On Your Mind podcast, hosted by Timothy Hayes, speaks with Robert Whitaker about the “The Hoax of the STAR*D study on Antidepressant Effectiveness.”

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That was the result publicized by the STAR*D investigators in their 2006 report on the study outcomes. However, as Ed Pigott and colleagues have reported, in publications dating back to 2010, the investigators violated their own protocol in numerous ways to inflate the remission rate. This past August, they published a patient-level reanalysis, in BMJ Open, that found that if the STAR*D investigators had adhered to their protocol, the true remission rate at the end of four stages was 35%.

Pigott and the authors of the study have contacted the New York Times multiple times since then, asking that the paper inform the public of this fact. Instead, the paper, with this latest article on “facts” about “some of America’s mostly widely used drugs,” once again informs its readers of the fraudulent result.

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Universal DBT in Schools Increases Anxiety, Depression, Family Conflict

In October, Peter Simons wrote about research asking if dialectical behavior therapy (DBT) can actually make kids’ mental health worse.

In recent years, teaching kids “emotion regulation” has become an increasingly large part of teachers’ responsibilities. Universal social and emotional learning programs (SEL) have become commonplace. However, a new study based on dialectical behavior therapy (DBT) finds that the intervention can actually make kids’ mental health worse. Kids became more anxious and depressed after receiving it and had more conflict with their parents.

New Study Finds Connection Between Childhood Trauma and Psychosis

In December, Ashley Bobak wrote about a new study which sheds new light on the profound impact of childhood trauma in the development of psychotic symptoms, particularly in treatment-resistant cases of schizophrenia.

The relationship between childhood trauma and later development of psychotic symptoms has received increasing attention in recent years. A new study published in Schizophrenia Bulletin Open examines this relationship further, specifically looking at cases of schizophrenia that are treatment-resistant. The authors found a correlation between childhood adversity and psychotic symptoms, especially hallucinations. They recommend that treatment for psychosis, which traditionally has avoided trauma-related work, incorporate approaches that directly address traumatic experiences.

The authors, led by Robert Dudley of the Early Intervention Psychosis Service, NHS Foundation Trust, and University of York, write:

Mental Disorder Has Roots in Trauma and Inequality, Not Biology

Allan M. Leventhal, PhD, is the author of Grifting Depression: Psychiatry’s Failure as a Medical Science. In December 2023 he wrote:

Despite the compelling evidence that favors a social/psychological, not a biological/medical approach to understanding and treating mental disorder, the prescription of psychiatric drugs remains psychiatry’s treatment of choice. Mental disorder continues to be viewed by psychiatry, the drug companies, other medical practitioners, the media, and the public as being of biological origin. And in full conformity with this scientifically unsupported belief, the NIMH invests relatively few of its research dollars on studies to expand our knowledge of the psychological causation of mental disorder, instead spending heavily on biological research, which continues to produce very little of value. There is no mystery as to why NIMH’s medical bias is failing to advance mental health care.

For Teen Girls, Rare Psychiatric Disorders Spread Like Viruses on Social Media

Writing in November, Peter Simons covered the paper “Social Media as an Incubator of Personality and Behavioral Ppsychopathology: Symptom and Disorder Authenticity or Psychosomatic Social Contagion?”

Researchers argue that a massive sudden spread of unusual psychiatric problems follows the pattern of “psychosomatic social contagion.”

TikTok’s “sick-role subculture” leads to children taking on the characteristics of rare psychiatric diagnoses, according to an article in Comprehensive Psychiatry. Kids—especially teenage girls—are presenting with self-described Tourette’s, eating disorders, autism, and dissociative identity disorder (DID)—but suddenly, and in a way that doesn’t match how these diagnoses have previously been identified.

According to the researchers, identifying with and glamorizing rare disorders has become a way for teenage girls to express extreme negative emotions in a way that, rather than stigmatizing them, makes them feel part of a community and even feel unique and special. The researchers call it “psychosomatic social contagion.”

Borderline Personality Disorder “No Longer Has a Place in Clinical Practice”

In June, Micah Ingle wrote that researchers from the UK and New Zealand argue that Borderline Personality Disorder should be abandoned as a diagnostic category.

Borderline Personality Disorder (BPD) is a diagnostic category in the DSM-V and ICD-10/11 that has faced constant criticism from various sectors. Critics argue that the term does more harm than good due to the stigma associated with the label and the way it pathologizes responses to trauma.

Researchers have also questioned the scientific validity of BPD since it shares significant overlap with other diagnostic categories. Many suggest that it is time to retire this label.

In a new article, psychiatrists Roger Mulder and Peter Tyrer present a well-informed case against the scientific validity of BPD and highlight the confusion it causes researchers and the clinical harm it causes service users.

DOOCE: A Case Study on the Failure of Psychiatry

In May 2023, J.A. Carter-Winward wrote about Heather Armstrong, who rose to fame as a Utah-based “mommy” blogger who wrote about parenting, life, and depression.

The tragedy of Heather Armstrong’s death is that no one really knows why she took her own life, but I believe I do, and the drug manufacturers agree with me. The same medications were given to me to create “hope,” but, instead, they perched me on that precarious “suicide” ledge more often than I care to remember. Armstrong’s book, The Valedictorian of Being Dead, stands, not as a postscript of the power of emotional states, but as a posthumous testimony of the total failure of American psychiatry.

Heather Armstrong’s life was taken by psychiatry, our society’s blind and mindless capitulation to psychiatry, and our unwillingness to scrutinize their methods of madness, which lead to worse mental health, worse physical health, worse outcomes, and loss. Tragedy and loss.

Our hearts and condolences go out to Heather’s children, family, and loved ones. My hope is that they learn the truth of why she felt compelled to raise that white flag before anyone else is trapped in the same morass as Heather was—the medicalized model of mental health “care.”

Phenomenological Research on Depression Reveals Depths Beyond Diagnosis

From December 2023, by Kevin Gallagher.

Researchers challenge the conventional diagnostic frameworks for depression, advocating for a phenomenological approach that delves deeper into the lived experiences of individuals with depression.

A new study reveals reveals the limitations of current diagnostic methods and research approaches for depression.

Researchers Oskar Otto Frohn and Kristian Moltke Martiny from The Enactlab in Copenhagen argue that current methods often overlook the nuanced experiential aspects of depression, which are crucial for understanding and treating this complex experience. They propose that a phenomenological approach, which focuses on the individuals’s subjective experiences, offers a more comprehensive understanding of depression, thereby enhancing both diagnostic accuracy and therapeutic efficacy.

Psychiatrists Call for Transition to Social Rather Than Biological Treatments

Also from December 2023, by Kevin Gallagher.

With that statement, Helena Hansen, Kevin J. Gutierrez, and Saudi Garcia opened their recent article, “Rethinking Psychiatry: Solutions for a Sociogenic Crisis,” recently published in the journal Daedalus. Their work highlights the theories of Frantz Fanon, who believed psychiatric disorders had a social etiology (cause) and, therefore, the solutions to psychiatric suffering must be social in nature as well.

Letting Go of Lithium

In November, Elisabeth Walter wrote about her journey off lithium.

“I never wanted to take psych drugs. I took them because I was desperate to get out of pain, but not the kind of pain most people associate with psych meds. I had headaches, brain fog, and fatigue. I developed asthma and chronic sinus infections. I visited doctor after doctor until I eventually met with a neurologist. Being a brain doctor, he focused on the headaches. Without a diagnosis, he suggested Paxil, considering I was 17 and that I felt sad sometimes. My sister took antidepressants and my family has a lot of mental health issues, so based on that, I was thrown into the same category.

I took the drug as prescribed and felt amazing. I had more confidence, more energy, and I felt like I was on top of the world within two weeks. I started talking fast, coming up with ideas and creative projects and I stopped sleeping. Everything felt good and connected, and I had theories about the world I never could have come up with otherwise. I felt like I had taken a magical pill to cure whatever might have been wrong with me… until I crashed, became paranoid and landed in the hospital.”

ADHD Drugs Linked to Cardiovascular Disease

In October, Richard Sears wrote about a new study published in JAMA Psychiatry finding that long-term use of ADHD drugs is linked to an increased risk of cardiovascular disease.

According to the current research, led by Le Zhang of the Karolinska Institutet in Sweden, service users are at a 4% greater risk of cardiovascular disease (CVD) for each year of ADHD drug use. The largest increase in risk for cardiovascular disease occurs in the first three years of ADHD drug use. Children and adults see a similar pattern of risk when these drugs are used long-term. The authors write:

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While it was written in response to a legislative initiative in Alaska, Gottstein hopes that it will provide an evidence-based resource for all to use. “I think it presents compelling evidence for abolishing unwanted psychiatric interventions in favor of non-coercive approaches, such as Soteria Houses, peer respites, Open Dialogue, warm lines, the Hearing Voices Network, emotional CPR (eCPR),” and so forth.

Last year, Gottstein explained, as the Alaska legislature considered bills to implement a “Crisis Now” initiative, which was part of a settlement over the state’s illegal detention of people waiting for court-ordered psychiatric evaluations in emergency rooms and jails for an extended period of time, it decided to require the state to submit a report to the legislature about aspects of Alaska’s mental health system, including keeping track of patient injuries and how well the patient grievance process works. Gottstein suggested the legislature add “improve patient outcomes,” which it did. Gottstein is a member of the legal subcommittee providing guidance to the “advocacy team” that is expected to make decisions about what will go into the report submitted to the legislature.

The white paper describes psychiatric incarceration and forced drugging as violence perpetrated against psychiatric patients that violates international law under the United Nations Convention on the Rights of Persons with Disabilities (CRPD). While the United States has not ratified the CRPD, the papers argues that Alaska’s mental health program should not violate international law.

“I see the white paper as the culmination of my 40+ years of advocacy for people diagnosed with serious mental illness and subjected to psychiatric incarceration and forced drugging, compiling much of what I have learned into this one document,” Gottstein wrote in an email. “It presents the compelling evidence our so-called mental health system is massively counterproductive and harmful, reducing recovery rates from a possible 80% to 5% and reducing life spans by 20 years or so. Then it presents non-coercive alternatives with the overriding theme of asking people what they want; what they would find helpful, which is heretical in the current system. It is the citation of evidence and authority all in one place (with links) that I think makes the white paper so potentially useful around the world.”

Gottstein added: “The report is also required to make recommendation on the practical ability of patients to avail themselves of those rights. The white paper addresses this issue with the obvious point that the legal representation of people accused of being mentally ill and as a result a danger to themselves or others is totally ineffective and the most important step to take for patients to be able to avail themselves of their rights is effective representation.”

However, Gottstein doesn’t think the other members of the legal subcommittee and advisory team will be receptive to the evidence presented in the white paper.

“I expect they will want to largely ignore this and the other issues raised in the white paper,” he wrote. “The legal subcommittee and advisory team has representatives from the Alaska Public Defender Agency, which represents almost all the psychiatric respondents, the psychiatric hospitals, and the court system; NAMI (the National Alliance on Mental Illness); Adult Protective Services; and the Public Guardian, all of whom are invested in and support the current coercive system. I told the legal subcommittee and advisory team when I submitted the white paper that if the report is to seriously meet its charge it needs to grapple with the issues raised in the white paper. I doubt they will, but I will be pressing them and then the Alaska legislature to do so.”

Gottstein added: “I have gotten to the stage in my life where I am no longer able to carry PsychRights-type litigation by myself the way I did when I defended psychiatric respondents at the trial court level, making a record for appeal, and then taking them to the Alaska Supreme Court where I won five cases holding Alaska’s coercive psychiatric regime illegal in various respects, including being unconstitutional. However, as my new hero, Cherene Caraco of the Promise Resource Network in Mecklenberg, North Carolina says, ‘There is no alternative if there is no alternative,’ and I am now focusing my efforts joining with many others on creating such non-coercive alternatives.”

He and others are pursuing this goal through the ongoing work of the International Peer Respite/Soteria Summit. “Independent of that,” Gottstein wrote, “the purpose of the white paper is that it can be useful in efforts around the world to end unwanted psychiatric interventions.”

