as a reaction to something that we have to figure out. Then do something about that, away from this whole idea of being faulty, broken, diseased. If you don’t want to wind up on the drug again, we need to get to these basic beliefs you have about what your emotions are and what’s wrong with you, and what’s not wrong with you. What you’re depressed about or what you’re psychotic about.

Many of my patients have never had those questions asked before in clinical care because it’s been out of the disease model. So, sometimes, coming off psychiatric drugs can be much more than just tapering the drug and I find sometimes that needs a bit more discussion.

Moore: You talked today about the physical dependence that arises because these drugs are acting on receptors in our brain, also you were talking about the psychological dependence that arises when a doctor tells us you have a broken brain and you need to rely on the drugs. So, I take that as the reason for needing a response to the physical dependence part, but also to the psychological dependence part too.

Sørensen: Exactly. It’s not free to give this message to people that you’re broken, you need this, there is a lot implied in that message. You’ll start to live up to that, making it a part of your identity and there is no way you’ll believe that you have more control over your mind when you have to regulate it with a substance. It confirms the beliefs about this being fundamentally uncontrollable. My mind is uncontrollable, it’s overwhelming, and I don’t understand my emotions.

It’ll feel better sometimes to not feel that, that could be attractive, it could be a way of calming the mind, but it’s not solving the problem long-term. So yes, we are absolutely influencing in a negative way our very basic psychological beliefs about who we are and what a mind is, what a thought is and how we can regulate it when given this medical model explanation.

Moore: Is there anything else important that we should share with listeners?

Sørensen: The conclusion or the implication is obvious. If you’ve tried coming off your antidepressants in a linear or fixed way, like using linear or fixed-dose reductions and you’ve deteriorated, which I guess you have if you’ve taken it for long periods of time, you haven’t tried actually tapering. That’s really the headline here. If you tried coming off psychiatric drugs not in a hyperbolic way, you haven’t tried tapering. The reaction you experienced may say absolutely nothing about who you are without the drug and what the drug is doing for you. That’s really important to know because people who’ve tried being in withdrawal will be scared of trying again. So it’s really important to say this is different.

Hyperbolic tapering works. We don’t have those big fancy randomized control trials yet. So, we can’t say it from the top of the evidence hierarchy yet, but from seeing this personally and from having all these indirect biological measures, I am convinced.

The perspective is bigger because we have no clue whatsoever whether long-term antidepressant treatment actually prevents relapse because 100 percent of the studies cited as evidence of long-term treatment are flawed by not considering withdrawal symptoms. Either they just stopped it from one day to another or with a very rapid tapering, meaning a couple of weeks or so. These studies are biased by withdrawal symptoms. So that’s a really shocking thing. So many people take these drugs and we don’t know whether they are actually necessary.

Moore: I just want to thank you for all the work that you’ve done and for the help that you provide to people because it’s all contributing to a rich pool of information on many aspects of withdrawal and tapering and why people struggle so much. We really need to convince many prescribers that while getting people on the drugs is very easy, getting people off them isn’t anywhere near as straightforward and needs special consideration.

Sørensen: Yes, it’s a crisis indeed for many people, and one they didn’t ask for.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Anders Sørensen – Tackling Psychiatric Drug Withdrawal Through Research and in Practice appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/11/anders-sorensen-tackling-psychiatric-drug-withdrawal-research-practice/feed/ 4 https://www.madinamerica.com/2022/09/jon-jureidini-evidence-based-medicine-post-truth-world/ https://www.madinamerica.com/2022/09/jon-jureidini-evidence-based-medicine-post-truth-world/#comments Wed, 07 Sep 2022 10:01:38 +0000 https://www.madinamerica.com/?p=237050 In this interview, Jon Jureidini talks about the issues with evidence-based medicine and describes what led to the debasement of a system originally conceived to challenge extravagant claims and poor science.

The post Jon Jureidini–Evidence-Based Medicine in a Post-Truth World appeared first on Mad In America.

]]> This week on the Mad in America podcast, we are joined by Dr. Jon Jureidini.

Jon is a child psychiatrist who also trained in philosophy, critical appraisal and psychotherapy. He has a continuing appointment as a professor in the School of Medicine at the University of Adelaide. He heads Adelaide University’s Critical and Ethical Mental Health research group, which conducts research, teaching and advocacy to promote safer, more effective and more ethical research and practice in mental health; and the Paediatric Mental Health Training Unit, providing training and support to medical students, GPs, allied health professionals, teachers and counsellors in non-pathologising approaches to primary care mental health.

He has an international reputation for his work on the evidence base for psychiatry and is a strong advocate for addressing the social determinants of mental health.

Jon, together with co-author Leemon B. McHenry, wrote the book The Illusion of Evidence-Based Medicine published in 2020. The book was followed by an opinion piece which appeared in the British Medical Journal in March 2022.

In this interview, we discuss the issues with evidence-based medicine and what led to the debasement of a system originally conceived to challenge extravagant claims and poor science.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Dr. Jureidini, welcome. Thank you so much for joining me today for the Mad in America podcast.

Jon Jureidini: It’s a real pleasure to be here. Thank you.

Moore: We’re here today to talk about your 2020 book, authored with Leemon B. McHenry, entitled The Illusion of Evidence-Based Medicine. I’d like to come on to talk about the book and the paper but first, I was interested to know a little about you.

You’re a professor of psychiatry and pediatrics at the University of Adelaide in Australia and you’ve written extensively on clinical trials, misleading drug promotion and corporate influence in medical education. I just wondered how was it that you came to have this kind of critical focus on these issues.

Jureidini: The first experience I had of thinking this might be an issue was actually something that seems quite trivial. I was at a conference and it was in an exhibition hall of drug companies and I raced around and grabbed all the freebies I could. I sat down in a chair and looked at this crap that I’d accumulated that I didn’t really want and I thought, something strange is going on here. That kind of piqued my interest.

It happened that our professor of pharmacology had put around a series of guidelines about interacting with industry and I kind of laughed at it and thought, how Calvinist. After having had that response, I reflected more and then I ran into Peter Mansfield, who ran an organization called Healthy Skepticism, which was quite influential in its time. He educated me about these issues.

Moore: Before we turn to the book, I wanted to ask about the concept of evidence-based medicine. Is it just an academic concern which should involve journal editors and researchers or should it also be of concern to the average person in the street?

Jureidini: The trouble is the average person is not in a position to appraise the evidence and is therefore reliant on other people to do that. Maybe that’s a bit of an overstatement because there are people outside of medicine who have done a fabulous job of appraising the evidence, Robert Whitaker being one of them. But the average person considering decisions about their own health isn’t well equipped to do that kind of analysis.

I’ve been accused of scaremongering and I say, “It’s not me creating the fear. It’s actually a very scary business, evidence-based medicine, and something we should be very concerned about.”

Moore: Your book tells a story of the many ways in which the profit-driven motive of the pharmaceutical industry undermines the integrity of science and you talk of the corrupting influence of commercial objectives.

There are many players in this process, from pharmaceutical manufacturers and their research and marketing teams, to journal editors, medical education providers and then ultimately prescribers. Mentioned often in the book is the role of what’s called key opinion leaders. Particularly in psychiatry, key opinion leaders seem to be very prominent. Could describe for us what a key opinion leader is and some of the ways in which they interfere with and influence the science?

Jureidini: That term is used by the pharmaceutical industry, primarily. What they are looking for are like-minded individuals who share their views about medicine and who can be used to unwittingly promote their products. A typical situation would be a young clinician with academic aspirations who has some ideas that are broadly sympathetic to the drug company’s agenda. The drug company recognizes that, grooms the young academic and helps them in their career.

One of the things that’s really hard when you’re getting started as a medical academic is to get research funding. The people who’ve already been funded are the people who then get funded, so you’ve got to find a way to jump onto that treadmill. Drug company sponsorship for research is a good way of doing that.

It happens in two ways. One, you get invited to become a chief investigator in a study that’s already been designed by a company. The duties of the chief investigator are not particularly onerous, you just have to contribute patients and your unit gets well rewarded for that and you get to go to chief investigators meetings which are typically held in nice cities around the world, that’s one way.

The other way is investigator-initiated research. If I’ve got an idea about how to use an existing drug, it won’t matter much to the company about whether there’s any scientific merit in that proposal. They’ll want to support me in doing that. They might get a publication out of it with their name on it but, more importantly, they are grooming me as a budding academic researcher and then are able to trade off my reputation. They will invite me to give talks at conferences, to participate in company-sponsored events at conferences that are disguised to look like they’re part of the legitimate program, and sometimes they are because companies influence the conference organizers.

The key opinion leader is not generally motivated by financial reward although there can be, if not direct financial reward to the key opinion leaders, certainly to their academic research teams. It’s more about career advancement. If you look at heads of department around Australia and I have reasonable confidence in saying around America too, you will struggle to find somebody who has got to a head of department position in psychiatry without having a leg up from industry.

Moore: It comes across in the book that key opinion leaders seem to be amplifying product marketing messages to give a seal of approval and contributing to perhaps the ghostwriting or ghost management really of journal articles, so they’re quite enmeshed in the process, aren’t they?

Jureidini: Absolutely and the other thing that a key opinion leader can do that a drug rep can’t do is promote off-label prescribing. The company itself is prohibited from promoting to doctors that they should use drugs off label. A key opinion leader is not, and so the key opinion leader is the person who promotes off-label prescribing with all of the dangers associated with that.

Now, off-label prescribing in and of itself is not necessarily a bad thing but most off-label prescribing that occurs in psychiatry is poorly thought out and poorly supported by evidence.

Moore: There were some terms in the book that I hadn’t come across before, you talk about astroturfing and evergreening, so could you tell us more about those?

Jureidini: Astroturfing is about fabricating consumer groups. The highest profile parents group for ADHD is actually a drug company-sponsored entity. What you get out of that is a consumer voice which can be more powerful than something that’s coming from industry. It appears to be independent, but it’s not.

Evergreening is about patent extension. A patent is usually 20 years but by the time the drug gets onto the market, there might be only a few years left. If you can come up with a new indication for the drug then you can get an extension of the patent. With blockbuster drugs—ones that turnover at least a billion dollars a year—just 12 months of patent extension is very valuable to a company. So you get these more-or-less fabricated conditions like social anxiety disorder or female sexual dysfunction that are used purely and cynically to extend patents and make profits for industry.

Moore: In the book, it’s mentioned that in the 1800s and early 1900s, the pharmaceutical companies’ extravagant claims for their drugs at the time were labeled the “Great American Fraud.” This created the need to regulate and police their claims and ultimately led to evidence-based medicine as an attempt to bring that into line. 

After reading your book, I had to ask myself, are we really any better off now in 2022 than we were in those wild times?

Jureidini: I think we are. I don’t want to denigrate the concept of evidence-based medicine, because evidence-based decision-making is a good thing. Our concern is that true evidence-based medicine isn’t what’s practiced, largely because of the influence of industry but there are other reasons too.

One of the most striking shortcomings in the current approach to evidence in medicine is the absence of rigorously trying to set out to disprove a favorite hypothesis. What happens mostly in medicine is that people get an idea that they like and then try and massage the data to support that point of view rather than having a good idea and thinking “I’d really like that idea to be meaningful but before I go out there and tell people that I’ve got this great idea, I want to do whatever I can to challenge the idea.”

Drug companies in particular do bigger and bigger studies with more and more people in them which makes it more likely that the results are going to reach statistical significance. The general perception is the bigger the study the better. But actually, if you can demonstrate in a very small study that there’s a significant effect, that’s much more meaningful than demonstrating it in a large study.

In our book, we talk about research into scurvy in the 18^th century. There were two patients in each group in that study but because lime juice containing vitamin C was actually a straightforward preventative and cure for scurvy, it only took a total study of 14 people to prove a really important medical development.

I think that should stand as a paradigm of good practice, that if you can show something in a small study and if it’s something stands out, then that’s much more likely to be meaningful than something that you need a meta-analysis of 15 different studies to show a fractional benefit, which is the case with antidepressants.

Moore: Talking a little bit about clinical trials, in the book you go into some detail about GlaxoSmithKline’s infamous Study 329 which evaluated the antidepressant paroxetine, and also Forest Laboratory’s citalopram study. In the book, you say, “In a post-truth world we want to restore objectivity to the scientific testing of medicines.”

That’s quite a goal and quite a target, isn’t it? How could we start to move toward a place where we can have confidence that clinical trials are free from corporate influence and conducted for science rather than acting as a marketing tool for a particular drug?

Jureidini: The more or less complete solution to that would be to take pharmaceutical research out of industry. It was put into industry because that seemed to be the most economically feasible way of doing it. It proved to be economically feasible for industry but not beneficial for patients.

It’s not the case that industry generously pays for research. Industry passes on all of the cost of research and more in the way that they market their drugs. So they carry out all this research and still make huge profits and they tell us how expensive research is to do. If that were all true then they should be really happy to relieve themselves of the responsibility of research and a tax could be exacted on them to cover that research or the money instead of going to the cost of drugs could go to government who could then commission properly conducted research, but that’s not going to happen.

Something that could happen and would be feasible would be that people carrying out research could only publish just their data, not their conclusions or any analysis of it. The data would be published on a suitable website with access for properly qualified people who could then analyze the data and report on it. The company could as well, but they would have no more access to the data than an independent person would.

There was an initiative called All Trials, which attracted a lot of attention. It was a step forward in that it required that the protocols of trials be published and the results always being published. In fact, GlaxoSmithKline was a big mover in getting that off the ground and that seems like a virtuous act by the company until you know that in a legal settlement they were ordered by the Attorney General in New York to publish all their trials. Cleverly, they made a virtue out of a necessity and they made themselves look like great corporate citizens and a big supporters of the All Trials initiative. So you need to be a bit skeptical about supposed positive acts by companies.

Who do the data belong to? Drug companies say they belong to them and talk about intellectual property. From our point of view, they belong to the participants who’ve made a sacrifice and a risk in participating in trials. Our obligation to them is to make the best possible use of the information that’s been generated in the interest of patients more generally. I think that patient interest trumps intellectual property considerations.

Moore: It was surprising to read how difficult it was for you to access data behind Study 329 and the Forest Laboratories citalopram study.

Jureidini: We’ve had a more recent episode where we’re just finishing off a reanalysis of a study called TADs, the Treatment of Adolescent Depression, which is probably the most influential trial of antidepressants in adolescents.

By the time we got on to Duke University, we were too late to get hold of the individual patient records and they had already been destroyed. But in existence, and very important, were the serious adverse event reports. There were 60 or so serious adverse events, and Duke still had the original reports that were filled out at the study sites by the people who were carrying out the study.

At high cost, they agreed to make them available to our team and we did some negotiation and got the cost down a little bit. We wrote a contract between our university and Duke University that would enable us to have access. Then, at the last minute, they said, “Actually, we’ve gone to our ethics committee and we can’t give you those documents because they can’t be sufficiently redacted to protect the identity of the patients.” This was clearly untrue because I had already provided the same documents to Columbia University in an earlier analysis of suicide and antidepressant trials.

What was equally interesting was that we went to our university and said, “Please support us in enforcing this contract that Duke has already entered into.” But our university wouldn’t do that. We got an American law firm to support us but again, our university wouldn’t let us pursue a legal means. Then when we wrote the whole thing up, our university wouldn’t let us publish any of the correspondence that we’d had with them about it.

One of the things that we do go on about in our book and in the opinion paper is the way in which academic institutions have sold out to industry more generally, and how concerning that is.