In addition to his legal fights against forced treatment in Alaska, Gottstein helped create several alternative programs in Alaska, including a Soteria House that operated from 2009 to 2015. In his book The Zyprexa Papers, he detailed how his litigation efforts ultimately led to a court case in which Eli Lilly threatened him with criminal charges for obtaining and releasing documents that told of how the company had hid from the public evidence of how its antipsychotic drug could cause diabetes and other metabolic adverse events.

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During the past month, have you often been bothered by feeling down, depressed or hopeless?

During the past month, have you often been bothered by little interest, or pleasure in doing things?

An answer of yes to one of the two questions yields a positive result requiring “further evaluation.” If a subsequent assessment determines that the woman is depressed, she may be treated for the condition, even though prior to the screening she might not have self-identified as suffering in this way.

In the United States, such perinatal screening is widely recommended. The American Psychiatric Association (APA), the American College of Obstetrics and Gynecologists (ACOG), the United States Preventative Services Task Force, and the Agency for Healthcare Research and Quality (AHRQ) all promote it as an evidence-based practice.

According to the AHRQ, which is part of the Department of Health and Human Services, it provides a proven benefit: “Depression during pregnancy can raise the risk of having a low–birth–weight baby and premature birth. Screening pregnant women for depression enables health professionals to initiate services that can prevent later problems for both the mother and baby.”

However, other national task forces, most notably in Canada and the U.K., have come to an opposite conclusion about the merits of perinatal screening. The U.K. National Screening Committee concluded in its 2019 review that “there was not enough evidence that such screening programmes were of benefit to women and children,” and that, in fact, they could do harm. False positives could lead to unnecessary treatment, and even if the screening “correctly identified [women] with mental health problems,” it could prove harmful to the majority, the committee wrote.

Such is the debate around perinatal screening. There is disagreement about whether it provides a benefit or does more harm than good. That debate extends to whether the treatment offered to those diagnosed with depression is “effective.”

This debate, in a particularly extreme form, burst into the news a few weeks ago when a Massachusetts woman, Lindsay Clancy, strangled her three children and then tried to kill herself. News articles told of her serious “mental illness,” and of how postpartum depression needs to be recognized and treated—a message to the public that screening for this “illness” is helpful and that there are effective treatments for it.

However, Clancy’s defense attorney quickly turned that narrative in a different direction. He told of how she had been getting intense psychiatric care for the past four months and had been prescribed 13 different psychiatric medications during that time. This left a question hanging in the air: was it the treatment, rather than the “disorder,” that prompted her homicidal behavior?

The different recommendations by the three task forces, and the public attention drawn to postpartum depression by the Clancy case, raise an obvious question. Why does the U.S. describe perinatal screening as providing a proven benefit, while the task forces in the U.K. and Canada see no evidence of such proof? How did they come to such difference conclusions when the research literature to be reviewed is the same?

This exploration of “evidenced-based” psychiatry also leads to two follow-up questions.

First, how do perinatal women experience this formalized inquiry into their mental health?

Second, what opportunities are lost when it is a medical narrative that governs perinatal care? Instead of viewing distress during this period as a “mental illness” located within the woman, what social treatments and policies might be adopted if the distress was seen as arising from the environment? The latter would involve investigating the “social determinants of health.”

Medical Theories and the Rise of Screening

It has long been noted in medical writings that emotional difficulties may arise during pregnancy and following the birth of a child. As Robert Sparks wrote in Sadness and Support: A Short History of Postpartum Depression, Hippocrates devised a hypothesis in the fourth century B.C. that subsequently “survived for over a thousand years. He proposed that lochial discharge—the fluid that comes from the uterus after birth—if suppressed, could flow to the head and result in agitation, delirium and attacks of mania.”

More than 1500 years later, a 13^th-century female physician, Trotula of Salerno, came up with an equally fluid hypothesis. In her treatise Passionibus Mulierum Curandorumon (i.e. The Diseases of Women) she wrote that “if the womb is too moist, the brain is filled with water, and the moisture running over the eyes compels them to involuntarily shed tears.”

A further review of medical history could produce dozens of such pronouncements throughout the centuries. The understanding that drives screening today derives from the third edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders (DSM) published in 1980, which conceptualized depression as a brain disease.

Prior to this time, depression was understood primarily to be an episodic disorder, which often arose from difficulties in life and could be expected to subside with time. The emotional lability many women experienced during pregnancy and postpartum could, for the most part, fit within that concept of “normalcy” in response to the environment. Then Prozac was introduced in 1987 as a breakthrough drug that could fix a chemical imbalance in the brain, and the depression-is-an illness boom was on.

As the SSRIs came to market, manufacturers of the new drugs, in concert with the APA, ran “public education” campaigns informing the public that depression was a brain disorder that was “underrecognized” and “undertreated,” and that it could be “fatal if left untreated.” In 1991, the APA helped organize the first “National Depression Screening Day,” with Eli Lilly, the maker of Prozac, one of the funders of the event. A non-profit organization, Screening for Mental Health, formed to organize these annual events, which have been held in October ever since during “Mental Health Awareness Week.”

With this new “disease model” taking hold, societal use of antidepressants steadily increased, and this was particularly so among women. Prior to 1987, fewer than 3% of U.S. adult women took an antidepressant. Three decades later, nearly 20% were doing so.

The increase in antidepressant use in pregnancy is of an even more pronounced sort.

The Edinburgh Postnatal Depression Scale (EPDS) was released in 1987, just as Prozac was coming to market, and today it remains the mostly commonly used questionnaire for perinatal screening. Much like Pfizer’s Whooley questions, it sets a low bar for a positive result. There are ten questions, each one scored from 0 to 3 points, and screening studies typically use cutoff scores from 10 to 13 to identify those with depression.

Here are two of the ten questions:

Given that even scoring a 1 on every question can lead to a “positive” result, it is easy to see how its use could spur an increase in the diagnosis of depression in perinatal women and contribute to an increased use of antidepressants during pregnancy. Another instrument often used is the Patient Health Questionnaire-9 (PHQ-9), which asks similar questions and scores answers in the same 0 to 3 manner.  On a scale of 0 to 27, a score above four is seen as evidence of “mild depression,” with higher scores categorized as moderate and severe depression.

Prior to Prozac, and the introduction of such rating scales, antidepressant use during pregnancy was quite rare among U.S. women (less than 1 in 300). This figure rose to 8% of pregnant women by 2008. Rates of antidepressant usage during pregnancy are lower in Europe.

In the U.S., much of this exposure to antidepressants results from women becoming pregnant while on the medication. A study of 340,000 women who gave birth from 2006 to 2011 found that 6.5% used antidepressants during their pregnancy, and that 4.4% had been on the medication before becoming pregnant (prevalent users), and another 2.1% were newly prescribed an antidepressant during the nine months (incident users.) 

The “Medical Evidence” For Screening

 The opposing conclusions drawn by the U.K., Canadian, and U.S. task forces reflect a diversity of perinatal screening recommendations in developed countries around the world. International guidelines disagree regarding the best time to conduct screenings, who should conduct it, what screening tools should be used, and what the follow-up and referral pathways should be post-screening.

The variation tells of a glaring hole in the evidence base for perinatal screenings. The premise of perinatal screening is that undiagnosed depression can be identified and successfully treated. Yet, even though it has been promoted for more than two decades, there has never been a randomized clinical trial of good quality that compared outcomes in “screened” and “non-screened” cohorts, with depressed patients in both groups provided the same “usual care.”

“That’s the only scientific method that would allow you to tease out the effect of screening alone,” said Eddy Lang, co-chair of guidelines issued by the Canadian Task Force on Preventive Health Care (CTFPHC) and head of emergency medicine at the University of Calgary. “There are many studies that combine screening with intensive interventions following positive screens, [but] that’s a different question. The question of just the screening by itself: Does that, in and of itself, make a difference? There we need  randomized controlled trials.”

Maternal depression and birth outcomes

There is agreement in the medical community that maternal depression raises the risk of adverse outcomes for mother and child. Antenatal depression is associated with an increased risk for premature birth and low birth weight. Postpartum depression is associated with adverse cognitive and developmental outcomes for children, which are thought to be mediated through impaired mother-child interactions.

There are two critical “evidence-based” questions specific to perinatal screening:

1. Can the screening tools identify depression with a high fidelity and low number of false positives?
2. Is there evidence that treatment of depression in perinatal women is effective? In particular, are there studies that show that antidepressants are effective in pregnancy and the postpartum year?

Screening tools: the problem of false positives

While women are said to be at increased risk of depression during the perinatal period, prevalence studies do not find that to be necessarily so. A survey of more than 14,000 women in the United States of childbearing age determined that the 12-month “period prevalence” of depression was 8% among pregnant women, 9% among postpartum women, and 8% among non-pregnant individuals.

The usefulness of the EPDS or any other perinatal screening tool depends on how accurately it can identify women who meet DSM criteria for depression (true positives) and minimize the number of false positives—women who score as depressed even though they are not. Both the U.K. and Canadian task forces told of how the EPDS and other screening questionnaires could produce a significant number of false positives, which mitigates their usefulness.

In its 2022 review, the Canadian task force calculated that if the prevalence of depression in a cohort is 8%, screening 100 women with the EPDS will result in 5 true positives, 5 false positives, 87 true negatives, and 3 false negatives. While the 5 true positives would potentially stand to benefit (if subsequent treatment was more effective than usual care), the 5 false positives would be exposed to further assessments of their mood and possibly unnecessary treatment, and thus be harmed by exposure to its adverse effects.

Research is needed, Lang said, to assess this benefit/harm ratio. “It’s not sufficient for us, from the task force standpoint, to just identify more patients, and to catch more people, and to have more positive screens, unless you demonstrate that you can improve outcomes that are important. So less depression, less hospitalization, fewer suicides. Unless you can show that, you haven’t met the bar for making a recommendation that you would apply to a wide population.”

Indeed, he said, such research could tell of how screening leads to worse outcomes were it to show that “more people who are screened end up on medications, end up taking time off work, end up with a lower quality of life, while those who weren’t screened have less depression and a better quality of life because they never went down that rabbit hole of false positives and overdiagnosis.”

In lieu of formal screening, the Canadian task force recommended that health care providers simply ask their patients about their well-being as part of usual care. “That would be an important part of care,” said Barbara Mintzes, a former public health professor at the University of British Colombia, who is now at the University of Sydney School of Pharmacy. “But that’s different from giving them these screening questionnaires, and making a decision, based on the screening questionnaire, on what they’d do next.”

The U.K. screening committee came to a similar bottom line. With the use of the EPDS, “A high proportion of women with a positive screen referral for a full psychological assessment are likely not to have major depressive disorder.” An editorial in Lancet stated that this high false positive rate could do significant harm:

“This situation is potentially dangerous. Results of qualitative studies suggest that women are extremely concerned about depression screening, about the stigma associated with a diagnosis of depression, and that a positive result might lead to an automatic social service referral, and potentially removal of their baby.”

The U.S. task force, in its 2016 report, similarly found that even if a screening used a cutoff score of 13 on the EPDS scale, from one-third to more than half of the positive screens would be false positives.¹ However, in contrast to the U.K. and Canadian task forces, the U.S. task force dismissed “false positives” as a significant drawback. “The USPSTF found adequate evidence that the magnitude of harms of screening for depression in adults is small to none,” it wrote.

Effectiveness of screening + treatment

The second question that arises from screening protocols is whether treatments of perinatal depression are effective. If a screening helps identify “unrecognized” depression in perinatal women, this provides a benefit only if the usual treatments—psychotherapy or medication—are effective in reducing depressive symptoms (compared to placebo).

The U.K. task force

The U.K. task force, for its part, concluded that the “evidence on the effectiveness of treatments is not good enough to make recommendations at the current time. It is not clear which of the treatments work for different common mental health problems before and after giving birth.”

The one possible exception, the U.K. committee stated, was that there was some evidence that cognitive behavioral therapy (CBT) “is likely to lead to a small reduction in the severity” of perinatal depression.

The U.K. task force did not find any study that assessed the efficacy of antidepressants for pregnant women identified as depressed through screening. However, in a general review of antidepressant exposure during pregnancy, they found that “negative offspring outcomes were reported in all three systemic reviews” of such studies, and that “no study reported the benefits to women or their offspring from pharmacological interventions.”

The Canadian task force

The Canadian task force focused on finding randomized controlled trials (RCTs) that evaluated screening for depression in perinatal women compared to usual clinical care, with depressed patients in both groups provided the same treatment following diagnosis (e.g., no enhanced treatment for the screened cohort.)

The task force found no such study in pregnant women that met this standard, and only one small RCT in postpartum women to evaluate.

That Hong Kong study randomized women either to screening or usual clinical care. Women identified as depressed were then offered counselling or management by a community psychiatric team.

Twenty-nine percent of those in the screened group were identified as depressed, compared to 6% in the usual-care arm. Thus, the screening led to nearly a five-fold increase in the percentage of women treated for postpartum depression. If treatment led to better outcomes for depressed patients, then increased diagnosis of depression in the screened group should have led to better outcomes for the cohort as a whole.

However, the Canadian task force found that it was “very uncertain” that the screening “improved outcomes of interest” for the screened cohort.  Those outcomes of interest included reduction of depressive symptoms, general mental health outcomes, parent-child stress, and marital stress.

As such, with a lack of RCT evidence that perinatal screening provided a benefit, the Canadian task force recommended against the practice.

The U.S. task force

The U.S. task force, in its review of the literature, expanded the inclusion criteria for screening studies to be assessed. It decided that studies “could also include additional treatment elements” for the depressed patients in the screened cohort. This meant that its review would include studies that compared screening + enhanced treatment + usual care to usual care alone.

The U.S. task force identified six studies, five in in postpartum women, that met this looser criterion. Five were deemed fair in quality and one as good. However, none of the six compared usual care in a screened group to usual care in a non-screened group, which was the comparison that the Canadian task force was focused on.

In the six studies, cut-off off scores for a “positive” result ranged from 10 to 13 on the EPDS scale, with 10% to 28% of the screened women identified as depressed. The enhanced treatment in the screened groups included additional training for nurses and midwives in how to best manage depression, person-centered counseling, and improved follow-up care. In one study, the enhanced treatment specifically included CBT.

The U.S. task force concluded that in the five postpartum studies, there was not a meaningful difference in the mean depressive symptoms for the two groups, as a whole, at later follow-up assessments. The difference in mean EPDS scores was less than one point, which the task force noted was clinically meaningless. At a cohort level, screening did not provide a benefit.

However, the U.S. task force did find a small benefit in the subset of patients identified as depressed. “There was a 21 to 33 percent increase in the likelihood of remission or response” for depressed patients in the screened group compared to depressed patients in the usual care cohort.

As for the pregnancy study, although the difference in symptom reduction among the depressed patients in the two groups was not statistically significant, the task force noted that the results “pointed” in the right direction, and thus were seen as providing some evidence for screening during pregnancy.

The U.S. task force also reviewed studies of various treatments for perinatal depression and their potential harms. “The evidence on treatment benefit is primarily for nonpharmacologic interventions (i.e., CBT),” it concluded. “There is evidence of a small risk of harm to fetal health with SSRI use in pregnant women, and there is a lack of evidence on harms of SSRI use in postpartum women.”

With this research in mind, the U.S. task force determined that “with at least moderate certainty that there is a moderate net benefit to screening for depression in pregnant and postpartum women who receive care in clinical practices that have CBT or other evidence-based counseling available after screening.”

Weighing the benefits versus risks

The three task forces pored through the same scientific literature. The differences in their bottom-line recommendations resulted from their different inclusion criteria for screening studies, and their differing assessments of possible harms.

The U.K. and Canadian task forces did not find evidence that screening provided a benefit on any important outcome, either to the entire cohort or to those diagnosed as depressed. In the absence of any benefit, their assessments highlighted possible harms due to false positives and the drain that screening imposes on clinical resources.

In contrast, the U.S. task force minimized the possible harm related to false positives, didn’t consider the drain on resources from screening, and cast a wider net for evidence of efficacy, finding it in studies that provided “additional” elements of care to depressed patients in the screened cohorts. It viewed the evidence through a different lens.

The moderate benefit quantified

Researchers often calculate the “number needed to treat” to describe the efficacy of a treatment. How many patients must be treated with a drug to produce one patient that has a significant response beyond placebo? In this case, the relevant calculation is the “number needed to screen.”

Of the six screening studies reviewed by the U.S. task force, there was one conducted in the United States and it provides data that makes it possible to do this calculation. In the postpartum study, 45% of depressed patients within the screened group had a significant response to treatment, compared to 34% in the usual care group. Here is the calculation that leads to a “number needed to screen”:

• • • There were 1353 women in the screened cohort.
    • 399 screened positive for depression.
    • 217 remained in the study to the end and were treated for depression.
    • 98 of the 217 had a significant response to treatment (45%).
    • If only 34% of the 217 had had a significant response (the response rate in the usual care group), 74 patients would have had a significant response. Thus, screening 1353 women produced 24 additional “significant” responses.
    • Divide 1353 by 24, and the number needed to screen to produce one additional response to treatment is 56.

That is the moderate benefit that the U.S. task force concluded flowed from screening all women in a primary care setting for depression. Meanwhile, a Lancet editorial, which took issue with the U.S. task force recommendation, summed up the evidence base for perinatal screening in this way:

“Routine screening for depressive disorders in pregnancy and post-partum could potentially be harmful. The pregnancy and postnatal period is an opportunity to maximise the health of women and their families. But this needs to be done through sensitive enquiry in the context of a broader conversation about the physical and mental health wellbeing of mothers.”

The Risk of Harm With Antidepressants

While none of the three task forces recommended antidepressants for perinatal depression, in the real world of clinical care it remains a common treatment. Both the U.K. and U.S. task forces told of possible harm from their use during pregnancy.

The scientific literature tells of a long list of possible adverse outcomes for the fetus: miscarriage, spontaneous abortion, severe congenital malformations, cardiac malformations, fetal growth retardation, smaller head size, preterm birth, low APGAR scores, persistent pulmonary hypertension, neonatal behavioral symptoms, neonatal seizures, neonatal respiratory distress, mortality during the first year, slower psychomotor development, autism spectrum disorder, developmental and language delays, and higher rates of depression and anxiety.

Meta-analyses of such studies in the literature find that risks may vary according to the type of antidepressant (SSRI, SNRI, or tricyclic), the specific drugs within the SSRI and SNRI class, and what adjustments are made for confounding factors. One comprehensive review reported “odds ratios” for various possible adverse outcomes ranging from 1.0 to 2.5, meaning that there may be very little (or no) increase in the likelihood of such an event at the low end, and more than a doubling at the high end.

As many of the adverse events are rare, the increase in the absolute risk might be quite small. If the background rate for an adverse event is one in 500 births, then a doubling of the risk would put the absolute risk for antidepressant users at one in 250 births. This was why the U.S. Task Force wrote that the “likelihood” of such severe adverse events  is “low.”

However, with so many elevated risks present, the cumulative odds that antidepressant usage will lead to an adverse event of some type could be expected to be significantly higher. There is a hint of this in a 2022 study of Medicaid patients. By age 12, 47% of children whose mothers had taken an antidepressant during the second half of their pregnancy had been diagnosed with a neurodevelopmental disorder, compared to 31% of children without such exposure. Among private pay patients, the respective figures were 25% for the antidepressant-exposed children and 15% for the non-exposed group.²

Perhaps the biggest concern with antidepressant usage relates to the use of SSRIs during the first trimester. Serotonin is known to play an important role in “signaling” the migration of brain cells to different areas of the brain during fetal development, and in rat studies, SSRI exposure has been found to lead to disruptions in this process. Although there is always a question of how relevant such animal studies are to humans, a 2018 study of 98 infants, which was published in JAMA Pediatrics, produced this “key points” summary:

Question: Is prenatal exposure to selective serotonin reuptake inhibitors associated with fetal brain development?

Findings: In this cohort study including 98 infants, significant gray matter volume expansion was noted in the amygdala and insula, as well as an increase in white matter structural connectivity between these same regions in selective serotonin reuptake inhibitor–exposed infants, compared with infants exposed to untreated prenatal maternal depression and healthy controls.

Meaning: In line with prior animal studies, these multimodal brain imaging findings suggest that prenatal selective serotonin reuptake inhibitor exposure has a significant association with fetal brain development.

The most common problem that arises with antidepressant exposure during pregnancy is that up to one-third of newborns suffer “neonatal withdrawal syndromes.” Frequently reported symptoms include respiratory difficulties, irritability/agitation, tremors, feeding problems, and seizures. In a 2022 study, 84% of the reported symptoms were classified as “serious,” and much to the surprise of the researchers, tricyclics were more problematic than SSRIs in this regard.

Advice to Pregnant Mothers

While such risks to the fetus and child have drawn considerable attention, the usual advice to pregnant women is that the risk of untreated depression outweighs the risk of harm to the fetus. This advice stems from “discontinuation” trials in women who, finding out that they were pregnant, were interested in stopping their antidepressant.

In 2006, researchers at Massachusetts General Hospital reported that the relapse rate was 68% in the antidepressant-withdrawn group compared to 26% in the drug-maintained group, a finding that is often cited as reason for pregnant women to stay on their medication. However, critics of this advice note that that it is clouded by a failure to distinguish between drug withdrawal symptoms and relapse.

“They didn’t even consider the possibility of withdrawal—so that’s a major issue,” said Barbara Mintzes, a researcher at the University of Sydney’s School of Pharmacy who specializes in the study of pharmaceutical policy. “There was no tapering plan. They were stopping cold turkey, so the likelihood of withdrawal was very high.”

The discontinuation trials also don’t tell of how well “drug maintenance” treatment works. Studies of real-world patients have found that stay-well rates are quite low, and this appears to be true for pregnant women too.  A study of 85 women who had a diagnosis of major depression before getting pregnant and continued their antidepressants during the perinatal period found that only 18% remained in “remission” during this time; 50% percent struggled with “mild symptoms;” and 32% experienced “clinically relevant” symptoms.

A WebMD article summarized the findings with this headline: “Antidepressants Often Ineffective During Pregnancy, in New Moms.”

In a similar vein, a study of 187 pregnant women who reported pre-existing depression or new-onset depression during pregnancy found that antidepressants did not protect against “self-harm” ideation. Twenty-two percent of those who took an antidepressant during pregnancy reported frequent “self-harm ideation” during their postpartum year, compared to 15% of those who didn’t take such medication.

In the Prozac era, maternal mortality has soared, increasing from 17 maternal deaths per 100,000 pregnant women in 1990 to 26 per 100,000 in 2015. Postpartum hemorrhage is the leading cause of maternal death, and a study of postpartum hemorrhage in women with mood disorders found that it occurred 1.5 times more frequently in those who took an SSRI in the last month of their pregnancy compared to those who were “untreated” for the disorder, a finding that suggests increased antidepressant use could be a causal factor contributing, in some slight way, to the increase in maternal deaths.

Thus, the bottom line in the evidence base: While it is known that antidepressant usage during pregnancy presents risks to the fetus, there isn’t good evidence that these drugs are “effective” in alleviating depressive symptoms or reducing self-harm in the mother, and their use late in pregnancy increases the risk of postpartum hemorrhage. The selling of antidepressants to the American public over the past 30 years has produced heightened risks for the unborn and, it seems, may have contributed to a rise in maternal deaths.

Women on Screening

Surveys of perinatal women typically find that they welcome general inquiries about their mental health, whereas mandated screenings often leave them baffled and fearful for what might follow from the results. They worry about losing their jobs, their children, and the burden of being labeled as depressed or “mentally ill.”

That was what Karen Tabb, an associate professor in the school of social work at the University of Illinois at Urbana-Champaign, found when she surveyed women in Illinois, which is one of several states that mandate antenatal and postpartum depression screenings.

“The implementation of that mandate is oftentimes nothing less than horrific,” she said. “You hear the experience of someone reporting that they’re suicidal and they’re scared to hold their baby. . . . and they’re opening up and sharing this with a clinician. And in many of these health care systems in my state, the protocol is to call 911. The patient is detained, and an ambulance comes, and they do a psych evaluation.”

Such implementation of mandated screenings creates a space, she added, “where people aren’t open and willing to discuss their level of need.”