Moore: You said how difficult it was to access the data. When the regulators come to approve a drug, do they get to see the raw data from trials, or is that not part of how the approval is given?

Jureidini: This is not an area of expertise for me but my understanding is that the regulator is often quite accepting of what’s fed to them by industry. I’ve been involved in one case where the judgment by the FDA was in fact a cut and paste from documents submitted to them by industry.

There are famous cases of people in the FDA taking a proper interest in what is being presented to them. Unfortunately, they don’t seem to have been well supported by their agency when they’ve tried to do something about that. They have been treated very poorly and have to be whistleblowers rather than it being resolved within the agency. We know there’s a revolving door with people within the FDA working their careers towards senior positions within industry, and the FDA is funded by pharmaceutical licensing fees, so that relationship is far too close and blurry for patients to feel safe.

Moore: There’s this whole web of interlinked parts of the puzzle in terms of how industry does its influencing. Your book also says that political lobbying by the pharmaceutical industry is the single most important factor in the corruption of the regulatory system. It goes on to say the pharmaceutical industry is the largest lobby in Washington DC.

Jureidini: It’s interesting because in Australia, being a small jurisdiction, there are two or three psychiatrists who more or less own the public and political discourse. While their entanglement with industry is not huge, they’ve got to the stage where they get all the funding they want from government. Nevertheless, they experience significant career advancement through their engagement with industry and although both speak strongly to social determinants of mental health, they are always sticking up for pharmaceutical intervention.

With the recent publicity about the final putting to rest of the “chemical imbalance,” these key opinion leaders in Australia are wheeled out to say, “Well, yes we knew that all along, but that doesn’t mean that antidepressants aren’t great drugs for anybody who takes them.” So they’re not directly motivated by industry to do that, so you’ve got the voice of apparently well-intentioned, well-qualified public citizens and then you’ve got the direct lobbying. As you rightly pointed out, there are more pharmaceutical lobbyists in Washington than there are Congress members.

The political pressure is not just being applied from one direction, it’s coming from multiple directions. As Leeman pointed out in our book, it is a product and celebration of neoliberalism, and our health is not something that should be prone to that political and economic approach.

Moore: And dramatic creep in terms of identifying things to treat. I seem to remember it was one of the senior people in Merck saying that they wanted Merck products to be more like Wrigley’s chewing gum, something that people just have every day rather than to be seen solely as treating diseases.

Jureidini: Exactly, and that shapes the research agenda as well. Tropical diseases, for example, that kill and disable millions and millions of people get relatively little research from industry because if they do find a treatment it would most likely be something that people take for a couple of weeks and then stop. There’s not the same level of profit in it.

Moore: I’m sure you are aware that there’s been this issue about withdrawal effects from antidepressants and this idea that withdrawal problems are mild and self-limiting over a couple of weeks, We know that this came from the pharmaceutical industry. I was interested to read that the genesis for that might actually have been from a disagreement about the withdrawal effects of paroxetine being a short half-life drug and fluoxetine being a longer half-life drug. Two pharmaceutical companies essentially trying to out-argue each other as to which was the easiest to withdraw from.

Jureidini: Fluoxetine (Prozac) was the first to market and it was losing its market share to paroxetine (Paxil). Part of it was the more energizing effect of Paxil because it’s a shorter-acting drug and quite a nasty drug, but Lilly, the makers of fluoxetine, found a way of getting back at GlaxoSmithKline by saying, “Well your drug is going to have more withdrawal effects because ours is longer acting drug and won’t create the same problems.”

It’s a rare example of vigorous competition between companies though, because most of the time, what’s good for Glaxo is good for Lilly. If you promote fluoxetine, doctors aren’t necessarily going to prescribe fluoxetine. They just recognize that there’s not a lot of difference between different antidepressants. If Lilly is busily doing something that increases the sales of fluoxetine, they’ll also be increasing the market for paroxetine. Market size is probably a bigger issue for companies than market share.

Moore: You end the book with what you call a Radical Proposal and we’ve talked a little bit about that in terms of having trials independently assessed and the data taken out of industry. But, I wondered what else you felt there was anything more we could do to achieve intellectual honesty. I’m thinking of things like the Restoring Invisible and Abandoned Trials (RIAT) initiative that I know you’ve been involved with. Are there other things happening that might start to chip away at this monumental problem?

Jureidini: Yes, I think of the RIAT initiative. We’ve been involved with two of those and I think it’s a great initiative. Maybe half a dozen studies have been done, and one thing that you recognize is how incredibly time expensive it is to do this kind of work and how difficult it is to get it published.

It’s relatively easy for the company to get their shoddily reported study published in the first place, but you wouldn’t believe how hard it was for us to get our BMJ study on reanalyzing Study 329 published. We had 27 pages of reviews on the first submission. There were six months of to-ing and fro-ing between us and the BMJ and people were at each other’s throats.

It was an incredibly demanding, stressful process. In the end, the BMJ were very flattering about it and Fiona Godlee said it was one of the proudest moments of hers as the editor of the BMJ, but they didn’t make us feel like that. We felt like we were having to justify every full stop and capital letter, whereas the people who published the trial initially, albeit not in the BMJ, had just had ghostwriters prepare it. They’d present it to one journal and get rejected. Then present it to another one, do about half of what the reviewer’s asked them to do, and there it was in print.

Moore: At the end of the book, in the appendices, there are a number of letters presented that you or Leemon wrote to senior people in pharmaceutical companies or to journal editors. You get some sense there of how difficult a job this is. You must feel like you’re bashing your head against a brick wall most of the time.

Jureidini: I was at a conference in Sydney a while ago the title of which was “Truth Decay.” It was about the range of things affecting health where post-truth politics were having a negative impact. One of the presentations, by a lovely and very smart man, was about conspiracy theories in health. Interestingly, his chosen topic was people who criticize antidepressants. Here was an academic who thought that our criticism of antidepressants was actually manifesting a conspiracy theory rather than good science. So you can see that the odds are against us in trying to have an impact.

Moore: The book goes into some detail about ghostwriting and the ghost management of clinical trial reports. Could you share with us some of what you found about that during your research?

Jureidini: The most egregious example of ghostwriting and ghost management that I have come across was in the Forest citalopram study. Through legal action, there has been access to company documents.

One of them has a person from the ghostwriting agency writing to a person from marketing in Forest Pharmaceuticals saying, “It’s not clear yet who’s going to write this paper” (as opposed to who’s going to be the author). What they’re saying is they haven’t quite decided who in their team is going to prepare the manuscript, much less who they’re going to claim to have written the paper and who’s going to be listed as the author on the manuscript.

We see drafts of the manuscript prepared by the medical writing agency, as they call themselves and passed over to Forest marketing backwards and forwards. At a very advanced stage of development, out of courtesy more or less, the manuscript is sent to Karen Wagner, who’s the named first author, for her to make a few editorial comments before the medical writer then submits it to a journal. Then they choose a journal that would prefer a brief report so they can get away with not reporting some of the negative findings that would be required in a more extensive report of their paper.

Ghostwriting is a problem academically. It shouldn’t be the case that somebody claims scientific credit for writing a paper that they haven’t written. But from a patient’s point of view, that doesn’t really matter as long as the science is accurately represented. A patient doesn’t really care whether Karen Wagner really wrote that paper or not.

But what a patient does care about is whether the science is accurately represented. The bigger problem than ghostwriting is ghost management, where the whole process of what’s put into the paper and how the science is distorted is controlled by the company through their medical writing agencies. That does matter to patients because it means that false information or potentially fatal information is included in published articles.

Moore: There are some chilling examples in the book where you see the interface between the science and marketing messages and where the two don’t line up. There’s some real sleight of hand to finesse the wording such that, in some cases, goes as far as turning a negative result into a positive result.

Jureidini: Where it’s most dodgy is in the reporting of adverse events. The RIAT reanalysis that we’ve done has not turned out to be dramatically different in the efficacy findings. It’s the way it’s reported that’s the problem there, the spin that’s put on it. But what’s really bad is the way in which adverse events are hidden quite deliberately and cynically.

I think probably the most important thing in our Study 329 reanalysis that was published in the BMJ is a table where we describe 10 ways in which adverse events can be hidden or misrepresented in publications and they’re all incredibly common and used very widely.

Moore: Could you give us some examples of those? One that I do recall was clumping together adverse events to make them look as if they’re more general and not so serious.

Jureidini: If you’ve got some severe psychiatric adverse events you create a category called “neurological event” and you make psychiatric events a subsection of that, then you compare the overall figures. Headaches go into that category and they’re incredibly common, so the noise drowns out the signal.

Alternatively, if you’ve got a drug that has an activating effect that can cause nasty side effects like akathisia, you give different patients different labels. Then you say it’s got to occur 5% of the time or in 5% of patients to be reportable. So by dividing it up, you don’t reach the threshold of 5%.

Or you can rename something. In Study 329, they placed kids who had made suicide attempts under the category of “emotional lability.” Any clinician seeing the label of emotional lability would think, well, the drug made them laugh a bit outlandishly or cry a bit inappropriately, but no, that’s actually code for suicide attempts.

Moore: Study 329 is perhaps one of the more well-known examples of this, has it ever been retracted?

Jureidini: No. I mean, it’s quite amusing looking back on it now, though it wasn’t very amusing at the time. We wrote to the journal; when the journal editor changed we wrote to the new editor. We wrote to Brown University where the named author came from and we wrote to GlaxoSmithKline. We occasionally got replies, but no action.

Moore: So theoretically there are prescribers out there who could still look on that study as a basis for the safety and efficacy of prescribing that particular product and yet, it’s been comprehensively debunked.

Jureidini: Every few years we do a literature search on citations of that study. We found up until quite recently that up to 30 or 40% of the citations of it were either positive or at least uncritical. In fact, I think only a small minority were actually critical, citing it in a way that acknowledged its shortcomings.

Moore: Is there an answer to ghostwriting? I guess going back to your earlier suggestion of it if we could take the whole business of clinical trials out of industry and making independent, presumably that would also deal with issues of ghostwriting because it would then become about the science, not about the marketing message that is applied post-hoc to the science.

Jureidini: Exactly, and the closest I can get to that in advising young doctors is to tell them to only read the methods and results of the paper. In the original publication of Study 329, what was written in the methods and results about efficacy was accurate if you knew how to look at it, but what was written in the abstract and conclusions was entirely misleading.

Now, that didn’t provide any protection against the misleading nature of the way adverse events were reported but it did provide some protection against being led to draw incorrect conclusions as people were doing with that study.

Moore: It must be quite a challenge for prescribers to look at trials and read anything more than the abstract because they’re under so much time pressure. They probably don’t have the time or resources to go and look at the data analysis and the statistics. They’re probably just going by some very high-level messages and the abstract, aren’t they?

Jureidini: Yes, but it only becomes an issue if that paper is going to change your practice. There are a couple of ways in which you can protect yourself from making bad decisions about prescribing drugs that have been misrepresented.

The first is to favor old drugs over new drugs because if a drug has been around for a long time, it’s likely that any adverse effects of it have become more apparent. If it’s survived, that’s probably a good thing. The second thing is to restrict yourself to one or two drugs from any class and get to know those drugs well and only be motivated to change those drugs if you’ve got strong grounds to think that there’s a dramatic benefit to be gained from a new drug.

There are drug bulletins around that doctors can use that provide a kind of screening for that. Prescrire, the French drug bulletin, will tell you if a new drug that comes on the market is worthy of consideration.

Then if you are thinking of using a new drug or treatment, you do need to spend a lot of time looking in detail at the data. You can’t rely on guidelines, and my advice is to form a critical appraisal group, kind of like a journal club, but to find somebody who can mentor a group of physicians in strongly critically appraising literature. But you don’t have to do it very often, because new drugs or new treatments that are going to change your practice don’t actually come along that often.

It looks like they do because new drugs come onto the market but most of them are “Me-too” drugs like all of the antidepressants that came along after fluoxetine and don’t require your attention.

One more thing is about surrogate measures. The idea is that a lot of misleading information comes from placing too much credence on things like changes in blood pressure or lipid levels or, in the case of psychiatry, symptom measures, without looking at mortality or hospitalization or even quality of life measures that measure more substantial outcomes.

The hierarchy of evidence in the conventional pursuit of evidence-based medicine is based on the methodology that’s been used to gather the data. You have a meta-analysis at the top and then a big randomized controlled trial and then cohort studies and then single case studies. What that doesn’t take into account is the importance of what’s being measured, so that hierarchy needs to be respected as well.

Vioxx is probably the best example of something that, at the level of symptomatic improvement, looks like a really good drug but once you started to measure important outcomes like hospitalization and mortality, we discovered that it was a really bad drug.

There’s a long list of drugs that have looked really good when they’ve first been developed because all that has been measured are the surrogates. Once the more important measures like hospitalization and mortality have been investigated, it turns out this drug does more harm than good.

Moore: And as you said earlier, it might be decades before there’s enough data available on the effects of that drug in the clinical setting.

Jureidini: Yes, but with Vioxx, it was years rather than decades. If people had stuck with the old drug for just a while, it would have been long enough for them to avoid the new drugs. It’s great to be an early adopter if you’re buying a new computer or something like that, but it’s not a good idea to be an early adopter with medical treatments.

Moore: Jon, thank you so much for spending some time with me today to talk about your book. It’s very accessible but very sobering reading. It makes clear how evidence-based medicine has been corrupted by corporate interests, failed regulation and the commercialization of academia.

I hope that initiatives like Restoring Invisible and Abandoned Trials and the setting up of journals free from industry influence help to restore some balance.

I can’t imagine how difficult it is to set yourselves up in opposition to people in some of the most profitable businesses on earth who seem to have an endless supply of money to invest in marketing, legal protection and in influencing and all the rest of it. I think it’s an incredibly brave thing to do, so thank you for your work, Jon.

Jureidini: Thank you very much for having me.

The post Jon Jureidini–Evidence-Based Medicine in a Post-Truth World appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/09/jon-jureidini-evidence-based-medicine-post-truth-world/feed/ 22 https://www.madinamerica.com/2022/08/beverley-thomson-antidepressed-antidepressant-harm-and-dependence/ https://www.madinamerica.com/2022/08/beverley-thomson-antidepressed-antidepressant-harm-and-dependence/#comments Wed, 17 Aug 2022 10:01:45 +0000 https://www.madinamerica.com/?p=236411 We talk with author Beverley Thomson about her latest book, entitled Antidepressed: A Breakthrough Examination of Epidemic Antidepressant Harm and Dependence.

The post Beverley Thomson–Antidepressed: Antidepressant Harm and Dependence appeared first on Mad In America.

]]> Our guest today is Beverley Thomson. Beverley is a writer, researcher and speaker with a focus on psychiatric medication including antidepressants, benzodiazepines and ADHD drugs. She is interested in their history, how the drugs work, adverse effects, dependence, withdrawal and development of patient support services.

For the past 10 years, she has worked with organizations such as the British Medical Association, the Scottish Government and recently the UK All Party Parliamentary Group (APPPG) for prescribed drug dependence. She is currently part of a Scottish Government Short Life Working Group addressing the issue of prescribed drug harm and dependence in Scotland.