Bafflement was the first response that Liz Woytus had to a postpartum screening shortly after her first child was born 16 years ago. “You know, your hormones are crazy after you have a baby,” she said. “I kept getting up in the middle of the night because I was getting hot and cold and hot and cold.” On top of that, she was crying. “I don’t think screening a woman after she gives birth in the first 72 hours is wise in anybody’s eyes. Your body’s just going nuts.” A little later on, maybe—“but give me a week or two to figure out what the hell just happened.”

Each of the next two times Woytus gave birth, she was screened for depression. She is, she stressed, “completely neutral” in her attitude toward such screenings. But four years ago, during the birth of her third child at a large teaching hospital, her uterus ripped, and she was in a lot of pain. Yet, a social work intern entered the crowded room with a clipboard and asked her about her mood. Was she feeling anxious or depressed?

“My view is that they could be doing a better job with the screening process—and maybe send in more qualified people,” she said. “First of all, why would you have that conversation in front of family? That wasn’t appropriate.” The likelihood that it would prompt honest responses is slim, she added.

Last fall, a woman described her postnatal depression screening on Reddit, and that triggered a heated discussion about its problems. The woman recalled the questions she was asked:

In response, commenters chimed in with their own stories, describing the inadequacies and absurdities of the process—especially for those already diagnosed with such disorders. As Prior_Crazy_4990 put it, “I can tell you right now I lied my ass off on every single one and checked that I was doing great with life because I was scared of having my daughter taken away if I admitted anything was wrong.”

Which, in turn, prompted Not_Starlight_Kitsun to reply: “I know I lied my ass off on mine due to my anxiety.”

In her survey, Tabb identified other common patient complaints. Women told of a process that was rushed and unprofessional, was ineffective because providers didn’t explain the purpose or uses of the screening tool, didn’t tell patients anything about the results, and failed to provide any follow-up relating to patient depression scores.

Concerns about screening, Tabb said, are even more pressing for people of color and the poor, who are already wary of existing power structures and afraid of losing their child. Black patients felt especially fearful and nervous about answering screening questions because of worries it might lead to a visit from Child Protective Services or harm them in a custody case. “It’s usually a hard thing to talk about, like, I’m not going to go tell somebody because I don’t want DCFS to come,” said one patient, referring to the Illinois Department of Child and Family Services.

“Their perceptions are steeped in reality,” Tabb said.

At the same time, Tabb is not anti-screening, but believes a validated questionnaire, if properly implemented, could encourage a dialogue between patients and their providers about the difficulties and stresses they may be experiencing.

For Woytus, it’s the dialogue part that would be helpful . . . just “sitting down” with someone who could listen, read between the lines, ask the right follow-ups, and nudge things to the fore. “That would be more productive than anything else, because you might find things out about the person. . . and obviously, if you’re doing better mentally, you’re going to take care of the baby better.” 

The Medicalization of Pregnancy and Postpartum Motherhood

In the three task force reports, there is a consensus that it is helpful for clinicians to ask pregnant and postpartum women how they are doing, and that they provide help and support for those are struggling in some way, with referrals to counseling one recommended option. Those who are critical of perinatal screening similarly encourage such clinical care.

However, as critics note, screening recommendations reflect, in part, a “medicalization” of pregnancy, with normal stresses converted into a medical diagnosis—of depression, anxiety, or other psychiatric disorder.

“Often, the problems that can really lead to distress are life problems,” Mintzes said. “You know, that whole side of just framing a lot of things within mental health rather than looking at what’s going on socially.”

She added that conflation of such social-related stresses with “illness” is an example of “disease mongering” that has been promoted by pharmaceutical companies, a topic she addressed in her 2010 book Sex, Lies, and Pharmaceuticals: How Drug Companies Plan to Profit from Female Sexual Dysfunction. Once women with “life problems” get identified as depressed or anxious, then drug treatment may be in their future.

“It’s a very different situation for women at the most severe end of psychiatric disease in terms of decisions about discontinuing drugs or not—versus somebody who might have come into a GP who might have life difficulties that were temporary, where they might not even have met the criteria for a diagnosis for major depression,” she said. “Or they might be at the very mildest end of the spectrum. And they end up on antidepressants.”

Adam Urato, a consulting obstetrician based in Massachusetts who coauthored a 2016 paper, “Making Sense of the Controversy: Use of SSRIs in Pregnancy,” sees perinatal screening in a similar light.

“At first glance, screenings always sound good, and that’s true in medicine, and in healthcare for a variety of things,” he said. But the question that has to be asked: “Are you creating more harm than good when you’re starting to do widespread screenings? And that would certainly apply in the mental-health realm for a variety of reasons.”

One problem with universal screening, he added, is that it casts a wide net in identifying women as suffering from a psychiatric disorder, catching even those who didn’t see themselves as suffering from depression or anxiety. “They came in, they thought they were doing okay,” he said. “But if you check them off in a certain way, then you get labeled with a disease . . .  I really have concerns that what, a lot of times, are natural processes are being pathologized.”

Moreover, he sees perinatal screening in a larger context. The pharmaceutical industry’s influence is undeniable, he said, creating “a pharmaceutical conventional wisdom” that leads clinicians to medicate increasing numbers of people, with the use of antidepressants by women a prime example of that. He regularly cares for women who have become pregnant while on an antidepressant. “The question then becomes: How best to manage that? And that is a common scenario, more common than the primary OB screening and initiating treatment.”

Urato emphasized that, in the real world of clinical care, there is no one-size-fits-all practice to follow. The message to women, he said, should not be “an extreme or 100 percent ‘you can’t do this—you can’t take medication.’” Instead, the focus should be on providing women with information: the risks of going on psychiatric drugs, the difficulties of coming off, the potential consequences during pregnancy, the potential risks to the fetus. “That’s got to be on the radar,” he said.

Georgio Schoretsanitis and Chiara Gastaldon, who conducted the research on neonatal withdrawal syndromes mentioned above, see the challenge in a similar way. “One thing these women should have is access, as easy as it gets, to interdisciplinary care teams that would make it a mission to guide these women through pregnancy,” Schoretsanitis said.

As for perinatal antidepressant use, “there’s no single patient who’s identical to another one,” he said. “You know, every woman has a different history. And if we’re answering this question in a binary way, saying ‘yes’ or ‘no,’ ‘should she’ or ‘shouldn’t she,’ you know, I think this is highly reducing it.”

At the same time, Mintzes and others note that viewing perinatal distress through a medical lens turns societal attention away from the “social determinants of health,” which need to be addressed by social policies. A survey of 215 perinatal women found that two-thirds reported material needs of some type—supplies for baby and family; financial help to pay for housing, food, and utilities; transportation to medical care; and so on. More than half told of needing “social support,” with many new mothers telling of “social isolation.”

Before Mintzes pursued an academic career, she worked in nonprofits in the field of women’s health, where they ran support groups for postpartum women. The chance for new mothers to talk to other women with similar experiences, share stories and strategies—that can be hugely helpful, she said. “And that’s very different from the very medicalized model.”

As might be expected, social policies that provide pregnant women and new mothers with more support have been shown to be effective remedies for perinatal stress. A 2017 study found that something as simple as home visits “can influence postpartum depression in a positive way and could improve mothers’ and infants’ health.”

Most developed countries allow new mothers—and at times fathers—to stay at home for extended periods without needing to go to work, a social policy that eases some of the stresses that come in the postpartum year. Sweden mandates six months for mothers and a month for fathers, a policy that has been found to dramatically improve maternal health, both physical and mental. The U.S., for its part, is a rarity among developed nations for not adopting maternal leave mandates.

Such is the mismatch between what perinatal women say they need and want and what mandated screenings provide.

Is it the Disease or the Drug?

The Boston Globe, in its coverage of Lindsay Clancy’s killing of her three children, has told of how her trial could become a test of how “postpartum mental health is treated.” There are in fact three narratives that are now being presented to the public: Clancy planned the killing in a methodical, cold-hearted manner (the prosecution); she was suffering from postpartum psychosis (the disease explanation); and that it was the drug treatment that is to blame (the defense).

All three narratives begin with the story of a woman who, prior to the birth of her third child, was a loving and caring mother.  She worked as a “delivery and labor nurse” at Massachusetts General Hospital, her colleagues describing her as a “consummate caregiver.” She gave birth to her third child last May, and the first months went fairly smoothly. But in September, her maternity leave was ending, and faced with returning to work, she became so anxious that she sought psychiatric help.

This is when the disease narrative takes hold. Postpartum depression is a common disorder, and in Clancy’s case, it devolved into postpartum psychosis. It is a rare condition, occurring in one to two per 100,000 new mothers, and raises the risk—however slight—of infanticide.

Mothers who kill their children, researchers have found, frequently have “depression, psychosis, prior mental health treatment, and suicidal thoughts.” Given that Clancy was treated for her difficulties, the implication in this narrative is that she was treatment-resistant.

The defense narrative tells of psychiatric care gone amok. Clancy was initially prescribed a benzodiazepine for her anxiety, and that devolved over the next four months into an onslaught of polypharmacy, as she was prescribed 13 psychiatric drugs: three benzodiazepines, (Klonopin, Valium, and Ativan); five antidepressants (Zoloft, Prozac, Remeron, Trazadone, and amitriptyline); a mood stabilizer (Lamictal), an antipsychotic (Seroquel), and three other drugs for anxiety and insomnia (Ambien, buspirone, and hydroxyzine). Her husband worried that she was turning into a zombie, and on January 23, apparently while under the influence of “command hallucinations,” she strangled her three children and then threw herself from a second story window in an attempted suicide.

As the defense makes this argument, it will be able point to scientific findings to support its case. In the very first trials of fluoxetine (Prozac), there were reports that it could induce psychosis, hallucinations, and suicidal impulses. Clinical trials of other SSRIs also told of how they could cause agitation and other troubling side effects and, in 2010, researchers searched through the FDA’s adverse events database for reports of “prescription drugs associated with reports of violence toward others.” They determined that one smoking cessation drug, varenicline, and “antidepressants with serotonergic effects were the most strongly and consistently implicated drugs.”

An Australian researcher, Yolande Lucire, has investigated a number of violent and homicidal acts by people taking antidepressants, and found an apparent genetic link: often the perpetrators have a gene mutation that hinders the usual metabolism of serotonin, and this leads to a toxic buildup of the neurotransmitter in the brain. Studies also have found that SSRI antidepressants may stir suicidal and violent impulses in healthy volunteers, evidence that such acts can’t always be dismissed as due to the disease, not the drug.

The assistant district attorney prosecuting the case has told the court that this is a case of “first-degree murder, and that Clancy acted with “deliberate premeditation and extreme atrocity and cruelty.” The prosecution’s argument is that it wasn’t the disease that caused her act, but simply an evil act of homicide, and to support this contention, it has noted that psychiatrists in Rhode Island concluded in December that Clancy wasn’t suffering from postpartum depression.

The prosecution is putting forth a narrative that supports a charge of first-degree murder, but it is also one that the defense will likely welcome. If it isn’t the “disease,” then how will a jury comprehend how a loving, devoted mother, who had a history as a “consummate caregiver” as a delivery nurse, committed “maternal infanticide?

The case, in this way, will bring public attention to how postpartum distress is treated, and, at the very least, raise questions about the merits of drug treatments as a solution for that distress.

***

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

The post Screening for Perinatal Depression: An Effective Intervention, or One That Does More Harm Than Good? appeared first on Mad In America.

Shield Alert for MFI Member Jim Flannery Who is Being Held Involuntarily in Middlesex Hospital and Forcibly Drugged!!

The post MindFreedom Issues Shield Alert for Comedian Jim Flannery appeared first on Mad In America.

Catherine’s Story: A Child Lost to Psychiatry

In July 2022 on our Family Resources pages, Carol and Russell Stence shared their devastating story of the loss of their youngest child, Catherine, just before her 21st birthday.

“A year ago today, our youngest child died, thanks to the adversarial actions and toxic treatments foisted on her by medical-model psychiatry. By telling her story, we hope to promote systemic change.”

Trauma Survivors Speak Out Against DBT

Writing about the impact of Dialectical Behavioral Therapy (DBT) Rebecca Donaldson, confessional poet, speech-language pathologist, and PhD student in Positive Developmental Psychology, shared her experiences of running the “Stop Dialectical Behavioral Therapy” Facebook group.

“It is really time that the harm in this field ends. To be truly trauma-informed, one needs to understand intersectionality, developmental psychology, and the basic needs that all human beings possess. This population is not attention-seeking or obsessive. They are merely seeking to form an internal working model of secure attachment so that they may one day wander on their own. This population does not need DBT. They need developmentally informed therapy that acknowledges that trauma isn’t just what happened to you. It’s also what didn’t.”

Psychiatry, Fraud, and the Case for a Class-Action Lawsuit

In August 2022, Robert Whitaker wrote about fraud and the case for a class action lawsuit regarding psychiatry’s claims about chemical imbalances as an underlying ’cause’ of mental disorders.

“In terms of harm done by the chemical imbalance lie, whether an antidepressant reduces the patient’s symptoms over some period of time is beside the point. The chemical imbalance story informs the patient that he or she suffers from a brain pathology, which requires treatment with a drug that treats that pathology. That is a diagnostic story that changes a patient’s sense of self and understanding of his or her own mind. Moreover, the treatment is designed to change how the individual emotionally responds to the world—this is an intervention of a most profound sort.

Indeed, the decision to take an antidepressant puts the patient on a different life course. It puts a person on a path of a medicated future, as opposed to the life the person had known before and the life that the person might have if he or she sought some other non-medical form of treatment. In that sense, the decision of whether to take an antidepressant acts as the proverbial fork in the road—two different lives stretch ahead.”

Loss, Grief and Betrayal

Also in August 2022, Mad in America’s Arts Editor, Karin Jervert and publisher of Mad in Canada, Marnie Wedlake, joined forces. In “Loss, Grief, and Betrayal: Psychiatric Survivors Reflect on the Impact of New Serotonin Study” they wrote about betrayal felt by many who have been affected by the myth of the chemical imbalance.

“For six decades, a highly effective propaganda campaign sold the chemical imbalance theory to millions of people all over the world. Whether psychiatry believed it matters little when juxtaposed against the countless lives that have been damaged by the myth of the chemical imbalance.

This widely adopted, societally constructed belief, enabled intolerance of suffering as well as a form of social control. Restricting the full range of emotions that are part of the human condition, through the psychiatric/pharmaceutical paradigm, has created strict rules of which emotions are “good” and which are “bad.” The psychiatric survivor movement brings forth the idea that all emotions, held safely and together, can lead to healing.

If you now realize you are one of the countless lives that have been damaged and you are feeling betrayed and overwhelmed by grief and loss, know that the psychiatric survivor network is here to help you heal.”

The Alternative to Psychiatry Has Been Discovered

Anders Sørensen is a Danish clinical psychologist and researcher and in 2022 he wrote that “The Alternative to Psychiatry Has Been Discovered—We’re Just Not Using It.”

“In the academic debate, the nature of mental health disorders is often described as an enigma, like ‘mental illness is very complex, and we do not understand how or why it occurs’, ‘depression and psychosis are mysteries that we have yet to figure out—incomprehensible mysteries!’, ‘it is so weird that some people develop psychopathology and some do not’. The terminology mental illness, mental health disorder, and psychopathology—which is further defined as the study of abnormal behaviors and experiences—all indicate that some psychological mechanism is malfunctioning when producing the distress, or symptoms.”

Psychiatric Drugs Do Not Improve Disease or Reduce Mortality

In the article “Psychiatric Drugs Do Not Improve Disease or Reduce Mortality,” Mad in America’s Peter Simons writes about the work of psychiatrist Nassir Ghaemi.

“Most psychiatric drugs have not been proven, in properly designed randomized trials, to improve the course of any illnesses they are purported to treat,” Ghaemi writes. “Specifically, they have not been shown to prevent hospitalization or extend life, as many clinicians believe.”

The New DSM Is Coming and That isn’t Good News

In February 2022, author and activist Sarah Fay wrote about the advent of a new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM). DSM 5-TR adds the diagnosis of ‘prolonged grief disorder’ and Sarah explains why this is problematic.

“The newest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) is set to arrive in March. If you aren’t alarmed, you should be.

The DSM is the book from which all our mental health diagnoses come. It’s been with us since 1952 when it had a little over a hundred diagnoses and was virtually unknown. It now offers over five hundred diagnoses that clinicians give out so frequently that 46 percent of American adults and 20 percent of American children and adolescents will receive one in their lifetimes.

The new edition (DSM-5-TR) isn’t getting much press, mainly because the American Psychiatric Association (APA), the private organization that publishes and profits from it, isn’t publicizing it. Why? The previous edition (the DSM-5) sparked a veritable uproar. Criticisms ranged from the authors’ ties to Big Pharma to the way the DSM pathologized normal thoughts, behaviors, and emotions and invented new diagnoses to how criteria were loosened to make disorders easier to diagnose to the fact that political wrangling, not science dictates what is deemed a mental illness.”

Antidepressants No Better Than Placebo for About 85% of People

Peter Simons returned to the subject of antidepressant efficacy in the article “Antidepressants No Better Than Placebo for About 85% of People” posted in August 2022. He writes about a new study reporting that, in clinical trials, only about 15% of people experience a large effect from an antidepressant drug that they would not have received from a placebo.

“Despite some newer arguments that the placebo effect has been increasing over time—thus making new drugs look worse—the researchers found that the placebo effect has remained stable since the 1980s.

“Depression symptoms” measured on common depression questionnaires include bodily responses like sleep and eating, and the drugs’ sedative and appetite effects could account for some of this improvement.

Another explanation is that some people receive an enhanced placebo effect because they can tell, from the side effects, that they are in the active drug group (breaking the “blind” of the study).

Clinical trials also usually hand-pick their participants, searching for those with no other conditions and who are not suicidal. This makes them very different from the individuals most often treated with the drugs in real life.”

Roll-out of 988 Threatens Anonymity of Crisis Hotlines

Rob Wipond is a freelance journalist who writes frequently on the interfaces between psychiatry, civil rights, policing, surveillance and privacy, and social change. In January 2022, he wrote that the “Roll-out of 988 Threatens Anonymity of Crisis Hotlines.”

“But after another year of freedom of information appeals processes, internal NSPL meeting minutes newly obtained by Mad in America, along with recent federal reports, are still more controversially revealing: As the 2020 Mad in America article was in development, the NSPL began holding internal discussions about call tracing. During these meetings, members of the NSPL’s own Lived Experience Committee passionately criticized the call-tracing policies and practices—leveling many of the same criticisms that would get raised in the article. In response, Vibrant Emotional Health and NSPL leaders promised changes to reduce call tracing.

However, shortly after those meetings, Vibrant/NSPL leaders began lobbying government for direct control over vastly expanded electronic surveillance and geolocation tracking powers—broader powers than even police routinely wield. If implemented, the result will be an unprecedented invasion of Americans’ privacy—the automatic exposure of the personal information and precise physical location of literally everyone who calls, texts, or chats through 988.”

Thomas Insel Makes A Case for Abolishing Psychiatry

Thomas Insel is an influential psychiatrist and was director of the National Institute for Mental Health for 13 years. In April 2022, Robert Whitaker wrote about Insel’s new book Healing: Our Path From Mental Illness to Mental Health and the case for abolishing psychiatry.

“MIA has run two reviews of the book, one by Bruce Levine and the second by Andrew Scull, both of whom offered a more critical assessment. I think it’s fair to say that their reviews reveal how it functions as a work of propaganda.

Personally, I have been mulling over the import of this book ever since it was published. I was focused on a very particular question. Given that Insel opened his book promising to investigate why mental health outcomes in the United States are so poor, would he tell of research, much of which was funded by the NIMH, on the long-term effects of psychiatric drugs?

There was an obvious ethical obligation for him to do so.”

The post Mad in America’s 10 Most Popular Articles in 2022 appeared first on Mad In America.

Some 37 per cent of 12-to-18 year-olds now claim to have been prescribed antidepressants to treat depression or other mental health conditions at some point during their lives, rising to 43 per cent among 19-to-21 year-olds, a survey has found.

Family doctors said a lack of access to effective psychological therapies on the National Health Service has led to them going against official guidelines and over-prescribing medication.

. . . A GP in Scotland described the situation as ‘terrible, horrific, and heart-breaking.’ They said: ‘Diagnosis is done by mental health nurses, inappropriate medications started in huge doses, lots of use of benzodiazepines and antidepressants (SSRIs). I am finding it unbearable to watch these young lives being destroyed and there is literally nothing I can do, and I’ve tried. There is no access to psychology.'”

Article →

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Back to Around the Web

The post 1 in 3 UK Teens Given Antidepressants, Despite Official Guidelines appeared first on Mad In America.

The authors collected data using an internet survey of 1207 participants. The service users reported numerous adverse effects of using and discontinuing benzodiazepine (colloquially, benzos), including anxiety and uncontrollable anger. Between 80% and 90% of respondents said that these negative effects caused problems with work, social interactions, and freetime/hobbies. 76% of the respondents reported they had never been told that benzos should only be prescribed for short-term use or informed about the risk for physical dependence and harm.

The authors write:

Research has linked long-term benzo use to cognitive impairment. People using benzos for greater than one year have shown deficits in working memory, processing speed, recent memory, visuoconstruction, and expressive language. These deficits may exist when people are actively using the drug, withdrawing from it, and for up to 3 and a half years after discontinued use.

Although benzos are indicated only for short-term use due to their potential for physical dependence and other adverse effects, most of the 100 million prescriptions written each year are for long-term use. This results in what some authors have called “iatrogenic dependence,” a harm caused by medical treatment and service provider incompetence.

Benzos’ potential for causing physical dependence is so pronounced that the Food and Drug Administration (FDA) in the United States issued a statement in 2020 warning of the potential for benzo harm and requiring an updated “boxed warning” about that potential.

The FDA was first presented with the problems surrounding benzos in 2010 when thousands of service users and concerned professionals signed a citizen’s petition to better inform the public of the dangers of benzos. Unfortunately, the FDA addressed the petition in 2015 with refusal and complete denial.

However, a 2020 study released by the FDA showed enough overwhelming evidence for benzos’ potential for harm that the regulatory agency was forced to change its position publicly. The FDA now acknowledges that physical dependence can result from taking benzos for just a few days even when taking benzos as prescribed, that stopping abruptly can be life-threatening, and that the prescription guidelines for benzos do not adequately appreciate their potential for harm.

The current research seeks to understand better the effects of benzo use, tapering, and discontinuation. Citing the FDA 2020 statement reversing their stance on the dangers of benzos and the “boxed warning” added to the drug, the authors assert that psychiatry has a tenuous grasp on the effects of benzos and benzo discontinuation. The current research is an effort to fill this gap in knowledge.

The authors developed a 19-question survey including questions about demographics, benzo use, symptoms, and outcomes. The survey was administered across several large websites related to benzo use, including Facebook and Reddit. The survey was anonymous with safeguards to ensure no more than one response per IP address.

One thousand two hundred seven people completed the survey and were included in the current analysis. The respondents were overwhelmingly female (71%), with many (55.9%) taking benzos together with other drugs, such as antidepressants or antipsychotics. 98.6% of the respondents reported having a current prescription for benzos. 68.4% reported that they took their benzo as prescribed, 22% said they took their benzo mainly as prescribed, and 8.7% reported they did not take the medication as prescribed.

63.2% of respondents had discontinued benzo use, 24.4% were tapering their doses down, and 11.3% were actively taking their full dose. The majority of respondents experienced adverse effects while using, tapering, and after discontinuing benzos, with some symptoms (low energy, anxiety, difficulty focusing, memory loss, etc.) persisting for years.

The majority of respondents (76.2%) reported that healthcare professionals “definitely did not” tell them that benzos should only be used for short periods (2-4 weeks according to the FDA) and that discontinuation may be difficult. An additional 5.6% reported that they were “probably not” warned about these dangers.

Use and withdrawal from benzos were associated with numerous adverse life events. More than half of respondents reported significant negative impacts on their marriage and other relationships (56.8%) and suicidal thoughts or attempts (54.4%) due to their use and discontinuation of these drugs. In addition, 46.8% reported being fired from a job or becoming unable to work. 40.9% experienced significantly increased medical costs.