We talk about Beverley’s latest book, entitled Antidepressed: A Breakthrough Examination of Epidemic Antidepressant Harm and Dependence published by Hatherleigh Press in 2022. Featuring compelling accounts from people whose lives have been irrevocably harmed by prescribed antidepressants, Beverley’s work provides proof that there is no such thing as a magic pill and that pretending otherwise risks the lives and well-being of those who need help the most.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Beverley, welcome, thank you so much for taking the time to join me for the Mad in America podcast. We are shortly going to be talking about your new book, Antidepressed: A Breakthrough Examination of Epidemic Antidepressant Harm and Dependence, recently published by Hatherleigh Press. 

But before we get there, I’d like to ask about you and your background and what was it that led you to want to write Antidepressed?

Beverley Thomson: Thank you so much for inviting me to talk with you, James. My initial interest began around 12 years ago when I was working in a counselling role in primary and secondary schools. I noticed the language being used by both teachers and parents was changing and rather than asking what was happening with or to a child we were starting to ask what was wrong with a child.

We were starting to hear “I think there is something wrong with him or her” or “I think he or she has ADHD” when talking about children who were obviously having difficulty coping with school or family life or what were often complex social issues.  I suppose the first question I had was; why are we starting to blame children for their understandable difficulties coping with what are often very challenging circumstances?

This then led me to begin to read about the issues and attend conferences. I spoke with individuals about the labelling and medicating of both adults and children for so-called “mental health issues.” I soon realised this was becoming a huge issue and I developed an interest in all aspects of psychiatric drugs, particularly antidepressants, and how they were negatively affecting people.

The more patient experiences I read and listened to, the more I knew that patient voices needed to be heard. In the last few years, I realised there was a need for a book about antidepressants written in an accessible style which contains all the important work done to date by researchers, academics and advocates. My aim was to write a book to enable us to become “informed consumers” of antidepressants. I wanted to create a comprehensive book which was not written in medical or academic language. I want Antidepressed to empower us and educate us to see ourselves as “consumers” of these drugs rather than patients with little or no autonomy.

Someone once said to me that when you realise something is wrong you have a responsibility to tell others. I realised very early when I started my research that there are many things very wrong when it comes to antidepressants and other psychiatric drugs.

Moore: The book starts with a powerful letter from Anthony Schofield, who tragically ended his life at 52 years old. It is clear from his letter where he placed the blame for his agony and that was from taking and coming off prescribed antidepressants. I imagine that this tragedy is not an isolated event, so this is a very important book isn’t it?

Thomson: Like so many people, Anthony’s life was ruined by both overprescribing and the lack of support when he found himself suffering the adverse effects of and dependence on antidepressants. His issues began at a time when there was very little information available about the negative effects of antidepressants and there were no online support groups to help. He believed his situation was down to a lack of professional awareness and their failure to acknowledge these drugs could cause such life-changing psychological and physical harm. It was only towards the end of his life Anthony realised the antidepressants were to blame, but unfortunately it was too late.

For two years after Anthony’s death, I spoke with his mum, Bridget, two or three times a week and we became good friends. She had been seriously ill for over a year but was desperate to see my book published and she did, just before she passed away in February this year. I lost a best friend.

One of the last things Anthony asked his mum to do was to “tell the world about antidepressants” and I hope Antidepressed will be their voice. Antidepressed is not a book about politics or big pharma-bashing but it is about enabling us to be the informed patient Anthony had the right to be and his mum became even in her eighties. For Anthony and Bridget, I hope Antidepressed will prevent more tragedies and wasted lives.

Moore: Can we turn firstly to rates of prescribing? As you note in the book, we are seeing unprecedented increases in the prescribing of antidepressants in many parts of the world. Is this simply down to more people experiencing mental health problems or is there more to it than that?

Thomson: Despite the unprecedented increases in prescribing, there has never been any evidence of the “epidemic of depression” talked about. We do however have a mental health pseudo-epidemic in the Western World. The increase in antidepressant prescribing is a cultural as well as a medical trend and reflects the “medicalization” of everyday life.

The constant mental health messages we hear nowadays seem to be a media and political obsession. These messages have ultimately led to the increase in antidepressant prescribing as we are told to get help but for the majority of those who do, help will be medication. Governments and industry have capitalized on the fact that we believe and accept that antidepressants are a safe and effective answer to our problems.

We are told our mental health deserves parity with our physical health, but are these messages being strategically used by those in power to avoid responsibility?

The pharmaceutical industry, psychiatry and doctors are supported by governments and mental health organisations and charities to promote “mental health,” meaning it has become a massive industry. I guess the question is, are we enabling or allowing governments to fail to acknowledge and address the social determinants affecting our lives which are making us unhappy or anxious? Are we allowing them to make us believe it is all our fault and not theirs, and it is down to us to solve our problems by taking a pill?

We are told our mental health deserves parity with our physical health but we live with poverty, homelessness, unemployment, loneliness and many other societal factors causing our distress. Despite this, we are told it is about our “mental health” and “we” need to fix it. Our social problems have become medical ones and antidepressants make life easier for those in charge but unfortunately, as prescribing rates soar and markets are expanded, we are seeing more and more suffering caused by the adverse, often life-changing effects of these powerful psychoactive antidepressants.

I suppose there’s another side too, our growing power as consumers doesn’t seem relevant when it comes to the ever-increasing prescribing of psychiatric drugs. Whilst we have the means to ask questions through the use of the internet and social media, most of us still accept that the drugs we are prescribed are beneficial and will do us no harm.

We live in the age of the consumer and it’s a time when we have access to so much information about products and we can be empowered about the decisions we make. In most commercial areas, the balance of influence and power has shifted from the manufacturer to the consumer. In fact, in many areas of healthcare, the rise of healthcare consumerism and increased access to healthcare information have improved the choice for patients.

I started to ask myself why this hasn’t happened with antidepressants and other mental health drugs. Why do people accept that “the doctor still knows best” when it comes to our mental health treatment? Why have we not felt the need to inform ourselves about what are powerful and often life-changing drugs?

I suppose the answer is that pharmaceutical manufacturers’ marketing departments have not had to adjust their messaging and marketing strategies to meet the needs of a more informed consumer when it comes to antidepressants. The messages are very similar to the early 1990s; we have a chemical imbalance that needs to be corrected.

Normally, the modern consumer has often researched products they intend to buy beforehand, this means that the deliverer of services should have to be more informed about the product and more knowledgeable in their dealings with customers to ensure customer satisfaction. This hasn’t happened with psychiatric drugs; prescribers have not had to become more knowledgeable about the most up-to-date research.

Prescribing rates are increasing because we have allowed the mental health medical model of treatment to dominate without much questioning. I am hoping that the recent umbrella review by University College London researchers will mean that more people will begin to question the “chemical imbalance” and people will become more knowledgeable, meaning that prescribers also need to become more knowledgeable.

Moore: You have a section in the book which dispels myths and you ask “Who is looking after patient interests?” What did you find when you asked this question?

Thomson: Since 1988 and the birth of Prozac, we have been brainwashed by the powerful marketing messages of the pharmaceutical industry. In the 1990s, national campaigns informed doctors and the public of the dangers of depression and that antidepressants are the easy “quick fix” answer. We were convinced by the pharmaceutical industry and doctors that depression was a biological disease. That chemical imbalances needed balancing and all our life problems could be cured by a drug. This hasn’t had to change because not enough people question it.

But if we see our inability to cope with life as an illness or condition, the drug regulators and pharmaceutical industry see us as customers. What most people don’t realise is the FDA (Food and Drug Administration) in the US and MHRA (Medicines and Healthcare products Regulatory Agency) in the UK receive significant funding from the pharmaceutical industry and they employ ex-industry professionals in key leadership positions. The FDA is accused of not putting the American people first with their huge financial ties with pharma. The MHRA has been accused of corruption and they admit the costs they incur for regulating medicines are entirely met by fees from pharma.

These conflicts of interest are said to lead to lenient regulations placing the interests of pharma above patient protection. Most people are surprised to learn the FDA and MHRA require only two positive trials to approve a psychiatric drug for public use and they simply ignore all the negative trials. They have a history of manipulating research to highlight positive outcomes. The majority of psychiatric drug trials are of course conducted and commissioned by the pharmaceutical industry.

In March 2019, the FDA gave very quick approval and quite a bit of flexibility for the antidepressant esketamine, marketed as Spravato. This is based on ketamine which can have psychedelic and cognitive adverse effects. It is worrying that the FDA lowered the bar and approved such antidepressants, which it is said have “incredibly questionable safety and efficacy.” We have to ask ourselves “is the FDA putting patients at risk and not putting the American people first”?

Moore: Antidepressants are known to have a range of adverse effects. Amongst the more serious effects can be the risk of suicidal thought or action, sometimes precipitated by unbearable experiences like akathisia. What do we know about the relationship between antidepressant treatment and the risk of suicide?

Thomson: Unfortunately we choose to take antidepressants because the benefits have been widely promoted and the risks downplayed. There are common experiences, but everyone has a unique response to antidepressants and no one can predict how a person will react to them physically and psychologically.

Doctors rarely warn us about adverse effects when we are first prescribed antidepressants. A doctor should always give us comprehensive information when prescribing antidepressants enabling us to give fully informed consent. Informed consent means we understand why the treatment is being offered and are aware of the benefits and risks. It is our medical right, this happens in all other areas of medicine. The “chemical imbalance” theory has been an excellent way for prescribers to manufacture consent. By that I mean believing in the “chemical imbalance” theory means we think we know enough about these drugs and what they supposedly do to agree to take them and think we need them.

A Patient Information Leaflet (PIL) for an SSRI drug contains around 200 side effects; 50 they say are common and 140 uncommon. These are not “side” effects, they are adverse effects. The problem is that patient experiences of adverse effects paint a very different picture to the ones portrayed by the pharmaceutical industry and medical profession. It is alarming that dependence is listed as a “rare” side effect.

From anecdotal evidence we know the more serious risks can include varied and unpredictable physical and mental states, feeling emotionally numb, feeling detached, having distorted dreams, becoming agitated and becoming suicidal. People can have serious central nervous system problems and there are complex neurological effects including chronic brain impairment.

I call akathisia the “A word” of antidepressant adverse effects. It is a medication-induced state which can happen when patients start, stop, change dose or switch generics of some prescription medications including antidepressants. We also know that between 5 and 10% of people have difficulty metabolizing antidepressants and this can cause akathisia when starting the medication.

People call akathisia the epitome of losing their mind. It can cause an inner turmoil, uncontrollable physical restlessness, agitation and paranoia. I have a lot of information in my book about akathisia, provided by the Akathisia Alliance for Education and Research and the Medication-induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD).

It can cause suicide either because, like Anthony, we become unable to cope with the intolerable physical and psychological effects of akathisia, or our mind becomes so unbalanced and detached from reality, we literally have no option but to give in and act on our thoughts of suicide. Akathisia can be confused with psychosis and we need more research to understand how often akathisia is reported as first-episode psychosis.

The question we have to ask is, “If antidepressants are safe, why do they have a US FDA black box warning regarding safety and efficacy and the risk of suicidality in young adults?” There appears to be an alarming link between rising suicide rates and antidepressant prescribing. The use of antidepressants by people under 25 with depression is associated with double the risk of suicidal thoughts and behaviours. All suicide prevention strategies need to include awareness of prescription drug-induced suicide but unfortunately, this isn’t happening.

Moore: Can we talk a little about medically unexplained symptoms (MUS) and how they might relate to withdrawal effects from antidepressant drugs?

Thomson: Doctors often fail to recognise or believe physical or psychological symptoms are the adverse effects of antidepressants and they look for alternative explanations. This can result in examinations, tests and investigations which will result in negative results. Doctors will then label a patient’s adverse effects as medically unexplained, somatic or functional symptoms meaning that they are of unknown etiology or the cause is unknown.

These can then lead to diagnoses such as Chronic Fatigue Syndrome, fibromyalgia, ME or IBS. This is becoming a fast-growing area of research as professionals and drug companies capitalize on the opportunities the adverse effects of antidepressants present. I call it opportunistic medicine.

It is estimated that 1 in 4 people who visit a General Practitioner in the UK have “MUS” and 1 in 3 who see a neurologist. Doctors become very frustrated with patients who see them with functional or somatic symptoms. These are becoming a growing burden on health resources and the patient is often being blamed and further medicated. Ultimately, it leads to more labelling, more drugging and more illness.

Moore: I’d like to ask you about generic drugs. Listeners might know that many antidepressants are no longer under patent by the original manufacturer, so they can be made more cheaply under licence elsewhere. Many might think that easier access to these drugs is a positive thing but there is a hidden side to the manufacture of generics, could you tell us about that?

Thomson: Once a brand-name drug’s patent expires, a generic drug can be produced. Manufacturers submit an ANDA (Abbreviated New Drug Application) to the FDA or MHRA for approval to market a generic version of the drug. For example, generic sertraline could be made in June 2006 when the patent for the brand name Zoloft expired. Generic drugs cost between 20% and 90% less than the branded version.

The problem is that we are told these drugs are the same but they are only approved on similarity, there are no clinical trials and they are not identical. Generic manufacturers do not actually see the brand drug registration file. That is the exact recipe of how the branded drug was made, so generic manufacturers develop their own formulation. The quality of manufacturing is raising serious concern. Each time we might be receiving a different make of generic with a different level of quality or bioequivalence.

The other major issue is the production of active ingredients in China which are being used by manufacturers without declaring the origin. So all drugs have an API (Active Pharmaceutical Ingredient) and the quality of the antidepressant is based on the quality of the API.

We often hear they don’t work as well but it can be more serious than that when it comes to psychotropic medication. If we are receiving generics with a different bioequivalence (for example 80% or 110%) this might cause adverse effects and it might even lead to involuntary withdrawal. I have even had reports of akathisia and suicide due to taking a different generic. We might be taking higher or lower doses each time we switch manufacturers. It might also cause real problems during tapering when maintaining accurate dosage is crucial.

If we are given a drug from a different manufacturer and we develop adverse symptoms, we need to assume it’s the drug’s fault. We need to make a note of the manufacturer and inform our prescriber.

Moore: The latter part of the book features testimonies from people affected by dependence and withdrawal and it is heart-wrenching to read of the suffering. I understand that many of these testimonies supported a plea to the Scottish Government to do more to tackle these issues. What was their response?

I was part of a short-life working group which was set up to address the issue but it has been ineffective. Now, four years on, Marion Brown, who launched the petition asking the Scottish Government to recognise and support those harmed by or dependent on prescribed medication, has just received the final report. In total, 967,220 people were prescribed antidepressants in Scotland in the period 2019-2020.

I was on Scotland Tonight last week, a news and culture programme on Scottish Television, and I was talking about the alarming rates of antidepressant prescribing in Scotland, particularly amongst the young. These alarming rates of prescribing to young people in 2019-2020 probably tell you the lack of response from the Scottish Government.

A total of 20,825 young people up to the age of 19 were prescribed antidepressants in Scotland in 2019-2020. This was an increase of almost 80% in 10 years. Current guidelines state young people should only be offered antidepressants in combination with talking therapies and, on this TV programme, a leading psychiatrist said “these guidelines are followed, young people are not prescribed antidepressants as the first option of treatment and are given frequent monitoring and review.”

We know from anecdotal evidence this is far from what is happening and we need to question the alarming link between antidepressants and suicide and self-harm amongst young people.

Moore: It is difficult to read the book without concluding that the best thing would be to treat as few people as possible with the lowest dosage of any particular antidepressant for the shortest possible time, taking care to taper at the end of a short treatment period. Yet this isn’t the approach we take. It seems that there is an increasing number of people taking the drugs long-term, why might long-term use be a problem?

Thomson: Many people say antidepressants saved their lives and they could not survive without them and, for many, this has become a self-fulfilling prophecy. Missing one dose might be the first sign of our dependence when we might experience dizziness, brain zaps and sickness. No one knows how long it takes to become dependent on antidepressants but anecdotal evidence tells us for some it is not very long. This is one of the main reasons we should take antidepressants for the shortest time possible.

It is perhaps dependence that makes it difficult to withdraw from antidepressants. Our level of dependence might dictate the severity of our withdrawal symptoms. If we try to stop and we experience withdrawal symptoms, many people remain blissfully ignorant dependents because they think or are told they have a relapse and that they need the drugs. Millions of people are unaware of the problems dependence might cause them.

Taking antidepressants long-term and the resulting dependence makes us vulnerable in so many ways. Imagine that you are dependent on antidepressants and you can’t get them, can’t access them or communicate your need for them. Your new antidepressant-maintained balanced state will probably become unbalanced and you will probably go into involuntary withdrawal. Having access to the drugs we need can literally in some cases be the difference between life and death. We are vulnerable if we are not properly informed about our drugs and if we receive bad advice from doctors.

The elderly can become vulnerable if they have no support and are unable to make decisions or communicate properly their need for medication. A young person can be vulnerable when they move away from the security of home and family particularly if they are not educated about the dangers of suddenly stopping their antidepressants and of their potential dependence.

We are vulnerable If we are not able to afford our long-term medication. It’s estimated that between 2.5 and 5 million in the US are struggling to afford the psychiatric medications they rely on. We are vulnerable when there are drug shortages and when changes in cheap generic drugs cause adverse effects.

I think we need to start with education for patients and the medical profession. We need greater transparency and access to unbiased research. Everyone has a right to take antidepressants but they also have a right to know the potential harms and risks. The problem is that with millions around the world dependent on these drugs, it is impossible and impracticable to have a world without them in the near future.

We are told by governments and health care organisations that we should take charge of our health by being informed consumers and I hope in the future people will have a better understanding of antidepressants and they will ask their prescriber more specific questions about their treatment.  Ultimately, better-informed consumers mean we will need to have better-informed professionals.

Many people are becoming better informed and asking if these drugs are safe, effective and worth having but most people still believe we live in an age of “the doctor knows best” when the reality is, much of the time “the doctor simply does as he or she is told.”

In lots of areas of mental health, we talk about the need for a change of narrative. The most popular being asking “What happened to you?” rather than “What is wrong with you?” but maybe we should also think in ways of changing how we see ourselves. Yes, we are doctors and patients who prescribe and take drugs but we must always remember it is about selling and consuming.

I have a quote from my book which explains how I see the future in relation to the use of antidepressants.

Whilst Governments around the world debate, medics remain wilfully blind and charities secure their funding, the change has to start with us, as individuals, as advocates and as informed patients. The fact that we know a doctor’s appointment is often the start of a lifelong journey as a psychiatric patient with a stigmatising lifelong condition and dependence on psychiatric medication means the shift starts with us questioning the overuse of antidepressants and looking at alternative ways to support and care for each other. It starts by becoming more knowledgeable, reclaiming some control and power over our own healthcare and by taking responsibility to educate ourselves to the best of our ability. It starts by understanding antidepressants are not the easy and quick fix their makers and doctors say they are.

Moore: Do we need to critically examine and change the place of psychotropic drugs in our response to mental health difficulties do you think?

Thomson: There are some things we desperately need if we are to avoid overprescribing, harm and death caused by antidepressants. We need to be in a position where we can give informed consent about these drugs. Not the manufactured consent that I described earlier. If we agree to take antidepressants, we need to be fully informed about the benefits and the risks.

We need updated prescribing guidelines based on evidence and that means we need more research which is independent and not industry-funded. If we choose to take antidepressants, we need to take them for the shortest time possible to try to avoid dependence.

If we develop symptoms after starting, reducing or stopping antidepressants we must always assume it’s the drug’s fault until proven otherwise. We desperately need more unbiased research, particularly regarding long-term effects and the best ways to withdraw from antidepressants.

We need to look at pharma producing drugs in smaller doses and making use of tapering strips which you have supported through a petition, James. We need education for the public and professionals, particularly about withdrawal, akathisia and antidepressant-induced suicide.

We urgently need support services for those harmed or dependent, and we must develop withdrawal and deprescribing programmes. It was really unfortunate that the UK Government recently decided not to fund a helpline that would have helped so many people when it comes to coming off antidepressants.

We need to question the often unnecessary and dangerous prescribing to children, young people, the elderly and the armed forces and veterans. We must also question the potential harmful effects of using cheap generic antidepressants because this is a huge issue.

I do not say that people shouldn’t take antidepressant drugs, I say that we need to know about the benefits and the risks. So many people have said to me “I should have known these things” when they realise they are dependent on antidepressants. I know so many people who wished they had been fully aware, before they swallowed their first pill, of the realities of a life taking antidepressants. I urge people to challenge our preconceived societal ideas and beliefs about antidepressants. We should educate ourselves to the best of our ability and learn from the experiences of others.

Moore: Beverley, thank you for joining me today. Antidepressed is a vital read for anyone taking the drugs, anyone considering taking them, for family members and for carers and particularly important for anyone that has anything to do with prescribing the drugs.

I can’t help thinking that if they read Antidepressed from cover to cover, we would be prescribing these drugs in a radically different way and we would be taking much more care to ensure that people weren’t left on the drugs long-term without information or support.

Thomson: Thank you, James.

The post Beverley Thomson–Antidepressed: Antidepressant Harm and Dependence appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/08/beverley-thomson-antidepressed-antidepressant-harm-and-dependence/feed/ 5 https://www.madinamerica.com/2022/08/read-masson-biological-psychiatry-mass-murder-schizophrenics/ https://www.madinamerica.com/2022/08/read-masson-biological-psychiatry-mass-murder-schizophrenics/#comments Wed, 10 Aug 2022 10:01:08 +0000 https://www.madinamerica.com/?p=236050 On the Mad in America podcast this week, we hear from the co-authors of a paper published in the journal Ethical Human Psychology and Psychiatry which documents the mass murder of a quarter of a million people, mostly diagnosed as “schizophrenic” in Europe during the Second World War. Later, we hear from Dr. Jeffrey Masson, who […]

The post John Read and Jeffrey Masson – Biological Psychiatry and the Mass Murder of “Schizophrenics” appeared first on Mad In America.

]]> On the Mad in America podcast this week, we hear from the co-authors of a paper published in the journal Ethical Human Psychology and Psychiatry which documents the mass murder of a quarter of a million people, mostly diagnosed as “schizophrenic” in Europe during the Second World War.

Later, we hear from Dr. Jeffrey Masson, who is an author and a scholar of Sanskrit and psychoanalysis. But first, we talk with professor of psychology John Read. Regular visitors to Mad in America will know of John’s work. For those that don’t know, John worked for nearly 20 years as a clinical psychologist and manager of mental health services in the UK and the USA, before joining the University of Auckland, New Zealand, in 1994, where he worked until 2013. He has served as director of the clinical psychology professional graduate programmes at both Auckland and, more recently, the University of Liverpool. He currently works in the School of Psychology at the University of East London.

John has many research interests, including critical appraisals of the use of psychiatric drugs and electroconvulsive therapy.

We discussed how John and Jeffrey came to write a paper which examines a grim period in psychiatric history.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

 

James Moore: We are here to discuss your paper, published in the journal Ethical Human Psychology and Psychiatry. The paper is entitled “Biological Psychiatry and the Mass Murder of ‘Schizophrenics’: from Denial to Inspirational Alternative.” You wrote this paper with a co-author, Jeffrey Masson, who we will also hear from.

The paper documents the murder by psychiatrists of a quarter of a million patients mostly diagnosed as “schizophrenic” in Europe during the Second World War and the sterilization of hundreds of thousands more internationally, including in the USA and Scandinavia. How did this paper come to be written and how did you and Jeffrey contribute to it?

John Read: The first thing to acknowledge is that I would describe Jeffrey Masson as a Holocaust scholar. He knows far more about the Holocaust, including this particular part of it, than I do. He happened to be living in New Zealand and we became good friends.

The current article is an update of a book chapter we wrote together back in 2013. I’m reasonably well read about the history of psychiatry but I didn’t know half of what Jeff was telling me and I thought “this has to get out there somehow.” So we did a book chapter about it, but, as you know, book chapters are not particularly well read. So I wanted to try and get it out in a more accessible and up-to-date form, hence this article.

 

I think it’s timely, inasmuch as it is beginning to feel like the monolithic medical model promoted by the drug companies and biological psychiatry is now finally beginning to crumble. We’ve got the World Health Organization writing long reports about it, we’ve got the United Nations Special Rapporteur completely condemning the overemphasis on biology and compulsion and so forth. And just this week, an astonishing and historic paper by Joanna Moncrief, Mark Horowitz, and others, documenting that there is no evidence for a “chemical imbalance” behind depression, a theory which provided the basis on which millions of antidepressants have been prescribed for the last 20 or 30 years.

So things are changing and the task for us all is to accelerate that change. I think it’s useful to remind people of the extremes, and it is an extreme, to which a biological explanation for human distress can take us if we’re not careful. I will talk later about some of the ways in which there are parallels between what happened all those years ago and what’s happening today, including the continuing use of force and compulsion and just how strong the genetic theories are today, still dominating our thinking and our mental health services.

That’s the motivation for it. But it was also important to put in an alternative rather than to leave everybody just with doom and gloom. An alternative also run by psychiatrists. The alternative, as we’ll see, is about how people returning to Israel were treated by the Israeli psychiatric system.

Moore: Before we talk about the content of the paper, I just wondered what your thoughts were on why we need to know about the history of psychiatry. Is it relevant today?

Read: Well, it’s a cliché isn’t it, that we should learn from history and not make the same mistakes. However, I’m not for a second saying that psychiatrists are killing people today in the same way that they were. I think murder is the right word, they used the word euthanasia and getting rid of life “devoid of value” and so forth, but it was murder. I’m not saying people are doing that today, but people are still dying in the psychiatric system.

There are parallels: an unevidenced genetic ideology is still dominant and the effects of that are manifold. Apart from anything else, it creates this pessimism that there is something wrong with your genes. What is the point of trying to improve your life or do anything differently if the message is that you are flawed? Just as with the chemical imbalance theory, which fortunately now is disproved, there isn’t any evidence for a genetic basis for “schizophrenia” or for that matter depression or anything else in the psychiatric repertoire.

It’s important to link these things up and to show that there’s a long tradition that goes back hundreds of years of harming people who are different in the name of helping them or in the name of doing something good for them. Even those horrific murders were framed as helping people rid themselves of life devoid of value. It was framed as it’s good for them and society because they were a drain on society. Just as it was considered valuable for witches to be burnt because that redeems their souls and they could go to heaven.

Within attempts to help people who are different there’s always been, historically, a streak of harm and violence and undervaluing of those people’s lives which somehow then allows or justifies the harm. I think some of that is still going on today.

Moore: Turning to the paper, could tell us a little bit about the content, perhaps what you found and some of the things that surprised you when you were working on this with Jeff?

Read: I guess what surprised me was the sheer number of deaths. A quarter million people were killed in Europe by psychiatrists and their assistants in psychiatric hospitals. It started with children, I didn’t know that. There were relatively small numbers but that’s where it started, with starving and other methods to kill initially about 10,000 children. Then in 1938, they moved on to adults.

In part it was the size, but also the rationale for it that was important because eugenics was a wide movement way beyond psychiatry. Some very famous psychologists were involved in the eugenics movement, including Burt and Spearman and Cattell and other huge names. So it’s not unique to psychiatry but psychiatry had the means or the power to act on it.

And the rationale started, in some ways, in a 1920 book written by Ernst Rudin, professor of psychiatry, about life devoid of value and introducing legislation into Germany that made it possible to sterilize people. This was a precursor to the killings. And again, that was not unique to Germany. The first sterilization law was passed in Indiana and by the time of the Second World War, there were 20 states in the United States with sterilization laws. Scandinavia was also quite a leading area in terms of compulsory sterilization, often but not always for insanity and often targeted more at women than men.

Eugenics was a wide movement and sterilization was the first example of it targeted not just at so-called mentally ill people but people with any sort of deformity or disability. The linking rationale was that these people had genetic problems and so it was an attempt, as we all know what eugenics means, to purify the race. With good intent, we have to assume most of the time until we get to Nazi Germany.

So it was an attempt to get rid of these disabilities and illnesses. Alcoholism was in there as well, that was considered to be genetic and we can get rid of it and we can sterilize alcoholics and so forth. Moving on to the murders from 1938 onwards, they started at six psychiatric hospitals throughout Germany and, by the end of the war, about a quarter of a million people had been killed. Most of the people with a diagnosis of schizophrenia had been killed by the end of the war.

One of the lessons, and this is never spoken about, is that this is perhaps the largest experiment that tests whether or not schizophrenia is a genetically-based phenomenon because they killed the vast majority. So if it was a genetically-based phenomenon then in the next generation there would be very low numbers, if any. But the numbers didn’t change at all, which shows that schizophrenia, like all other mental health problems, is almost entirely psycho-socially based and nothing to do with genetics. Nobody talks about that, this genetic theory just carries on regardless.

There are many details in the paper and I don’t think it’s worth going through all of them, but the extent to which the psychiatrists were involved is important. The chairs of 10 psychiatry departments were in charge of selecting who died. So it wasn’t some sort of peripheral involvement, they were central to it. They planned it, they decided who died, and, in many cases, they carried out the killings themselves, but obviously with those numbers they had assistance.

One of the many things I didn’t know was that when it came time to start the killing of six million Jews, the instruments that had been used in the psychiatric hospitals and the psychiatrists themselves were then shipped to Treblinka and other places. One of them became a commandant of one of the Holocaust camps. So, the rationale and tools and the personnel for the Holocaust came from psychiatry.

Obviously psychiatrists today are not responsible for any of that. But they ought to talk about it now and again. They ought to acknowledge it, they ought to realize that there are risks involved in having simplistic unsubstantiated views of where human distress and differences come from and learn from that, and they haven’t.

Moore: In the paper, it says that about half of German physicians belonged to the Nazi Party, with psychiatrists being the most heavily involved, but amazingly, only a handful of psychiatrists refused to participate in the killings.

Read: If we go back to that time, we can’t really grasp the extent of the social and peer pressure and maybe even threats if they didn’t comply. But the history books tell us that only one psychiatrist was ever executed for refusing. Some did refuse and we name a very small number of people who refused to cooperate to note their bravery and it probably was a brave thing to do. It’s easy to condemn from this point in history looking back but when all your other fellow doctors are doing the same thing, the pressure to comply is huge. That’s not an excuse, it’s a possible partial explanation, I suppose.

Moore: How has psychiatry responded since? These things are obviously a matter of public record and you were able to find the details along with Jeff of what had happened. So what has psychiatry’s reaction been since those awful occurrences?

Read: For many years there was almost total denial. That’s exemplified by history books throughout the ’60s, ’70s, and ’80s saying nothing about it. We found one, The World History of Psychiatry, edited by Howells. It had a chapter on each of 30 countries and every chapter went up to 1980 or so but the history of Germany stopped in 1939—it just stopped as if nothing happened.