Benzo withdrawal caused many problems for the respondents in their personal and professional lives. 49.1% reported “enormous” problems with their work-life due to benzo withdrawal, with an additional 19.3% reporting “severe” or worse benzo-related work issues. 48% had “enormous” problems with recreation and hobbies, with an additional 25.6% classifying their struggles as “severe” or worse.

More than half of respondents also reported “severe” or worse problems with social interactions, their ability to take care of their home, and their relationships with their spouse and family. 47.3% reported severe or worse problems with their ability to walk and drive.

Many of the respondents left comments on the survey that the authors sorted into several common complaints. For example, many patients remarked on the difficulty of withdrawing from benzos. One participant wrote:

“If I could think of the one worst possible thing you could do to a person, it would be benzo withdrawal. Beats cancer and Alzheimer’s combined. If I could make it go away by chopping my arms and legs off, I would!”

Many respondents experienced poor treatment by medical professionals, with some saying their doctors outright lied to them by saying overdose and dependence were impossible on benzos. According to the participants’ comments, options to discontinue or taper benzo use were also limited.

The authors conclude:

****

Reid Finlayson, A. J., Macoubrie, J., Huff, C., Foster, D., & Martin, P. R. (2022). Experiences with benzodiazepine use, tapering, and discontinuation: an Internet survey. Therapeutic Advances in Psychopharmacology, 12, 204512532210823. https://doi.org/10.1177/20451253221082386 (Link)

The post Research Explores the Experience of Benzodiazepine Withdrawal appeared first on Mad In America.

How would you describe the state of the psychiatric/mental health system in Spain at the moment? How and where does the biomedical paradigm prevail?
In too many places: in primary care services, when the general practitioner sends to mental health services or gives mediation to anyone who consults for suffering; in mental health services (centers, hospitals…); in institutions of confinement (long-stay centers, prisons, juvenile centers) and in popular culture, which understands that the only correct way to deal with suffering is to diagnose, medicate and hospitalize.

How would you describe the influence of pharmaceutical companies?
It is not very different from the rest of Western countries: they finance studies, give direct aid to doctors, influence training, journalism…. The profits made by pharma are so important that they use all their weapons to ensure that the medicalisation of all life’s problems cannot be questioned.

To what extent are alternative approaches available to people?
There is a lot of information about what is happening in other countries, but very few alternatives. It is interesting—for example, the spread of mutual support groups and the Mad Pride movement. However, there are no alternatives for care outside the mental health system as in other countries.

What needs to change?
At the macro level, there must be a radical change in the way mental suffering is understood and cared for. It should also change the fact that the biomedical system is a dogma, and make room for other ways of dealing with distress. We should stop diagnosing all problems and giving pills to everyone, from children to the elderly.

On a micro level we believe that small changes that make a difference could be: helping people to discontinue psychotropic drugs, respecting people’s choices about the care they want to receive, banning mechanical restraint in public health services, increasing the number of mutual support groups, alternatives to hospitalization.

Why did you seek to form an affiliate of Mad in America? What motivated that decision?
We knew Robert Whitaker, and we had told him on occasion that it would be interesting if the important content published in Mad in America could reach the Spanish-speaking public (hence the “Hispanohablante”).

How and why did you originally launch as Mad in Hispanohablante?
Before launching the project, a group of us—readers of Mad in America, concerned about promoting a change in mental health in our country—were working together on other projects, such as the organization of the VII World Congress of Intervoice in Spain. After that, we wanted to continue working on other projects and we organized ourselves as a collective.

What motivated the decision to become Mad in (S)pain?
After years of traveling, and the appearance of other local affiliates, we thought we couldn’t be “colonialist” and speak from Spain to all Spanish-speaking countries. We focused on what was happening in our country with the intention of leaving space for other projects to emerge in Latin America. And in fact, a short time later, Mad in Mexico was born, and we are very happy about that.

What are the individual “origin stories” of the founders/publishers? What are your backgrounds and involvement in psychiatry?
Some of us are or have been mental health service users, or survivors of psychiatry. Others of us are professionals in health and social services. We are also relatives of people who have had bad experiences with psychiatry… In short: I would say that our shared origin story is that of a group of people involved in pushing for a change in the way mental health is cared for and aware that there are other ways that are more respectful of people.

How did you come to challenge the current mental health paradigm?
I don’t know if we have challenged the current mental health paradigm But we have built a website that offers alternatives, information, and points out the violence that takes place under the cover of the psychiatric system, and that has been important for many people.

How many people are involved in editing and administration? Who is on the team, and who edits the published stories and/or takes care of other tasks?
It has changed over time. We are currently an editing/administration team of seven people. We usually do the tasks between all the members of the team, without differentiating roles. When it is necessary to edit a story, we do it in collaboration with the person who wrote it.

How do you make it all work?
We have fortnightly meetings and we organize together the work that needs to be done: communication with authors, the content we want to prioritize, social networks… and we also share what is happening in the field of mental health in our territory.

You’re all volunteers, and work without funding. Is that correct?
That’s right. None of us in the Mad in (S)pain team receive any remuneration for our work. Nor do we receive any funding for the maintenance of the project. Like other affiliates, we rely on the technical support of Mad in America for hosting the website and access to communication and support tools.

Do you expect to have funding in the future?
We don’t think it is necessary to maintain the project. On some occasions we have thought about it for activities that bring people together, such as the film festival, but never for the development of the project.

How do you feel about being part of the Mad in the World network?
I think it’s wonderful. It is an opportunity to create community, to exchange experiences and to feel that we are many people in many places pushing for a much needed change.

Your logo is “madness, community and human rights.” How would you describe your mission?
We say “madness” because we think it is a word that in our language has much more dignity and comes closer to describing a common human experience than “mentally ill,” and “community” because no one cures anyone and no one heals alone. We can only face the suffering generated by our society together, in common. And “human rights” because we find it incomprehensible that in the field of mental health, fundamental human rights (such as freedom of decision, movement, opinion, etc.) are not respected and we have to point out that diagnosed people are also people with the same rights.

What do you hope to achieve with Mad in Spain in general?
To contribute to a change in the culture of mental health.

And specifically?
To offer information, tools and experiences that demonstrate other ways of dealing with people’s suffering. To point out the violence that is exercised by the mental health system.

In terms of those goals, how important are translations of Mad in America and other global content?
(They) bring readers in our country closer to what is happening and what is being thought in other places. There is a lot of interesting material in research and experience that is produced in English and in our country it is not very common for people to read in English.

How about content specific to Spain, such as personal stories from people with lived experience?
We believe it is very important to open up mental health narratives and in that sense, people’s stories have always been a priority for us. In our experience, they have a lot of impact on readers.

And research from Spain?
We would like to publish more research done in Spain, but most of what is produced in our country is done under the biomedical paradigm. In fact there is not much funding for research in our country, and this is a worrying issue. We tend to publish more international research to encourage the production of our own research and the replication of studies adapted to our reality.

What about other content?
Information on medicines is the most visited content on our website. We believe it is very important for people taking medicines to have comprehensive and reliable information about what they are taking.

What type of content would you like to add?
We are working on the production of a podcast that will be released very soon.

What kind of impact have you seen so far? Comments from readers?
We don’t have comments enabled on the website because we don’t have anyone on the team who can handle moderation. But our content is shared on social media, where there are comments and discussions. References to our website have also been included in publications, papers, books, conferences and congresses.

Have you had responses (including negative ones) from the psychiatric sector?
We haven’t had much, to be honest.

Are there other signs of impact?
For a long time we have had an average of 30,000 visits per month. Now, with the change to Mad in (S)pain and positioning issues, we have lost some visits, but we hope to regain our impact very soon.

What additional impact do you foresee for the future? What are your objectives and goals?
That the project is sustained. That new people come to the editing team with new energy and new ideas. We believe that for the project to continue, we need to have younger people and adapt our content to current modes of communication. We would also like to have more authors.

What gives you hope?
That right now mental health is in the public debate because of the effects of the COVID pandemic. We are hopeful that this will help to change things.

The post Mad in (S)pain appeared first on Mad In America.

They’re now working to bring that same awareness—those same a-ha’s—through their efforts with the Mad in America affiliate. They’re spreading the word, illuminating the facts on withdrawal and non-medical conceptions of depression and psychosis. They’re reaching new eyes and drawing new voices into the conversation.

“There are more and more people who see our pages,” said editor Heidi Tommila, “and start to think about their own experiences, also.”

Tommila was on a Zoom call with her colleague Soili Takkala, who founded the country’s first SSRI peer-support withdrawal group and co-founded the NGO that spawned Mad in Finland. The way they see it, getting the word out is half the battle: Once someone has that critical awakening, there’s no quashing it.

“It’s like letting the genie out of the bottle. You can’t put it back, once it’s out. . . because it resonates with people’s actual experience,” Takkala said. “It changes things.”

The Finnish mental health system is famous, in critical-psychiatry circles, for its innovation and implementation of the non-medicalized Open Dialogue model of care. First developed in Western Lapland, the model “is almost nowhere in Finland,” Takkala said. In general, the biomedical paradigm still prevails—and too often, she added, someone might suffer some human struggle and wind up placed on psych drugs.

In her case, she was 20 when she first experienced depression. Three years later, in 1988, her father died by suicide. Sometime after that, she started therapy, then SSRI’s. Over the years she tried to go off them—again, and again, and again—but each time, her withdrawal symptoms were misdiagnosed as relapse. Doctors fed her the “brain chemistry” line. They told her she’d need the drugs for life. Finally, in 2011, she managed to quit them for good.

In recounting her story, she recalled a piece of wisdom a Buddhist meditation teacher gave her. Regarding the psych drugs, the teacher said: “Eventually you’ll get rid of those. And when you get rid of those, then you can help other people with those experiences.”

That, she said, was the key. Helping people.

Just how became clear when, in 2014, psychologist Aku Kopakkala appeared in “Depressing Drugs (Masentavat lääkkeet),” an episode of the Finnish investigative-journalism series MOT. In it, he bluntly criticized the biomedical approach; the next day, he was sacked from his job with a private health care provider. Journalists “had a field day,” Takkala recalled. About a month later, Kopakkala gave a public lecture on the topic—“and I was listening to him, and it felt like a revelation. I finally saw the connection between my own long-lasting withdrawal struggle and this whole sort of ideology.”

From that revelatory moment, the basis for the MIA affiliate was formed. As a writer with years of experience in publishing, she reached out—initially with a book in mind—and ultimately formed the SSRI-withdrawal group. Every other week, they organized lectures and similar events, bringing in Kopakkala and others to speak, in public, about withdrawal and related issues. And an NGO was created: Need Based Treatment (Tarpeenmukainen hoito, or TaHo).

That was November of 2016. A year or two later, TaHo’s web page morphed into MadinFinland.org.

The site is now jam-packed with content: articles on research; personal stories, commentary, diary entries and other blog posts; reflections on “Mieletön psykiatria” (a play on words translated as “insane” or “mindless” psychiatry) by Tommila and an anonymous author with lived experience; stories and information on SSRI detoxification; translations of Mad in America articles and links to MIA global affiliates; a data bank offering info on side effects, instructions for tapering, and other topics; Tommila’s correspondence with a history researcher and philosopher; and links to various sites and resources.

Operating on a voluntary basis, Mad in Finland isn’t run by professionals, Tommila said. Its contributors aren’t trained in journalism. “We’re more like thinkers”—mostly people with stories and insights, doing their best to share them.

Her own epiphany came several years ago, as a young mother on maternity leave. She had just moved to a new location with no friends nearby, and “I was quite alone, quite alone.” In that isolated state she experienced psychosis for four or five days, enduring it at home. A month and a half later, with a resurgence of anxiety, she entered the hospital—already understanding “that it was not what I needed. But I didn’t know where I could go.”

What she knew: “I just need peace, and I need rest, and I need someone to talk with me about my new ideas, my new thoughts that my head was full of. And everything was just taken as symptoms when I was in hospital.”

After five days, she went back home; two months later, she stopped antipsychotics on her own. She had difficulty sleeping. Difficulty with other aspects of living. But she went back to her old job—never planning to stay for long, but proving to herself and her family “that there is naturally nothing wrong with me.” After a year, she quit. That’s when she resolved to work toward positive change. And that’s when, four years ago, she became involved with Mad in Finland.