In the modern history books of psychiatry, there’s either no mention of it at all or, even worse, there’s mention of some of the professors involved and their research as the forefathers of psychiatric genetics (which they were) but with no mention of their involvement in these killings, which is bizarre. In Germany, of the first 12 presidents of the German Psychiatric Association after the war, three of them were centrally involved in the killings. Many of the psychiatrists just carried on working with very little censure—one of the leading architects was fined 500 marks.

One of the leading people, Franz Kallman, went over to America and wrote for two decades about the genetic basis to schizophrenia and homosexuality. He advocated that not only schizophrenics should be compulsively sterilized, but all their relatives should be too and this was readily published in scientific journals in America and around the world.

There’s just massive denial which has, to some extent, gone on to this day. You can still read psychiatric history books that either have nothing about this or cite the architects as important contributors to our understanding of schizophrenia. We have a journal called the History of Psychiatry which hardly publishes anything on this topic. It declined our paper because it doesn’t fit with the remit of the journal. It was explained to me when the paper was rejected that “biological psychiatry didn’t start until the 1980s.”

It’s fairly universal denial and possibly understandable. I don’t know what the right word is, embarrassing, shameful. None of us like to talk about shameful things in our past. I must stress that this is not about holding current psychiatrists to account, it’s not their fault. But the leaders of psychiatry should be teaching their students about how things can go wrong if you place too much emphasis on wrong theories.

Moore: The paper is both fascinating and challenging to read but perhaps the most important part is you talking about what you call an inspirational alternative. So I wondered if you could share with us what that inspirational alternative was?

Read: I found this fascinating and I stumbled onto it completely by chance. There was a film made about what happened to a certain group of Holocaust survivors when they got back to Israel. Obviously, they were in a terrible state. Many of them were wrongly diagnosed as having schizophrenia and locked up and medicated heavily with antipsychotics for 40 or 50 years. That isn’t the alternative, what comes next is the inspirational alternative, a wonderful event which you couldn’t make up.

One of these women is about to be visited by her son but she’s terrified because she’s convinced herself in her delusional state that her son is an SS officer and she hides. It turns out that the son is Israel’s chief psychiatrist visiting his mum. And he finally understands and then starts talking to the other women and finds out there are hundreds of people whose pain, confusion, and silence—many of them hadn’t spoken for years—were explicable by their experience in the camps and in the ghettos, not by some mythical biological illness called schizophrenia.

What he did was, with fellow psychiatrists—and it’s very important to stress this was led by psychiatrists—it took them two or three years but they closed down several institutions holding hundreds of these women, mostly women because a lot of the men had died. They opened trauma-based treatment centers and tried 40-50 years later to reach these people, many of whom hadn’t spoken for decades. It was quite beautiful, they started by getting them animals that reminded them of pets that they had when they were children. It’s a very moving story and they write about how moving it was for the staff and how much they learned, as you can imagine.

There are extreme examples on either end of the spectrum but it seemed important to highlight some of them. There are other ways for psychiatrists and others in the mental health system to try to assist even the most distressed and damaged people, and it starts by understanding what they’ve been through in their lives rather than blaming a non-existent genetic factor or some sort of imagined biochemical imbalance. So we were quite moved by that, and I was lucky enough to have some interactions with those psychiatrists, one of whom has since died. I was just very moved by that and it just seemed fair and appropriate to include that in the story.

Moore: It describes in the paper that they videotaped testimonials from some of the people involved and when those people watched the testimonials back, they didn’t recognize themselves. They had isolated themselves from their experiences to such an extent that they almost thought it was a different person speaking.

Read: That’s right. Can you imagine sitting there with somebody watching that? They did it partly to archive and record but also they thought it would be therapeutic. Eventually, they did start recognizing themselves and they did do some traditional type research where they measured posttraumatic stress symptoms and they decreased gradually over time. It’s all very moving, some of it desperately sad and some of it very inspiring.

Moore: I think that comes back to what you were talking about earlier in terms of why this is so important to research, to record and to understand in terms of its impact on what we do to people today.

Read: Yes, obviously, we’re not doing anything like that. Except, in America in particular, I don’t know about other countries, they are still practicing what they call genetic counseling. You get in people of childbearing age or a couple, one of whom might have a diagnosis of schizophrenia and you explain to them the chances of their children inheriting the supposed illness that they’ve got. Presumably in the hope that some will choose not to go ahead, which I think is scurrilous, unethical, and certainly unscientific.

If there is a genetic basis to any of this, and I don’t think there’s a genetic basis to schizophrenia, I think we are born with different degrees of sensitivity to stress. I think at the end of the day when all this genetic research settles down, that’s what we will find. So this was still in that sense narrowing the gene pool and I think that’s a very dangerous thing to do.

Beyond that, what are the other parallels? Well, we still have compulsion and it’s the only branch of medicine where you can force people to either take medication or have electroshock therapy against their will. So that’s a continuity. Of course, it’s not the same as killing people. But again, in terms of narrowing the gene pool or whatever, some of the drugs, both antidepressants and antipsychotics, clearly affect sexual function. Antipsychotics, if you take them long enough will shorten your lifespan and ECT causes brain damage in some people, we don’t know exactly how many but somewhere between 10% and 50% of people.

So we are still doing things that are harmful and doing it very often with compulsion. That’s different from actively killing people or forcibly sterilizing them, but there is a link there and I firmly believe that we will never have therapeutic mental health systems until we remove the right of any of us to forcibly treat anybody else. While that threat is there, it’s very hard for people to trust the system and you can be given shock therapy or medication that shortens your lifespan and reduces your brain volume against your will.

So I know this will be offensive to some psychiatrists or other people and I’m sorry for that, but I think there will be a time in 50 years when someone will write a paper describing “they used to put electricity through people’s brains and they used to do it against their will, can you imagine? And they used to give them pills and if they didn’t take the pills, they’d hold them down and inject it into them—can you imagine?” I hope there’ll be a James interviewing a John about that in 50 years because it’s got to stop.

Moore: You said that there was little or no recognition at the time of what had happened. So, in modern times, has psychiatry officially responded to and apologized for the horrors vested on people in the name of treatment in those very dark times?

Read: The answer is, yes but only in Germany. Obviously, that’s the first and most appropriate place it should happen. In 2011, the German Association of Neurology and Psychiatry, which I referred to before as having been led on numerous occasions by the people directly responsible, had a full investigation and we end our paper with a quote from Professor Schneider, who was at that point the president of the association.

It’s a superb document, it’s very detailed and it pulls no punches. It ends with Professor Schneider saying “in the name of the German Association for Psychiatry and Psychotherapy, I ask you, the victims and relatives of the victims, for forgiveness for the pain and injustice you suffered in the name of German psychiatry and at the hands of German psychiatrists under national socialism.” And this was particularly important: “And for the silence, trivialization and denial that for far too long characterized psychiatry in post-war Germany.”

The rest of the world hasn’t got there yet in acknowledging this, and I hope our paper plays some small part in moving us towards proper acknowledgement and learning from those horrible events and accelerating the move towards an evidence-based psychosocial, humane approach to human distress that is long overdue.

Moore: In the paper it was really difficult to read mass murder described as “pioneering work.” That’s very hard to take.

Read: Yes, I guess that’s how they saw it at the time. Looking back, did they really think they were doing it for them? We will never be able to get inside the heads of those people but their writing suggests that they thought these people’s lives were so miserable, that they were better off dead. What they really thought we’ll never know.

Moore: Thank you for your time today and thank you for your work with Jeffrey on writing the paper. It’s incredibly important that we don’t lose sight of the consequences of harm in treatment and how we have to be ultra-cautious with anything to do with mental health and its impact on people’s lives.

Read: Thanks, James.

Next, we hear from Jeffrey Masson. Dr. Masson has had a fascinating career in which he studied Sanskrit and psychoanalysis and became director of the Sigmund Freud archives. A prolific author, he has written more than 30 books and has become an advocate for animal rights. He is currently an Honorary Fellow in the Department of Philosophy at the University of Auckland in New Zealand.

Moore: Dr. Masson, welcome. Thank you so much for joining me today.

Jeffrey Masson: A pleasure to be here, James.

Moore: We’re here to talk about a paper that you authored together with professor of psychology Dr. John Read, and this paper appears in the journal Ethical Human Psychology and Psychiatry. The title is “Biological Psychiatry and the Mass Murderer of ‘Schizophrenics’: from Denial to Inspirational Alternative,” and we’ll come on in a minute to talk about the paper. 

But first, I wanted to ask a little bit about you. You’re an author, you have at least 20 books, probably many more to your name. You’re a Sanskrit scholar, a scholar of psychotherapy, and you have an interest in the philosophy of animal rights. But I read that you said you’d written a series of books about psychiatry and you felt that nobody liked them. So, I’d like to ask about that and why you decided to move away from that area of work and then what led to your other many interests?

Masson: Well, it’s a complicated story and I won’t go into detail because it’s far from our topic. I was trained as a classical Freudian psychoanalyst in Toronto for 10 years, which means that I had my own analysis and then I had supervision, then I saw patients and finally, I was admitted as a fully trained clinical psychoanalyst.

I had doubts about it right from day one, mostly having to do with trauma. I expected that psychoanalysis was about how do we explain trauma, how do we help people who have been traumatized, what are our theories about how that works and so on. That turned out not to be the case at all. I realize now in retrospect it was all about this notion that patients don’t know what’s happened to them, only the psychiatrists does. That today, then and forever will seem to me absurd. The only person who knows is the person.

So in my opinion, the job of the analyst is to say “Well, it sounds to me like you’ve had a rough childhood or things have happened to you, can we talk about that?” But that’s not what they were doing. So they were not respecting the patient even though these were people who were either psychoanalysts already or becoming psychoanalysts. They still really identified with psychiatry, which meant they thought of people having brain disorders or genetic malfunctions, needing medication or needing ECT.

I can still remember when they sent me to a psychiatric hospital to observe the results of ECT and there was a poor Uruguayan and I happen to have lived in Uruguay and I spoke perfect Spanish. I started talking to him and he said, “Please, please tell them not to do this. I’m terrified.” I said, “I will do my best” and I went to them and I said, “You can’t do this. This guy doesn’t want it. How can you do something he doesn’t want?” They said, “He needs this for his own good.” I said, “Oh, come on, if you have a man saying don’t do this to me, don’t do it. It’s as simple as that.” And they said, “You’re only here to observe, why don’t you just shut up?”

I never went back, and I thought this is not for me. I started questioning within the first year of what was a 10-year training. I have to say it was a waste of 10 years in one sense. On the other hand, I learned what I don’t like and I got some books out of it. I’ve written about 31 books altogether but about 10 of them had to do with what’s wrong with psychiatry, psychoanalysis, psychology, and Jung.

I learned to hate it, I mean, that’s the truth. I’m not indifferent about psychiatry. I’m not willing to hear the other side. I’ve already heard the other side and I don’t like it. I got very radicalized in my own mind. First of all, I had quite a bit to do after I became an analyst with the anti-psychiatry movement, what they would call the patients’ rights movement. I was very impressed and I still am. It’s not as much of a force in America as it used to be. I think simply because psychiatry now has so much money and they’re so obnoxious, they just won’t listen. In all my 10 years of training, not once did we bring in a real person who had undergone any of this to hear their criticism, which made me very unhappy and very nervous. I mean, wait a minute, you’ve got these thousands, literally thousands of people who say “this harmed me,” why aren’t you willing to listen to them?

So I carry this further, I guess, than my wonderful friend—I would call him in many ways my best friend—John Read, because we were together for many years in New Zealand. The only thing we disagree about is therapy. I came away very skeptical of all therapy and I guess that made me a real outlier, even within the patients’ rights movement. I wrote a book called Against Therapy. Therapy, it seemed to me, was just too close to psychiatry, even feminist therapy, even so-called Radical Therapy like R.D. Laing. I mean, Laing remained a psychiatrist his whole life.

On the one hand, I think it’s perfectly legitimate for anybody who suffered from depression—though I’d rather call it sadness or serious sadness. People who have serious sadness have every right to seek whatever help they can get. So if they want to go to see a therapist, I’m not going to tell them not to, but I would tell them to be careful because many therapists are going to say, “Well, this is just a brain disease” and they are going to put you on medication and things will get worse.

Or now behavioral therapy is going to tell them, “You’re just looking at the world in the wrong way. If only you looked at it the way I look at it, you wouldn’t be depressed.” They don’t know what they’re talking about and they have no right to say that to anybody. So, I guess somebody like John Read, who is a humane and decent human being, if he were your therapist, he would not do any harm. I am sure of that.

I’m sure there are others but how do you identify them? You go and see somebody because they’re listed in a phone book or a friend tells you, they don’t say much and slowly you learn that they’re into Brexit or they’re into some sort of denial of child abuse. God knows what their problems are and it only means it can be very hard for them to understand you. So, I wouldn’t trust just anybody.

Now, where does that leave people who need help? I don’t know. I’m not claiming that I have a solution. I’m just saying that what we’re offered is not great and it’s not reliable and it’s not entirely human, it’s not like a friend talking.

Moore: You obviously have a connection with John Read but how was it that the two of you came to decide to write this paper on some of the historic horrors perpetrated on the so-called mentally ill in the Second World War years?

Masson: I first became interested in the Holocaust as a teenager. I’m Jewish and it was one of the few topics that fascinated me, I just couldn’t read enough. I remember seeing the famous French film The Sorrow and the Pity and then I read Hannah Arendt’s Eichmann in Jerusalem, which I hated.

I was married to a woman who was a survivor of the Holocaust, she was born in 1937 in Warsaw, she was Jewish and she was in the Warsaw Ghetto. So of course, we talked a lot about trauma and what it does to you. She and I together went to visit Anna Freud long before I had anything to do with the Freud archive, that was just the beginning my analytic training and she reluctantly agreed to see me and my wife.

I know that Anna Freud had been hauled in by the Gestapo in 1938 and it was one of the reasons that Freud agreed to leave Vienna. Nobody knows what happened to her that afternoon but it must have been ghastly. My wife at the time also had ghastly experiences, of course, with Germans, and I thought the two would bond but they did not.

We quite openly said, “We’re here because of my wife’s past and my interest in the Holocaust and our question to you is, why is it that psychoanalysts have not paid more attention to the Second World War and to the trauma that people went through?” I can’t remember reading anything profound about that at that time, this is 1974 or so and there was nothing. I expected her to say “Yes, that’s terrible. I agree with you” but she did not. She said, “Well, that’s reality and analysts are interested in fantasy.” I said, “Well, you know, nobody went through the Holocaust with fantasies, they went through it in reality.” She just tossed it aside, and that bothered me. I thought, oh, maybe I’m in the wrong profession.

I did believe for a long time that the purpose of analysis was to uncover buried memories and to make those memories tolerable, to bring them to consciousness to think about them and then to think about what could result. Now, if that were all the therapists did, I would have no problem with it. But of course, they don’t.

My wife at the time was in analysis with a man whose name to me sounded very German, she assumed he was Jewish. It turned out he was of German ancestry. In fact, he had something to do with the Hitlerjugend (Hitler Youth). He was not at all sympathetic to what she was telling him and she just had no clue. When I became a candidate, I, of course, began to know him and I told her and she quit. But for me was kind of the model of how any patient or any client, whatever you want to call them, anybody who’s in some sort of therapy or analysis or psychiatric treatment just has no clue who they’re dealing with.

So it’s very dangerous, in my opinion, and I think people do get hurt. Of course, some people say “I was helped”, and who am I to say they weren’t? But I do know many people have been harmed by psychiatry. I think there are a lot of people who’ve been harmed by analysis and there are many people harmed by therapy. That is my interest, those who are harmed.

Moore: Your paper is a challenging read. It’s fascinating as a historical document, but it’s challenging in terms of knowing that humans can do that to each other. I wondered what you felt as you were doing the research and writing it?

Masson: That’s a good question, James. I felt very bad. John and I were originally going to write a book on psychiatry in the Holocaust and I did a lot of research, which meant spending time in Germany, spending time in concentration camps, archives, and libraries. There are probably 100,000 books written now about the Holocaust, it’s a huge field. Psychiatry and the Holocaust much less but there’s a lot written, especially in German.

As I read it, I just got very depressed, it was such awful stuff. As you say, how can humans do this to other humans, it often made me cry. Then I married a German woman, much younger than myself. She hadn’t been through any of this and she was very sympathetic but I could see that it was having a bad impact on her. I’d come home having read these horrible stories about children. She didn’t want to hear about children being starved to death or killed. As a German, it was very hard for her to hear that.

I thought, if I write this book and spend the next four to five years researching this and come home every day with horror stories, it’s going to affect my marriage and her mental health and my mental health. So in the end, I feel that I’ve said the main things that needed to be said in that paper and I also feel that John was able to take out something positive from it where I could not.

When I was in Israel, I met several Jewish psychiatrists and I assumed they would be on my side but they were not. This was in the 1980s, and they had been trained in Germany, and remained German psychiatrists, so they had no critique. I did not find that they had any greater sympathy or any greater understanding of trauma than anyone else. So that was very disappointing to me.

But things are starting to change, as John found out. The story he tells in the paper, which is his story, about the woman who was a Holocaust survivor, whose son was chief of psychiatry and finally realized that all her problems stemmed from not talking about what had happened to her. I believe that for every major so-called mental illness, I think that people who are deeply depressed have things they either can’t remember or can’t talk about or do not have somebody sympathetic enough to listen.

Any child who has been beaten or abused is a survivor and very similar to Holocaust survivors. So, that her son was able to shift his whole thinking and then to shift the hospital into recognizing her problems, that is a real achievement. I agree with John, it does give you hope. I would want to follow up and see how many other hospitals in Israel are doing that. Can a whole culture change itself? Well, maybe, but that was not my focus. My focus was on what happened and that’s not a pretty topic.

Moore: It was so difficult to read not only that these things happened, but also how many psychiatrists in Germany were members of the Nazi Party and then how few doctors or psychiatrists spoke out about the horrors. I think it said in the paper that one was executed but very few spoke out at all about these horrors, did they?

Masson: No, or faced any consequences. There is a book that’s received a lot of good press by Robert Jay Lifton, called The Nazi Doctors and I just abhor that book, I cannot bear to read it. I did read it carefully but it’s so wrong.

I can tell you one quick anecdote that will illustrate what’s wrong with that kind of book. He’s a psychiatrist, Robert Lifton, he’s still around and he did some very good work on Hiroshima. But he has this, I think, quite idiotic explanation for why German psychiatrists did what they did. He calls it “doubling.” So, they would have a double personality, they’d go in and kill patients and then they’d come home and they’d be great fathers. I don’t believe that, I really don’t believe it.

To illustrate this, he talks about a Jewish psychiatrist in Auschwitz, who became friends with a doctor in Auschwitz because they both wanted to experiment with ECT on patients. And Robert Lifton said, “this is wonderful, it just shows you that we can cross the barrier.” This is so wrong on so many levels that they would bond over torturing patients.

So as you can see, it was a hard article for me to write but because I was doing it with John Read, who is the picture of absolute integrity, kindness, empathy, and super smart, I was glad to do it. And I know German, he doesn’t, so I was able to bring some things to it that he couldn’t. He has a more cheerful view of humanity than I do and was able to find the bright side of the change that’s happening. So, I’m proud of that article and I’m so glad that it’s out there in the public domain and that it seems to be getting attention.

Moore: It’s incredibly important to recount these past horrors, but I wondered if you felt that this history has a bearing on how we treat people diagnosed as mentally ill in modern times?

Masson: Oh, absolutely. I’ve been away from the field of psychiatry and psychoanalysis and psychology for so long that whenever I do talk to professionals, they say, “Well, you know, was very bad in your days, but it’s changed.” I don’t think it has. I read everything that John Read writes and I can see from his writings that things have not changed at all. ECT is still being used in America and drugs are more popular than ever. I don’t have the expertise to pronounce on it but I don’t like psychiatric drugs at all. I think they do a huge amount of harm.

By and large, I don’t think psychiatry has changed very much. What surprises me, and I guess it surprises John, too, is how many psychiatrists around the world are interested in the history of psychiatry in The Third Reich. And not only in The Third Reich, as John pointed out, but America was also doing horrible things and even in Sweden.

I was very pleased to see that head of the German psychiatric society, Schneider, apologized. I don’t know if he was speaking for himself or the whole society but I thought that was wonderful. Right now I’m talking to you from Berlin and it is very definitely a different place than it was many years ago. It is nice to see that in some respects people are moving in the right direction. I think the very fact that people feel so strongly about Ukraine is a good sign. I remember that it was considered a miracle that Angela Merkel allowed 1 million Syrian refugees to come into Germany. But it turns out that it was a very good thing for everybody, it helped the economy.

Poland has allowed in 3.5 million Ukrainians, and that’s extraordinary and wonderful and does give you hope. I don’t see a big movement to get psychiatrists in there to deal with them, it’s a human problem and to some extent, psychiatry, in my opinion, is not entirely human. I know, that’s a big statement and any psychiatrist listening to this is going to stop listening at this point. I guess you can go into psychiatry because you want to help, I understand that. But I think once you see what they’re doing, you have to quit. I do get mail from time to time, from therapists, analysts, and psychiatrists who have thought about it deeply, read my books, read other things and decided “this is not for me.” So it does happen, but it’s rare.

Moore: You said there hasn’t been that much change in terms of a humane response to distress. So, I wondered if you had any thoughts about why that change hasn’t happened. What’s preventing psychiatry from being more humane do you think?

Masson: That’s a very good question and I have thought about this a lot. I’m 81 years old, so, having written 31 books, I think that’s enough, but I would like one last book and it would be called What’s Wrong With Our Species? I’ve written a lot of books about animal emotions because that fascinates me. No animal has ever done anything remotely resembling what humans do to one another, they just don’t do it. That gives me a clue that something has gone wrong with us. I think that any psychiatrist who is willing to listen to the movement of patients who’ve been harmed and really take it in, would have to ask himself or herself, what have we done wrong? Very few have done this.

So I think what’s stopping it is partly greed. Psychiatrists do make a lot of money and when they prescribe drugs they do even better because you can do that in a few minutes. I’ve met psychiatrists who told me, “I just give them a new prescription, it takes me two or three minutes and I can see 20 patients in one hour.” At $200 a pop, that’s a lot of money. When you’re making half a million or a million dollars a year from what you do, it’s very hard to convince someone that this isn’t the right thing to do or to find another profession.

What I found difficult is that you can’t even convince them to read about something. The most profound book I ever read against psychiatry is called Too Much Anger, Too Many Tears by Janet Gotkin. At 17, she was put in a psychiatric hospital in New York, and given 120 shock treatments without any kind of anesthesia or painkillers. That she came out of it able to write this book is to me a miracle. She’s now almost 80 and I correspond with her regularly and she just wants nothing to do with psychiatry anymore after having written that book, but her book is profound.

I once gave it to a psychiatrist who I thought of as a friend. I said, “Please read this” and she gave it back to me and said, “It’s not worth it, there’s nothing new in it.” I just lost my temper; we never talked again. So, they’re not willing to take in criticism of their field and that bothers me a lot. In other medical fields, I can’t imagine that if you told the surgeon “Look, what you’re doing is now been superseded by a better method, do you want to learn about it?” They’d say, “Sure.” But something about psychiatry makes the people who practice it tend towards arrogance, to think “I know how the mind works.” No, you don’t, nobody knows how the mind works.

Moore: I’m very interested to know what it was that interested you in the philosophy of how we treat animals. You said that animals don’t treat each other the way that we humans treat each other as a species. But, of course, we treat animals very badly and so I wondered if you thought there were parallels between how we treat each other, the mass slaughter of animals and how we take advantage of the creatures of this planet?

Masson: Oh, absolutely, you just put it in a nutshell. There have been a number of Holocaust survivors who have compared the Holocaust experience to the way we treat animals today, and people get crazed about this. They hate to see that. But the truth is, it is similar. I’ve often asked myself, how could these people have done that to innocent children? How do you take a little five-year-old or six-year-old and send them to a gas chamber? How is it possible? You know, you drive yourself crazy, as Primo Levi stated, you just can’t think about it. If you think about it too long you go partly insane. It’s just unbearable. And yet, we do very similar things to animals.

I was reading something yesterday, a very interesting book that the author sent me. It’s by a psychoanalyst who was the victim of incest. He writes about it very honestly and he writes against his profession of psychoanalysis. He talks about how he was very badly sexually abused as a very young boy and he heard screaming, which was his own screaming. He said, “only later in life that I heard the same scream, it came from a pig who was being slaughtered.” I thought, wow, I know, not from direct experience but I’ve read that many times that when pigs are slaughtered, they sound like children being hurt, they scream and it’s just like a human.

I thought, how do people do this? How does somebody cut the throat of a pig and listen to this? Of course, we do it 6 billion times a year to animals. That too is changing. I went for a long bike ride with my son through Berlin last night and we came to one street where there were five vegan restaurants on one street. It must be the only place in the world.

I do believe that if you look at what happens to animals, they get taken in these trains, they are staring out and as soon as they reach the destination, their throats are cut, and all this for what? To ruin the planet to make ourselves physically sick. So I’m a vegan and I’ve been vegan for 18 years now. For me, it definitely was having to do with my understanding of the Holocaust and that I saw the parallels there and I thought “I just don’t want anything to do with this.”

Moore: You’ve written so many books, is there one that you’d recommend that people could read that’s a good general introduction to you and your ideas?

Masson: I think my best book, apart from The Assault on Truth, is called Beasts: What Animals Can Teach Us About the Origins of Good and Evil. Because there I address this question that you asked me about—animals not being vicious in the way that humans are. I go into great detail about this, even sharks and killer whales and crocodiles. They don’t do what we do, they don’t hunt for pleasure the way humans do. So, I wanted to understand that, and it will be the beginning of the book What’s Wrong With Our Species—which I’m not able to write because they don’t have an answer yet.

There is something wrong, but I haven’t found it. As you can see, it hasn’t gotten me down. I’m a very happy person and I’m very lucky, being married to this extraordinary woman. I am writing for her children a book called The World According to Lila. That’s her name, Leila, and she is the most unusual person I’ve ever met, in the best sense of the word.

Moore: Thank you so much for your time today. It’s been fascinating to hear about what led to your work with John to write this paper. I recommend that listeners read it. It is a challenging read, but it’s so important to understand what happened at that particular time, how psychiatry did or didn’t react to it and how people then went on to find a way out of the trauma that they’d experienced while they were involved in some horrific things.

Thank you so much for your work and for spending some time with me to just touch on a tiny part of your fascinating life.

Masson: Thank you, James. I can’t remember having somebody ask such interesting questions as you did.

The post John Read and Jeffrey Masson – Biological Psychiatry and the Mass Murder of “Schizophrenics” appeared first on Mad In America.

]]> https://www.madinamerica.com/2022/08/read-masson-biological-psychiatry-mass-murder-schizophrenics/feed/ 38 https://www.madinamerica.com/2022/07/andrew-scull-desperate-remedies/ https://www.madinamerica.com/2022/07/andrew-scull-desperate-remedies/#comments Wed, 13 Jul 2022 10:01:22 +0000 https://www.madinamerica.com/?p=235065 Sociologist and author Andrew Scull discusses the history of psychiatry's "Desperate Remedies," from lobotomy and the asylum to the failures of today's drugs and the fads of ketamine and deep brain stimulation.

The post Andrew Scull—Desperate Remedies: Psychiatry’s Turbulent Quest to Cure Mental Illness appeared first on Mad In America.

]]> Our guest today is sociologist and author, Doctor Andrew Scull. Andrew is a professor of Sociology and Science Studies at the University of California, San Diego, and recipient of the Roy Porter Medal for lifetime contributions to the history of medicine and the Eric T. Carlson Award for lifetime contributions to the history of psychiatry.

The author of more than a dozen books, his work has been translated into more than fifteen languages and he has received fellowships from, among others, the Guggenheim Foundation, the American Council of Learned Societies and the Shelby Cullom Davis Center for Historical Studies.

In this interview, we discuss his latest book, Desperate Remedies: Psychiatry’s Turbulent Quest to Cure Mental Illness, published by Harvard Press in May 2022.

Dirk Wittenborn, the screenwriter and novelist, described the book as “A riveting chronicle of faulty science, false promises, arrogance, greed, and shocking disregard for the wellbeing of patients suffering from mental disorders. An eloquent, meticulously documented, clear-eyed call for change.”

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: You are a distinguished professor of sociology and science studies at the University of California and your many books seem to share a similar theme in exploring the history of psychiatry and the cultural history of insanity. How was it that you became interested in researching madness?

Andrew Scull: I first began working in the field in the early 1970s and at that point, I have to say I did not intend to make this my career. I thought I’d write a single book on the emergence of the asylum and the simultaneous construction of psychiatry as a profession in Victorian England and I suspected that I would then move on in rather different directions.

I was led to that area of research by encountering a couple of books that were receiving quite a lot of attention at the time that I first encountered the field. One was David Rothman’s book called The Discovery Of The Asylum which was about the creation of the asylum system in the United States and offered a very ethnocentric view. It was very much as though it was an American discovery which I already was inclined to doubt. The other book was one that is very famous and is echoed by the title of one of my books, Madness in Civilization, but that was the book by Michel Foucault that was translated in an abbreviated form as Madness and Civilization.

When I first encountered that book, Foucault had not become the huge international cult figure that he became within a few years. He was obviously very important in French intellectual circles, but it’s fairly unusual for a French intellectual to make the kind of impact that Foucault did across a whole array of disciplines. Reading those two books convinced me that this was a subject of considerable intellectual importance, and there was nothing comparable written at that point on the English scene.

That was really the launch of my interest and I then emigrated to America for what I thought was a short-term basis to do my doctoral work. It turned out my career started in the United States and, except for some time in England, has continued there.

When I was trying to get a job, one of the rituals in American academic life is that you go around and present a potted history of your research. In this case, I was trying to get a job in a sociology department talking about Victorian Lunacy Reform, which was a rather odd thing to try to do. But as I went around and gave this talk, my sociological colleagues knew virtually nothing about the substance of what I was talking about, and they would say things like, “well, aren’t you glad they’re shutting these places down now?” or “what’s happening in the current environment? Forget about stuff that’s 100 years old, tell us about now.”

I’d been so buried in the asylum archives and in the medical literature about insanity that I really didn’t know and I thought “that’s a really interesting question.” Is it really the case, because there had been a huge amount of social and intellectual capital invested in creating these institutions, justifying them, defending them, and persuading people, that they were the appropriate response to serious mental illness. I thought that I should investigate this, and I did. 

I went backwards from the 19th century into the 18th century and did a substantial amount of work on how families and patients came to the attention of mad doctors, the predecessors of modern psychiatry. I moved forward into the early 20th century which was a very unexplored territory at that point. A number of other people had jumped in and looked at Victorian asylums, but hardly anybody had really looked at the 20th century.