Being proactive, putting herself out there—none of that is easy, Tommila said. But bearing witness feels necessary. So does the sense of “cooperating and supporting each other” in a community, gradually building, that’s committed to challenging the paradigm.

“There’s many people in mental health who want to do something differently,” said Kopakkala, also on the Zoom call, “but they don’t know how.” In his own case, his life was altered when he spoke the truth eight years ago. But there are more voices in the wilderness these days, he said. Compared with a decade or so ago, many more people are aware of the controversies surrounding mental health and the problems with drugs.

“But practices are not people,” he added. And those need to change, too.

So far, the affiliate has seen some evidence that they are, in fact, reaching more populations and prompting more a-ha’s. Most notably: In 2019, the official Finnish guidelines on depression treatments were updated, citing the dangers of prolonged withdrawal syndrome and advising slower tapering. The change was “just an inch,” Takkala said. “But, you know, a critical inch.” Getting the message through was a triumph—“not the final triumph,” but a significant strike in the right direction.

What gives them hope? For a start: Other MIA affiliates around the world. While each country has its own particular focuses and areas of concern, Takkala said, “It’s wonderful to be part of a global community—and it gives the backup and the background support we need.” It also demonstrates that their efforts and experiences aren’t limited to a handful of survivors.

Another cause for hope: The gradually shifting conversation across media. More and more, challenges to the pharma-driven disease narrative are being published in mainstream outlets; more and more, psychiatric survivors are being heard; and more and more, professionals are opening themselves to alternate views. Moving ahead, Tommila would like to bring them into the dialogue as contributors at Mad in Finland.

But already, in Kopakkala’s own practice, he and his colleagues shun words like “diagnosis.” He explained: “We want to know who they are, how they’re living, what their problems are, how they see themselves. We don’t diagnose.”

Raising his hands to his eyes like spectacles, he added, “We don’t want to see them through glasses. We want them to tell their own story in their own words. . . . And I think we shouldn’t be allowed to put diagnosis on other people—it’s violent, somehow. It’s abuse of power, to diagnose other people. It’s not fair. It’s not fair.” As it stands, instructing those in distress to accept such labels “is self-stigmatizing—and that’s the most terrible thing in this whole power play.”

But at least some shifts in attitude are happening, Takkala said. “At least there’s sort of a wider perspective to different ideas—and at least there are ongoing, public dialogues on psychiatric drug withdrawal via her work with TaHo. The next one, on April 7, will feature prominent neuroscientist and researcher Mark Horowitz.

“And that’s great progress,” Tommila said.

True progress will come when such conversations aren’t even necessary. The best possible outcome, as she sees it: to “not need” Mad in Finland any longer. To not need so many voices raised in protest. To not need a platform pushing against the system, because the system is wholly reformed.

“The change,” she said, “is more important.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Finland appeared first on Mad In America.

Various people have joined or left the group since MITUK was launched in 2018. Currently there are five people, a mixture of professionals and current/former service users, who run the site in a collective manner. There is no designated editor, and no one person is “in charge.” Blogs and other content are posted by each of the five members.

“We describe ourselves as a collective,” said one of the founding team members, who preferred to remain anonymous, on a recent Zoom call.

The desire of several in the group to remain anonymous is unusual among MIA affiliates. In most cases, the editors announce themselves in an “About Us” section on the site. The reason for the anonymity in this case, said one of the editors, is “we get a big backlash . . . it does feel like being on the front lines, being shot at.”

The backlash that they are experiencing may be, ironically, because the public debate in the UK is more robust than in the U.S. and most other countries. As a result, the powers-that-be in the British mental health system may feel more threatened than the powers-that-be in the U.S. and elsewhere.

The UK has long had a critical psychiatry group, and there are a number of prominent UK professionals that have written for MIA—Joanna Moncrieff, John Read, Sami Timimi, and others—who are well known in the UK and beyond. Plus, there has long been a robust psychiatric survivor movement in the UK.

The critics in the UK have presented an alternative to the DSM (“the Power Threat Meaning Framework”), presented evidence-based arguments that tell of harm done from ECT, the relative inefficacy of psychiatric drugs, even over the short term, and industry’s corruption of psychiatric drug research. And they have had an impact—cracks have appeared in the UK’s publicly run National Health Service. This may be easier to achieve in a system in which, most of the time, a DSM code isn’t required, and alternate approaches to care are available in some locations. The NHS practice of psychological formulation even emphasizes the stories behind people’s emotional suffering.

Yet, say the editors of MITUK, the dominant narrative is still overwhelmingly disease-based, and that narrative still dominates both the mainstream media and everyday conversations. Not enough people are aware of the harm that can come from psychiatric care, nor are they aware of the science that shows that. Nor are most aware of the efficacy of non-medical approaches.

In short, said collective member Charlotte Beale: “The medical model has a grip.”

A writer with lived experience, Beale has told her own story on Mad in the UK. As she writes in her opening: “Eight years after beginning ‘treatment’ for an ‘eating disorder’, I was eating worse than ever. Yet three years after quitting that ‘treatment,’ food is a pleasure, not a problem. This is curious, isn’t it?”

In her case, her experiences involved a private clinic, not NHS. But as she explained in the Zoom call, “It was still quite diagnostic.”

With British society as a whole still immersed in the medical paradigm, escaping from it is hard, Beale said. Discovering Mad in the UK’s team of volunteers, all committed to challenging that paradigm, felt revelatory. “I don’t know any other forum like it in the UK. . . . It really was like a breath of fresh air.”

Mad in the UK describes its mission as “Fundamentally re-thinking UK mental health practice and promoting positive change.” Content includes blog posts, artwork, and podcasts; stories from around the web highlighting the latest research and commentary; links to Mad global affiliates; and online events and courses. Currently, the homepage showcases a short film based on a poem by collective member Jo Watson and links to the “Disorder 4 Everyone” online festival (associated with the Drop the Disorder Facebook page).

While Mad in the UK is open to varied perspectives, commenting guidelines stress civility and caution against personal attacks, bullying, and shaming. The stories and blogs are vetted, with Mad in the UK setting a standard for what it will publish: If a blog assumes the validity of the medical model paradigm, the editors don’t see it as suitable for publication on the site. “We are very, very strict about that,” said Beale’s colleague.

The collective has also set a standard for language. They avoid using terms that are the language of the medical model, such as “treatment” and medication. “Recovery” is also problematic, implying that someone harmed by the system should now get to work and heal themselves. “Mental health,” used as a reductionist term for human feelings and emotions, is sometimes unavoidable but does tend to imply an analogy with physical health.

Such standards are meant to change not just the topics being addressed but the ways they’re discussed—given the medical paradigm’s current sway in controlling conversation. Those engaging in such dialogue on Mad in the UK are part of a large, loose, overlapping group of people with a shared critical perspective who participate across multiple efforts and platforms—including, for some of them, Mad in America. Creating an affiliate for the United Kingdom had long been in the back of their minds when, four or five years ago, the idea was proposed by Watson to MIA founder Robert Whitaker.

The website launched on September 6, 2018, run by a collective of 10 on a volunteer basis. Its five current members juggle duties as best they can; editing is done by “whoever’s least busy.” Another member or two, perhaps, might be added moving forward. Also, perhaps, some crowdfunding: They did have a page a while back, and may try again in the future.

At some point, said Beale and her colleague, they would like to devote more time to actively developing the site and eliciting content. Right now, writers tend to reach out on their own, often crossing over from the Drop the Disorder page or other platforms on the web. Quite a few request anonymity; many lack confidence in their writing.

Beale understands their hesitancy, but she knows firsthand the boost they feel once their work is posted. Recalling her first piece for Mad in the UK and the reader comments it generated, she said, “It was brilliant to get published.” In the collective’s view, giving others that same opportunity—lifting them, affirming them, telling their stories and giving them a voice—is vital.

Also vital, said Beale’s compatriot: Showing people what works and what doesn’t. “We are highlighting the catastrophic damage” of so-called “treatments.” They’re highlighting research, and outcomes, and promising alternatives.

There are positive signs of change, they say. Trauma-informed care is gaining a foothold in the UK, as is Open Dialogue. In addition, the Power Threat Meaning Framework (PTMF) has inched its way into the system, lowering bed use and lessening coercive treatment at 14 inpatient wards in London. It is developments like this, that give the MITUK members hope.

Being part of the global Mad community also gives them hope. Sharing their sense of mission with allies and supporters around the world: “It feels, you know, fab,” said the member. And it’s inspiring. “It keeps you going, and I hope we can offer some inspiration, as well. . . . We really, really want to be part of a supportive alliance. That’s the only way things can happen.”

Already, impact is evident in multiple directions. For a start, readership is swelling. “Tens of thousands are coming to Mad in the UK,” Beale said, with numbers also exploding on social media.

But beyond that, another mark of impact—a considerable one—is the blowback itself. The same hateful attacks that prompted Beale’s colleagues to go nameless also, ironically, gives them hope. It’s a sign that “the diagnostic paradigm is crumbling at the foundations,” said the member in question. And when an old order collapses, those who defend it inevitably turn vicious. “There’s always resistance, isn’t there?”

How long that collapse will take, no one knows. Years. Decades, maybe. But one way or the other, “It’s gonna happen. It is happening. It is happening.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in the UK appeared first on Mad In America.

“Sweden and the biomedical narrative,” he said, “are in intimate relation to each other.”

Diagnoses are still required for care. Coercive treatment is still rampant, particularly for forensic patients. The Swedish equivalent of the FDA, the Medical Product Agency (Läkemedelsverket), is still linked with drug companies and funded by the pharmaceutical industry. While alternatives to the biomedical approach exist, they’re still few and far between, provided by private therapists and accessed only by those with the money to pay for them.

And youth, he said, are still being affected. Still being diagnosed, medicated, shunted into long-term treatment, and harmed. He’s seen it from his decades as a social worker, striving to help at-risk children and adolescents—“and I’ve seen, from quite close, the devastating consequences,” said Mattila, founder, publisher, and editor-in-chief of the Swedish Mad in America affiliate. The biomedical narrative “is not helping. Many times, it’s worsening the situation.”

The plight of the youngest is an integral piece of Mad in Sweden’s efforts to challenge the paradigm, as he described in an MIA piece marking the affiliate’s launch in March of 2019. Mattila is motivated by both professional and personal experience, having endured the deaths of his father at age 2, his mother at 13, and his mother’s alcohol abuse in the years between. In his own case, he found healing and meaning in sports. His dream of becoming a professional soccer player “kept my head above the surface”—and after signing his first contract with a Swedish team at age 17, he realized that dream, playing professionally for 15 years in Finland, Sweden, Norway, and Brazil. “I think it saved my life,” he said.

His work with young people has also filled his life with meaning. One in particular, a young woman he first met in her teens, has been a deep and ongoing influence. When she was 15 or 16, her mother had a stroke; around the same time, she was raped, and she lost her grounding in life. Some years later, after a horseback-riding accident, she started overconsuming painkillers and was prescribed psychotropic drugs. Then more psych drugs. Then more: In total, 14 prescribed by 12 doctors.

It’s taken her years to get “on the road again,” Mattila said. Although he no longer helps her in an official capacity, they’re still in touch. Last fall, he texted her just before speaking at a professional conference in Sweden, asking what current and future social workers need to hear.

“And I still remember what she said. She said: ‘Nobody has ever, ever asked her what has happened to her. Not a single time.’ And that’s very symbolic, because that’s the way it is. You only ask the question, ‘What’s wrong with you? What symptoms do you have?’ But you don’t ask: ‘What happened to you? What tragedies did you have? What survival strategies have you developed on the way?’”

All such questions—asked and unasked—drive Mad in Sweden. Originally, Mattila said, he had planned to administrate the site in collaboration with a Swedish nonprofit that he chairs, Föreningen Alternativ till Psykofarmaka (FAP), or the Association of Alternatives to Psychotropics. But after consulting with Mad in America founder Robert Whitaker, he resolved to keep them separate. “It’s two independent organizations with very similar objectives,” he said, noting that many members of the nonprofit also pitch in with the affiliate.