As I began those researches I encountered things like lobotomy and I encountered focal sepsis and the idea that you could cure mental illness by eviscerating people. I thought that I really ought to write a book called Desperate Remedies and I already had that title in mind. At that point, my focus was on the first three or four decades of the 20th century when these horrors were visited on captive mental patients. I wrote many other things along the way but kept coming back to that topic and doing research whenever I had the chance.

Since psychiatry had taken a turn towards biological reductionism once again in the 1980s and going forward, I needed to talk about that. Why had that happened? What had been the consequences? Part of that story was the collapse of psychoanalysis which dominated American psychiatry in the period immediately after World War II. Part of it was the drugs revolution, the psychopharmacological discoveries that had underpinned this move towards treating mental illness with things that looked like the sorts of things that mainstream medicine was using to treat other kinds of diseases.

The other side of that was the attempt to provide a theoretical underpinning for this biological revolution. That is the move back once again to looking at the genetics of mental illness and the rise of neuroscience which emerged in the late ’60s and the ’70s and had become, in academic psychiatry, the kind of dominant force as opposed to what the people actually in the trenches dealing with mental illness were up to.

That entailed a lot of reading, a lot of thinking about those issues, and ultimately as I read the literature, largely the failure to be able to comprehend the etiology of any of the things psychiatrists have labeled schizophrenia, bipolar disorder, major depression. There are no biological markers for those things. When you look at the genetics, it’s actually tended to undermine the idea that these are separable conditions. As to the neuroscience, there have been advances in the understanding of the enormously complicated thing that is our brain but these had led clinically nowhere as far as I could see.

Moore: Many promises but not much result.

Scull: Psychiatry has offered promissory notes over and over again in its history and it has dishonored every one of them, more or less. That’s not to say there hasn’t been some movement and some progress. I don’t entirely dismiss drugs though I’m highly critical of the ways in which there’s a Panglossian portrait of how much good they do. It’s a very much more mixed picture and indeed for many mentally ill people these drugs simply don’t work and they often have terrible side effects.

One needs a more balanced look at that it seems to me and I always thought this partly because I knew some people who’d become very seriously disturbed and in one case had committed suicide. I wasn’t one to deny the reality of mental illness and the suffering that it causes. As one of my friends and psychiatric historian colleagues, Michael McDonald put it, he said, “Madness is the most solitary of afflictions for the person suffering from it, and the most social maladies for everyone around them. When people become seriously depressed or hallucinate and embrace delusions about the world, the problems that creates are not just problems for the individual sufferer, but most importantly for their family if they have one and for the larger community, it’s impossible to escape that.”

One of the things about mental illness that I think is almost a historical universal, I hesitate to say that but I think having studied everything from ancient Greece and Palestine and ancient China to now I can say that it is enveloped by stigma and rejection. That compounds whatever problems the mental disturbance brings in its wake and is a real problem that seems impossible to escape. More than that, in an odd kind of way, the stigma that accrues to mental illness itself also sticks to the people charged with treating it or the people who have not accidentally come to be treating it. Of all the branches of medicine, psychiatry is among the most despised, the branch about which we’re highly skeptical.

There’s no anti-cardiology but there is an anti-psychiatry. The problem of course is that psychiatric history throws up all too many pieces of evidence that some of that opprobrium is well earned. Some of the things that psychiatrists have done, not just for their patients but to their patients, neglecting them as having any voice in the whole process, really are very disturbing.

When I was researching Desperate Remedies, there’s this odd kind of thing as a historian, you discover remarkable stories that you can tell based on what you discover in the archives. For example, finding that Walter Freeman, America’s leading lobotomist, talked his patients through the operations and recorded them. I reproduce one of these transcripts in the book. On the one hand, you’re saying, “wow, this is fabulous material.” On the other side of the coin you’re going, “my God, what a monster this man was.” 

The way it worked in the early stages of lobotomy before he resorted to the ice pick lobotomies after the war, was that they would do it under local anesthetic. You’d be fully conscious, they drill holes through your skull, like a dentist drilling your tooth only 10 times as bad, and then they slice your brain with a butter knife.

When to stop in this so-called precision lobotomy? Well, when the patient became confused, so you would talk them through it, and when they started to lose track, that was the signal to stop operating. In the case of one patient, Freeman says, apropos of a whole string of questions, “what’s passing through your mind, Mr. Morgan?” There’s a pause and Mr. Morgan answers “a knife.”

I was researching Henry Cotton, who was the Superintendent of New Jersey State Asylum in Trenton, and who conceived the idea that mental illness was the result of your brain being poisoned by lurking infections in various corners of the body. In a pre-antibiotic era, what were you going to do? Well, you had to practice surgical bacteriology. In other words, you had to rip the offending infections out. First, teeth and tonsils and when that didn’t work, you were swallowing the germs, they were going down into the stomach and the spleen and the colon, in the case of women to the uterus for some odd reason. You went in and you discarded these organs one after another sometimes operating two and three times, confessing in print that you were killing 30% of the people you did the serious surgery on to no rebuke. There was no sense that this was improper.

In fact, you were killing 45% of the people you operated on in this way. This went on for nearly two decades. The pulling of teeth and the removal of tonsils at Trenton continued all the way to 1960. I actually interviewed the dentist who had literally pulled hundreds of thousands of teeth in the pursuit of a cure for mental illness and still believed this was correct. Of course, it was utterly bizarre and yet the profession and in particular, its leader Adolf Meyer, at Johns Hopkins didn’t question what was going on, although some people doubted Cotton’s results.

But Meyer knew from the report of one of his assistants, Phyllis Greenacre, that far from curing patients, the more of this treatment people got, the worse the outcome and he suppressed the report. Then when Cotton died unexpectedly from a heart attack, Meyer wrote an obituary saying what a shame it was for psychiatry that such a promising line of inquiry and such a great man had been taken prematurely from our midst.

You encounter these things and they’re great material for a book but they’re also deeply disturbing. When I was doing the Cotton work in the 1980s and early 1990s, I had very little money and I was staying in something that looked a bit like Bates Motel in Psycho. I’d read these patient reports and I turned the page and it would say died, and I’d go back at night and reflect on what I had just seen and it was deeply upsetting. I periodically got contacted by relatives of people who were in Trenton. Somebody got in touch with me and said, “My grandmother was there in 1929. Where can I get the records?” I said, “Well when I was there, they were in the hospital basement.” I lived there with the cockroaches and the vermin while I was researching this with no air conditioning in the New Jersey summer, it was no great fun.

I said, “They’re there, or they may have been transferred to the New Jersey State Archives.” Well, indeed, it turns out some of the hospital records have been. The rest have mysteriously disappeared, no one can now replicate what I did, because it’s pretty clear that the hospital authorities sanitized the whole thing by chucking them out. There were detailed records on every single patient, they no longer exist. What an odd coincidence. If one were inclined to conspiracy, one might think that the profession would determine that it was time to bury those records once and for all.

Moore: I’ve shared the sense of horror in reading Desperate Remedies and reading the history of psychiatry, it’s impossible not to be affected by it. But what comes across for me strongly, the question that entered my mind as I got to the end is, why is it that psychiatry as a discipline seems so vulnerable to fads? New bodily treatments hailed as great advances, yet they never seem to stand the test of time. That was apparent in your writing about the early stages of psychiatry but still seems to be going on today. I wondered what your research had told you about that?

Scull: Well, Desperate Remedies as a title has a kind of ambiguous set of meanings that is pretty obvious when we’re talking about some of the extreme things like injecting horse serum into people’s spines to give them meningitis as a way of curing their mental illness or putting them in prolonged comas with barbiturates and then with insulin. What’s going on here?

I think if we look at the long history when the asylum is born it is an attempt to rescue the mentally ill from the jails and the prisons and the garrets and the pigsties where they’re confined. It launched in a period of extreme optimism when the world is changing dramatically around people. Transportation, canals, railroads, markets opening up, work changing dramatically and people’s day-to-day routines being transformed. Human nature seems to be malleable, the environment seems to matter and seems to be something we can control. The first institutions are labeled retreats after the York Retreat in England, or asylums with a very positive sense of that term.

Moore: A place of refuge, it means.

Scull: Right, it’s a refuge. It later acquires terrible meanings, but at the outset, this is extraordinary optimism and America is bidding up cure rates. Early psychiatry, they don’t yet call themselves psychiatrists, they call themselves medical superintendents, which gives away what their authority derives from. We’re going to cure 60, 70, 80%, or perhaps even more of patients as long as they come quickly.

But the actual cure rates were more like 30 or 40%. When I say cure, these were people who, with some respite and care, were able to be restored to the community with some semblance of ability to cope with daily life, but that left behind a very large fraction of each year’s intake.

Over time, simple mathematics means a couple of things. First of all, the institutions were compelled to grow and grow massively, so that institutions of 30 or 40 patients became 1,000, 5,000, even 10,000 in the early 20th century. Of course, individual care becomes virtually impossible once you’ve got warehouses of unwanted people of that size. 

That was one outcome and the other is that the image of the asylum became one as a place where you went and you didn’t come out. That was slightly incorrect; of each year’s intake, a certain fraction did indeed emerge within the first 12 months, but if that didn’t happen you went to what Goffman called a lovely euphemism, “continuous treatment wards,” or no treatment wards. That meant psychiatry had this huge problem: how to explain away what appeared to be a tremendous failure of going backwards, not progressing.

The initial response was to blame the victim. It was the mental patient’s fault because they were biologically defective. In an era where evolutionary ideas are becoming increasingly common in the last third of the 19th century, these were a group of people in whom evolution had run in reverse. They were degenerates, they were moral lepers, they were people who’d lost their humanity. The best thing to do was to lock them away because otherwise, they’d breed uncontrollably and we’d have even more mad people in the next generation.

That explained away why it was a good thing that the profession was failing to cure them. You didn’t want them out in the world reproducing their defective kind, so what else might one do? The answer in early 20th century America is to snuff out their ability to reproduce and then you might be able to release them. Compulsory sterilization laws appeared on the scene, and eventually, a case reached the Supreme Court of America in 1927, Buck v. Bell, the case of a young woman who’d been sterilized against her will. The Supreme Court in an 8-1 ruling written by Chief Justice Oliver Wendell Holmes, one of America’s great jurists said, yes, the state had a compelling interest here. Three generations of idiots were enough, they could, in fact, do this.

California became then the leader in actually conducting these things and continued to do it until 1960. The Nazis adopted California’s law; the superintendent of Stockton State Hospital, a woman I might add, boasted that it was her state’s laws that had guided the Nazis to their sterilization. Whereas in liberal democracies there were some checks and balances and there were opponents of sterilization and there were some limits, in Nazi Germany, there were none.

Then, by the end of the 1930s, Hitler and his cronies decided these were, as he put it, “useless eaters.” They were just consuming resources, they weren’t going to get better, so kill them, kill them all. With the active participation of most leading German psychiatrists, they started shooting them and then the gas chamber technology came in. They killed perhaps a quarter of a million patients and then they packed up the apparatus and moved it to the death camps along with the personnel because now they had worked out how to do it. The mentally ill were the first victims of the final solution.

To be boarding housekeepers, to just lodge the mentally ill or to sterilize them, sat uncomfortably with people who wanted to be thought of as engaged in curing people in a therapeutic exercise. The alternative route forward, having decided that mental illness was rooted in the body, was to say “well, perhaps biology could lead us towards a cure.” What then happens is ambitious men—and it’s mostly men in this era—embark on a series of experiments to try to solve this problem and desperation exists on all sides here. Families are desperate for something to be done. Patients, in some cases, if they retain some agency and voice, are also pretty desperate.

When mental patients were shut up in the asylum, they were shut up in a double sense. They were obviously incarcerated, but their voices were shut up. Whatever they said didn’t matter, because it was a product of their madness, and so could be disregarded. This was a kind of perfect storm, it allowed for any number of interventions to be constructed and visited upon helpless people. Often, even when families were asked to give permission, which was not the norm, they readily gave it. After all, the authority figures were telling them that this was their best chance of restoring their loved one to sanity, even if they went elsewhere. For example, John Fulton at Yale was America’s leading brain physiologist and if he’d been consulted he’d have told his rich consultees, “yes you should get a lobotomy.”

Harvard had a very active lobotomy program. Columbia had an active program, Yale had an active program, University of Pennsylvania, Duke—all of these major medical centers into the 1950s, two decades after the operation’s arrival, were still telling people that this was the solution, and indeed were saying we shouldn’t wait, we should operate. If somebody isn’t better within six months or a year, that’s when we should perform a lobotomy, don’t wait till they’ve deteriorated, because then it’s almost too late.

Moore: It got worse, didn’t it? I was shocked to read in the book that not only did they lobotomize people but then if they didn’t see the results from the lobotomy they expected they then gave multiple rounds of ECT to that person to try and elicit a response from the failed lobotomy.

Scull: Absolutely, or Freeman would often operate twice, even three times. He did so within the space of about five or six days after the operation because, as he explained, these noisy mental patients on general wards were really disruptive and besides, they couldn’t afford to keep paying for inpatient care for too long. So if you didn’t get a result, you went back in and did it again. 

Also, one of the things I discovered as I went along was that women were preferentially singled out for many of these desperate remedies. That was true of lobotomy. The statistics are anywhere between 60 and 80% of the cases were female. There was something obviously different about female brains, that was the way things were reasoned about then.

The other thing is that Freeman was willing to operate on children as young as four years of age and indeed said that children’s brains could sustain more damage and the child could become like a pet in the household. 

I did a PBS documentary probably about 15 years ago called The Lobotomist about Freeman, which I thought was a bit of a whitewash of Freeman. I really think of him as a monster. One of the other participants in the program was one of Freeman’s last lobotomy cases. He almost was kicked out at George Washington in 1954 and he moved west to the Bay Area and resumed lobotomizing in private hospitals. This was a young man who at the age of 11 had been lobotomized, a man named Howard Dully, and his parents had divorced, his father had remarried, his stepmother found this 11-year-old a pain in the ass. No surprise, they are resentful of the new situation. Her solution was to take him to Freeman and have him lobotomized. The lobotomy, because it involves a direct assault on the brain, is perhaps the most fearsome and striking of these interventions.

The psychological treatment of mental illness, which these days tends to be some variation of cognitive-behavioral therapy (CBT), is largely outside the ranks of medicine. The emergence after the war of clinical psychology plays a major role in that and thus does managed care. 

In America, we pay for medical and psychiatric care, and people are used to that. But the insurance companies found CBT to be a much cheaper option. Unlike psychoanalysis it was directed at suppressing symptoms rather than treating the symptoms the psychoanalyst claimed were emblematic of an underlying, much more complex, psychological reality. It’s clinical psychologists, by and large, who now offer psychotherapy as a treatment. That’s a heavily feminized profession and as a sociologist, I know when you look at the jobs, those that are female-dominated tend to be paid less. Certainly, clinical psychologists don’t demand the same fees as psychiatrists and if they did, the insurance companies wouldn’t pay them.

The only exception to that is a small group of psychiatrists still clinging in most cases to psychoanalysis, who take patients not covered by insurance, and that of course means it’s a very niche market only for the very wealthy, because who else can pay that cost?

Moore: In the early stages of the book, the asylum period and the somatic “treatments,” cure is mentioned an awful lot. “We can cure mental illness, we’ve got all these new treatments.” But as you then get into the latter part of the book, the modern history of psychiatry, cure disappears from the picture and it becomes much more about symptom management. I wondered what you thought led to that kind of transition? We’re not talking about curing “mental illness” anymore, we’re talking about managing these conditions.

Scull: I think much of that reflects the limitations of what psychiatrists can do for their patients. A new wave of drugs emerges serendipitously in the early 1950s. We’re talking about anti-psychotics like Thorazine and the first generation of antidepressants or we’re talking about the so-called minor tranquilizers, Miltown, Valium, Librium, those sorts of things. Early on there’s talk about cure, but it becomes increasingly apparent that’s not what’s happening. 

These drugs aren’t psychiatric penicillin, very far from it. They are, at best, something that manages some of the symptoms, and I emphasize some, of the symptoms that people are complaining of, are suffering from.

With respect to “schizophrenia,” for example, I put that label in quotations because, as Robin Murray of the Institute of Psychiatry has recently put it, he thinks that within 10 years that diagnosis is going to vanish because the evidence for it as a separate condition is evaporating. But in any event, if we take that, classically, psychiatrists talk about positive and negative symptoms of schizophrenia. This reminds me of when oncologists talk about benign brain tumors. I can’t imagine a brain tumor being benign, but I know what they’re getting at. It’s not cancer.

The positive symptoms of schizophrenia, the delusions and the hallucinations that plague people, do seem for some, by no means all, but some fraction of the patients to be somewhat alleviated, or people stopped caring about them even if they’re experiencing them under the effect of these drugs. But in many ways, far more damaging are the so-called negative effects. We are talking about apathy, blunted social affect, difficulty interacting with people, disorders of thought and language, incapacity to deal with the business of everyday life. None of the drugs really touch those, and so you get a partial relief of symptoms, at best.

Then, of course, the other nasty secret, is that these drugs aren’t a free lunch. When you take them you are courting all kinds of negative effects and iatrogenic illness. Some people develop Parkinson-like symptoms, others become incurably restless and move about constantly, which is very distressing for them and those around them. They suffer from tardive dyskinesia, arguably the real bugbear of the early antipsychotics, uncontrollable movements of the extremities and facial muscles, quacking noises, things that laypeople who are unfamiliar with what’s going on ironically tend to interpret as symptoms of madness. You come across somebody grimacing and shouting coming towards you, you think, oh, there’s somebody who’s mentally ill.

Moore: They don’t realize it’s iatrogenic do they?

Scull: Right, exactly. Then, and this is one of the more striking kinds of things, you look at where modern treatment leaves people. Most of the drug studies have been funded by the drug companies. They operate across national boundaries. The only entity that owns the data and controls the data is the drug company, and they cherry-pick the data. We know that from lawsuits and other studies. 

What purports to be evidence-based medicine is really evidence-biased medicine in a very serious way. Virtually all the major drug companies have been fined billions of dollars and that’s one of the reasons they’re pulling back from research in this area. It’s interesting to see one study, known as the CATIE study, that was funded by NIMH. It was designed to test the comparative efficacy of a first-generation antipsychotic produced in the 1950s. A drug no longer under patent, cheaper, easily prescribed, with newer variants that are variously known as second-generation antipsychotics, or atypical antipsychotics, a very broad class of drugs with different modes of action.

Three of those newer drugs were compared to the original one. Do they work better and what are the effects? I think two striking findings emerged from that research. One is the new drugs were no better than the old drugs. They had a different side effect profile but that included gaining 30, 40, or 50 pounds of weight. It included developing diabetes or heart disease and a whole array of life-threatening side effects. But the other thing that I thought was striking about that study, and it was confirmed independently, was that between 67% and 82% of the patients, depending on which drug they were on, dropped out. They dropped out for two reasons: because the damn things weren’t working in their case, or because the side effects they were experiencing were intolerable. That conforms with what we know from other research.

When people talk about the drug revolution, note that between two-thirds and four-fifths of patients on these drugs don’t find them tolerable or helpful. That’s a very damning finding, I think. That’s not to dismiss the cases where the drugs help, but what it does throw up is a very large caution flag if you’re a patient. There isn’t something better on offer, but what’s on offer can be a poisoned chalice all too easily. And on top of that, the drug companies, starting in about 2010, announced they were pulling out of this business altogether. They’ve made their billions upon billions of dollars. They didn’t see any obvious future targets for new drugs, and there were much more profitable alternatives for research that they could put their research folks to work on. So that’s rather disturbing given that we’re stuck with a bunch of, once again, desperate remedies of very doubtful efficacy. Efficacy for some, but only for a minority.

Moore: Again, something that leapt out reading the book was that you expected to see a big transition from the, frankly, barbarous practices of the past to modern developments in neuroscience and genetics and a greater understanding of the brain. But actually, the vestige of the harm of treatments still comes across in the way that modern psychiatry is done, though much less obvious and less apparent.

Scull: Yes, it’s not as dramatic as a lobotomy obviously, especially when done with an icepick through their eye socket, but yes those do persist. People sometimes ask me, could this repeat? I don’t know the answer yet, but I’m deeply suspicious when I see things like deep brain stimulation, another brain operation. When that has been put to a controlled trial test run by the manufacturers of the devices who wanted to find they were effective, those trials were aborted because the results were so terrible. Yet, there continue to be both media stories about this magnificent new treatment and publications in things like the American Journal of Psychiatry touting it as a possible remedy for the depression that afflicts 10%, 15%, even 20% of Americans.

I saw about a year ago in the Washington Post a case of one of the great plagues of 21^st Century America besides all the gun violence. It is the opioid epidemic fueled by the Sacklers and their minions. This was a patient with drug addiction who is being treated with this brain surgery, seven hours of it. It was a miracle new cure for addiction. My God.

Then there is ketamine, Special K, a party drug. People take it at parties because it changes their mood in the short run. If they are unlucky, it makes them psychotic. If they’re not, it wears off then they do it again and you become habituated. That’s the sovereign new remedy as claimed in some quarters for depression, even though the scientific evidence for it is thin, if not, nonexistent.

The new vogue for psychedelics, magic mushrooms, LSD and so on. Again, a fad is now on offer. You can get ketamine in infusion clinics all around the country, people who have been used to treating cancer patients now have this whole new group from which they can make a profit and people flock to them. Even though, once again, there’s very little evidence in their favor. There’s some but if you do a 30-day study of depression and you’re mucking with somebody’s mental state, they may well interpret that in the short run as an improvement. Come back in a year or two years and let’s look at what the data show, and we have none of that data. Yet, here we go again, another cycle of “breakthrough.”

I’m afraid medical journalists have a lot to answer for in this regard. I mean, when lobotomy was introduced, the Houston Post said it was as easy as removing an abscessed tooth. Well, it was simple but it wasn’t safe, it did terrible things to the person who got the operation. I think being vigilant about these promises of great breakthroughs is really a responsibility that lies with all of us and to expose the fact that there isn’t much in the way of reliable information to support these often very drastic interventions.

The deep brain stimulation, for example, the number of patients who suffer from serious, serious side effects from the surgery is extraordinary. Yet, the enthusiasts continue to peddle this, and I’m just shocked and appalled I have to say.

Moore: The epilogue to your book is entitled “Does Psychiatry Have a Future?” What did your four decades of research leading up to this book tell you on that question?

Scull: It is a very difficult question to answer completely. We haven’t really talked about it but one of the stories that I mentioned at the very beginning of our interview is the collapse of the asylum and what that was fueled by. It was supported by both left and right ends of the political spectrum but for opposite reasons. It led to the abandonment of any pretense of public psychiatry here and the abandonment of people with serious mental illness.

There were no alternatives created, no sheltered accommodation, no attempt to meet the social needs of people who had a hard time competing in the marketplace. It wasn’t driven primarily by psychiatry. It was driven by the concerns of politicians, by budgetary concerns and development of the vestiges of the welfare state that provided some minimal level of survival for people chucked out into the streets. Psychiatry didn’t create that situation but it didn’t protest for the most part as this happened. It preferred to go after milder kinds of mental disturbance and treat those.

The seriously mentally ill were a standing reproach to the profession because they didn’t have good weapons to deal with the problem and they were deeply unattractive patients. They often weren’t grateful. They often opposed what was happening to them, they regarded it as destructive. But as well, they had no money, so in a society dominated by the market those are people who go to the wall.

Our approach to mental illness has veered from a brainless psychiatry after the war when Freudians were dominant and didn’t pay any attention to anything physical to a mindless psychiatry where we pretend, “Oh, there’s nothing here like trauma or other social setbacks that might have some role in somebody becoming depressed or becoming psychotic.” It seems to me that if psychiatry is going to move forward, it has to stop thinking that that’s the answer.

$20 billion spent under Tom Insel when he headed the NIMH led nowhere, as he has confessed. At best, there ought to be continuing basic research, this is a very complicated problem to solve. But in the meantime, we also need research into how best we can make life more tolerable for these patients and their families and how we might be able to help them avoid cycling from the gutter to the flophouse to the jail and back again.

It’s quite remarkable the way in which in some ways we’ve moved back to the situation that existed before the asylum was created. The largest places of treatment for the mentally ill in inpatient settings are the LA County Jail, the Cook County Jail in Chicago and Rikers Island in New York. That’s an indictment of the system, it seems to me.

If psychiatry is going to have a future, it has to start recognizing the social and the psychological dimensions as well as continuing to look to see what, if anything, biology contributes. In some sense, as I argue in those book pages, this whole separation of the biological and the social or the psychological is severely misplaced. One of the things that define us as a species is that our brains aren’t in a fixed state at the time of our birth. Our brains are remarkably plastic and they are enormously complicated things. We don’t even understand the brain of a fruit fly, let alone the brain of a human being.

We know a little bit more, we understand about neurotransmitters and we understand not everything’s electrical as they thought 75 years ago. But our understanding is enormously primitive. Mostly what we’ve learned is how damn complicated this thing is in our head and so, because it’s plastic, it responds to the environment we’re in. What that means is over time your brain absorbs and is transformed by your experiences. That means this whole separation of mind and body is a false one.

Academic psychiatry has to break with that because that’s the group that trains the next generation. The problem there is that if you’re building a career in academia, particularly in the sciences and the medical sciences, it all depends on attracting grant money. If you have lots of grant money you can get away with almost anything. People at the very top of child psychiatry and psychiatry in general took millions of dollars in drug company money and hid it. When that was revealed, the institutions gave them a slap on the wrist and that was that.

Doing social research is politically very dangerous because you might say, “inequality, racism, trauma, these all are vital, and they have to be addressed if we’re going to move forward.” Politicians don’t want to hear that on both sides of the aisle, I’m afraid. There’s no way to build a career that way. You can’t get grant money and if you do get it, it’s very limited. Whereas your colleagues who are in genetics and neuroscience it’s “here, have millions and millions.” You can publish lots of papers because you can parse that stuff in salami slices so that you get lots of publications and you move up the career ladder. You are the people that dominate.

Do I think things could change a bit for the better? They might, I think there are enormous obstacles to that and that’s a distressing end to the book. I don’t have a happy ending to talk about but I do think there are some possibilities. I think politically and given academic politics and academic careers, I’m rather skeptical. I sometimes do grand rounds with psychiatrists in training and at least they start out, in many cases, with the right values. They know if they encounter problems, they’re aware that there isn’t a pill for every ill and that they’re not going to be able to solve things simply with drugs. I suspect they get worn down when they get out in practice.

Again, if they’re going to make a living, they have to prescribe. That’s the only thing that generates income for them so they are also rather trapped. Even if they think underneath they know better, it’s very hard for them to act on those beliefs.

We face a very difficult future. There have been more than 200 years with some halting progress and lots of blind alleys and lots of dreadful mistakes. I’m not sure we’ve finished with those blind alleys and mistakes.

Moore: It sounds like psychiatry should move away from a purely medical view and towards a sociological view.

Scull: I think there’s room for both. I really would be very surprised for the most extreme kinds of mental illness, the sorts of things that lead people to be institutionalized, I’d be surprised if there weren’t some biological component to some of that. I’d also be even more surprised if that were the whole story. I hate to seem like the proverbial liberal who wants a middle course here but it does seem to me that you don’t want to abandon that kind of research entirely. But after 40 years and no therapeutic payoff, no greater understanding of the origins of each of these conditions, whatever they are, maybe it’s time to adopt a more eclectic broad-based approach to trying to do things.

In the meantime, given that you have no cures to offer, you ought to be working out what is the best thing you can do to ameliorate the suffering of individuals and their families because, with the institutionalization, a huge burden fell back on families. 

Organizations like NAMI that were not organizations of patients, they were organizations of patients’ families, they kind of embraced the biological. If you’ve been told you were frozen parents who hated your offspring and had caused them to become mad, then somebody else came along and said, “it’s not your fault at all, it’s the chemical soup in the brain, and here we have a pill that will affect the serotonin levels and then they’ll be fine,” which would you embrace? Of course, you’d embrace the one that said this was nothing to do with you, it’s not your fault, and here’s something modern medical science has done that can alleviate the situation.

It explains why, when budget cuts happen when states have to deal with a fiscal crisis, which they do periodically, resources for the mentally ill are often on the chopping block. They are among the first things to go. Years ago, in 1950, about 30% of New York State’s budget went to mental hospitals. I guarantee you that 30% of New York State’s current budget doesn’t go to mental illness. Then the question is, what substitutes for it? Really, it’s malign neglect. I was going to say benign neglect, but there’s nothing benign about it. It’s malign, it’s malicious, it does terrible things to people’s lives and yet it’s enormously difficult to see how we’re going to move forward successfully from the sort of neoliberal environment we exist in wherein if you’re incapable of competing in the marketplace then you’re so much garbage, so much social rubbish, you almost don’t exist.

Moore: Was there anything else that you felt important to share with the listeners?

Scull: I did talk a little bit about the disproportionate treatment of women, that’s also true along racial lines and that’s something we haven’t mentioned. You can see it across time. In the south, when mental hospitals were built pre-Civil War, black people were kept out. There was no reason to waste money on slaves.

When the hospital system expanded in the late 19^th Century, either one of two things happened; black patients were segregated and separated or separate asylums were built for the “colored insane.” Separate but equal, of course, means nothing of the sort. It’s separate, all right, but it’s deeply unequal. If mental hospitals for white patients were often hellhole snake pits, for black patients they were even worse. One can trace this all the way to the present.

We’ve talked about the ejection of patients into a community with no real effort to supply the necessary social support and the cycling of patients into jails. That, again, disproportionately affects blacks and especially black males who are seen as distinctly threatening. In the LA County Jail, for example, in the county, about 11% of the population is African American. In the prisons, it’s about 30%. Of those diagnosed with serious mental health problems, it’s about 45%. You can see that historical trajectory that we’ve talked about being replicated again in the present.

Moore: Thank you, Andrew. I’m sorry we could only just scratch the surface of the book. For people listening, I really urge you to go and read it. It is fascinating. It’s horrifying in parts. It’s forensic. It talks about the characters of the story, so rather than just an overview it talks about the key opinion leaders who set the stage for the changes to come. 

Scull: Thank you. This is very much a book I’d like to think is for everyone, not just for people working in the mental health professions. We all experience mental illness, either ourselves, in our family members, or among those dear and close to us. None of us escapes the social consequences of the existence of this kind of suffering. The book is written very much so as to keep the reader drawn into these things and to assist in understanding them as much as I’m capable of doing in as thorough fashion as I can in the space I have. I appreciate all the kind words and I hope indeed people do read the book.

 

 

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