On MadinSweden.org, the wide-ranging content encompasses research articles, blog posts, personal stories, news from around the internet, and more. One tab, devoted to “Culture,” showcases books, movies, and poetry. Another tab, Engagera Dig—or “Get Involved”—invites readers to write a blog post or a personal story, send them a tip, donate, or contribute in some other way.

Everything on Mad in Sweden is written by around 40 authors and edited by a few people coordinated by Mattila, who donates his time. (Other aspects of his career, including books, music, and lectures, are detailed on lassemattila.com.) Right now, there’s no funding; he works to keep costs down. “Everybody who’s contributing is doing it voluntarily, so there’s no money involved in any part” of it.

Going forward, he said, a few more resources might be helpful, allowing him to hire a staffer to perform some administrative work. More article translations would also be a plus, although he’s still “quite keen” on providing the bulk of content in Swedish. “I think that’s the meaning of Mad in Sweden: To make it available to the Swedish public,” he said.

Already, he’s hearing from young people who had never before found a counter-narrative to the biomedical approach—and from those with lived experience who’ve reached out with expressions of gratitude. Before Christmas, he received emails from readers saying they wouldn’t be alive without Mad in Sweden’s work.

“That’s the ultimate response, or feedback, that you can get”—and an incontrovertible sign, Mattila said, of the affiliate’s impact so far. “It’s powerful. . . I am still touched when we talk about it.”

The broader impact he wants and foresees? Altering that all-powerful narrative. How to get there? Language. More and more over the last few years, he’s realized the importance of reshaping how people talk about mental healthcare. Changing the language means changing the narrative, and changing the narrative “will probably automatically change the practice. So I think it’s crucial.”

Current practices, pharmacologically driven, are “the natural result of the biomedical model.” But look at trauma-informed care, for instance. If and when the conversation shifts from disease to experiences, other approaches and interventions can come to the fore—driven by language, and ideas, that acknowledge the humanity of people in distress.

“So that has become one of the main issues for me to work with—to try to change the narrative, and ways of working on it, and talking about it, and thinking about people suffering,” he said.

Reaching the media—combating the “chemical imbalance” falsehood, and conveying different ideas with different terms—is imperative. Too many channels of information, whether public or private, are ruled by special interests, he noted. This is one reason Mad in Sweden has such a vital role to play, offering a fresh source of information unsullied by influence.

“It’s hard to balance that imbalance,” Mattila said. But at the very least, the affiliate can work to correct it. Although it might “sound like craziness” to strive for more power and influence, he added, he wants the affiliate to “get to a position to be able to do that—and to try to mobilize the movement that is growing. To try to be a channel for the wheel of change that is existing, already, in many places…to be the uniting force in the shift.”

That wheel is in motion, he said. People with lived experience and professionals who question the reigning paradigm are already uniting, already working to get the word out. He sees this in Sweden and sees it internationally, too, through Association of Alternatives to Psychotropics and the affiliate’s participation in the global Mad community. Being part of that network, seeing the work being done, offers a glimpse into other countries and a sense that the world is gradually shifting. “The movement that I see growing—I see it internationally,” he said.

That gives him hope.

“I’m convinced that change will come. It’s inevitable—because you can’t keep your eyes closed for, like, an eternity. So I think there are more and more people getting involved. There are more and more people starting to ask questions about the sustainability of the current paradigm.

“So it will come,” he added. “But it will not come without a fight.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Sweden appeared first on Mad In America.

The first is professional. The second is political. The third is corporate. And the fourth—“last in line behind the soup pot” —is effective patient care, putting what should be everyone’s foremost concern smack at the bottom of the list.

For mental-health service users, this means they’re fed the standard line: that their distress is due to a chemical imbalance, and that psychiatric drugs will fix it. Powered by money, propagated by the media, and practiced by the system, the enduring “neuromythology” of the biomedical approach is “being peddled like knock-off watches in a back alley somewhere,” Wedlake said.

“That’s back-alley crime,” she added. “It’s tawdry, it’s dirty, it’s deceiving and back-handed. And that’s what’s happening in mental health in Canada.”

Wedlake, a psychotherapist with her own lived experience in the system, is a faculty member at the School of Health Studies at The University of Western Ontario. She runs the website with co-editor Lucy Costa, an activist and advocate for mental health service users and survivors who’s also an author, curriculum developer, and co-editor of publications (including Madness, Violence, and Power: A Critical Collection).

Together, with Mad in Canada, they hope to challenge and change the system with established research and alternate viewpoints, all of it designed to hold those in power accountable and ignite new conversations based on cold, hard facts. Its ultimate aim: To bridge the “knowledge gap” between practice and science, pushing patient care further up the list of priorities.

The new site is “really about fostering the unique conversations that need to happen in Canada,” Costa said. Among those conversations are “discourses of equity, discourses of inclusion, of engagement, participation” involving voices too often unheard on topics too often ignored. Whether the subject is institutional care or community care, Mad studies or activism, the goal is to provide “a fair, accessible place to speak to those issues across the country.”

The site launched in June of last year, several months after Wedlake first reached out to Mad in America with her vision of an affiliate designed specifically for Canada—addressing the Canadian health care system, reflecting Canadian concerns. About a month and a half later, she got the green light—and started poring through a list of potential collaborators who might help her run it. Someone gave her Costa’s name, and they connected.

“An angel dropped Lucy out of the sky. . . . Right away it was just simpatico,” said Wedlake.

In their work, Costa focuses more on policy and politics; Wedlake focuses more on treatment and the clinical end. Because both have a work history inside the mental health sector, Costa said, they share “a particular understanding of the mechanisms of different organizations.” The result is both “a blessing and a curse. It leaves you well-situated to see, a bit more closeup, how things work.”

What visitors to MadinCanada.org see: Purpose. Topping the homepage is an enthusiastic welcome, a call for change, and a promise to serve as “a forum for progressive writing which reconsiders the public discourse on mental health distress in Canada.” Underneath is a large ribbon and a statement of solidarity with First Nations, reflecting the affiliate’s determination to include discussion about anti-Indigenous racism, reconciliation, and the rights of Indigenous peoples in Canada and in the psychiatric system. That, Costa said, is imperative.

Scrolling down further, visitors will find a diverse array of articles, including pieces on the latest research, perspectives on ethics, and a story on British Columbia’s widely criticized Mental Health Act. To the right are links to news stories across Canada and recent Mad in America content. Tabs above and sections below direct readers to blog posts, including personal essays and commentary; an online gallery featuring artwork, humor, and poetry; MIA podcasts; reports and “grey literature” distributed outside the established channels; and global new stories and links to other Mad affiliates.

Being part of the global Mad community is “awesome,” Wedlake said. While specific concerns may vary from country to country, the broader issues and challenges—questioning the paradigm, empowering the voiceless, pressing for human rights and representation—remain the same.

“There’s themes that connect us all together and have connected us for a long time,” Costa said. Thanks to social media and other avenues in cyberspace, “We have an ability to cross-pollinate and discuss. . . . Being able to have that space really is refreshing and cathartic.”

“It’s about getting the word out there. It’s about getting people talking,” Wedlake said, adding: “It also gives us some cred.” Costa expanded on this, noting the importance and the impact—now and in the future—of the rich content being presented online. The articles on research, the blog posts written from lived experience, the explorations of systemic failures, and the exhortations for change are all there, on one sturdy platform, for anyone to find.

“It becomes very difficult to dismiss,” Costa said. “For years, people who are on the receiving end of services have been historically dismissed, over, and over, and over again. But once you hear people say the same thing, it becomes much more challenging to keep dismissing it. And this poses a dilemma for psychiatry.”

Gauging Mad in Canada’s reception and impact so far isn’t easy, they said, in part because they’ve only just started—and in part because Canada has a culture of politeness that tends to put a damper on candid discourse.

Whatever, however, and whenever criticism comes their way, Costa expects Mad in Canada will rebut it with rigorous content based on indisputable science—“and have the debate there.”

That gulf between science and practice, for instance—Wedlake calls it the “gaping canyon in Canada,” and she considers it a prime subject to tackle. She glimpsed the chasm first as a student working in a youth residential-treatment center, later as a psychiatric patient, then as a Ph.D. student baffled by the lingering influence of long-disproven claims. “The disparity that actually exists between what’s real in the literature and science, and what’s actually practiced . . . When you actually see what this canyon of difference is, it’s just extraordinary,” she said.

In 2018, the Canadian Institutes of Health Research—a government-funded body—released a report, Hacking the Knowledge Gap, that explored the divide between research and practice. As the authors stated, “It takes approximately 17 years for research evidence to be fully adopted by practitioners and the public. This gap between research and practice means the public may not benefit from health research until nearly a generation after discoveries are made.”

Wedlake’s not surprised. As she sees it, “We’re working, like, 20 years behind in mental health in Canada.”

Crossing the gap is the affiliate’s foundational mission. As it grows and evolves, Costa said, she wants to avoid the opaque and directionless “liberal pontificating” that dominates other, more mainstream sites. She wants to be more concrete, more action-oriented, more direct in calling out the failures of the system and demanding—once again—accountability. “Mad in Canada has to have a writing-and-action kind of aspect to it. There has to be some action.”

Driven by commitment and enthusiasm, the all-volunteer Mad in Canada editorial team is short on time and resources—and, after two years of pandemic stressors, exhausted. “We’re running on love and fresh air. . . . Every morning I check the front porch,” Wedlake said, “and there’s no bag of money.”

At some point, with some funding, they’d like to hire a part-time staffer or two to help implement outreach and submission requests across the country. Right now, Costa said, potential contributors don’t even realize Mad in Canada exists, much less realize they can write for it. That’s a smaller gulf to cross in the quest to raise awareness.

“Knowledge is power, right? Knowledge is power,” Wedlake said, reflecting on the need to educate and bring change to Canada. They’re still getting going, but they’ll make it.

“This is a slow and steady climb,” she said. “And it will be worth it.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Canada appeared first on Mad In America.

Mad in México, which launched in September of last year, exists to make “los abandonados” heard. It aims to amplify those voices, empower them, embolden them—to wedge open the conversation surrounding mental health, knocking down the doors that seal off access in psychiatric, legal, penal, and academic institutions throughout the country and Latin America.

“We have to fight against that—and let these institutions know that they can’t get rid of us,” said Ilse Gutiérrez. “If they want to talk about madness… they will have to talk about us. Because we are part of that. We are not expendables. We are here.”

Gutiérrez was on a Zoom call with three Mad in México colleagues: Oscar Frarum, Víctor Lizama, and Luis Arroyo Lynn, who translated for the others. All four are participants in México’s Mad Pride movement. All four are also members—Gutiérrez and Lizama are founders—of the nine-person activist collective SinColectivo, which created Mad in México as one project in its broader campaign to fight injustice and advocate for rights across all systems and populations. The push for liberation of abused and oppressed peoples has a long history in Latin America, and it continues with the work of MIM and its overarching collective.

“Historically, the group of mental-health psychiatry survivors has been oppressed—from academia, from the institutions, even from other activists,” Lizama said. “So we believe that to reverse that, we need, first, to liberate ourselves from the inside—to open up to the outside. And this is the process of opening up to other discourses, other narratives, other experiences.” Or, as Arroyo Lynn put it: “We believe that no one should be subject to violence, that no one should be subject to oppression. . . . We deserve the right to be free.”

“And so we fight,” Frarum said.

Each has their own story to tell. Frarum has experience with suicidal desire, depression, and anxiety, gradually identifying as a person with psychosocial challenges and becoming an activist with SinColectivo and Mad in México. Gutiérrez, who spent 12 years on drugs with a diagnosis of schizoaffective disorder, demedicated herself and embarked on the quest to make madness “visible”—embracing it while rejecting all stigma. Lizama, on his own path, took himself off antipsychotics after years of being medicated, isolated, and institutionalized—and now works for the Mexican human rights organization Documenta, where he coordinates a team of justice facilitators for people with psychosocial and intellectual disabilities.

As for Arroyo Lynn, he arrived at Mad activism as an ally, first witnessing the inner workings of psychiatric hospitals in his training as a psychologist: the bad practices and abuse, the overmedication, the horrors of electroshock, the “complete abandonment of the people that lived in those places.” Eventually, he came to realize “the farce that is the mental health system, the farce that is the institutions, the farce that is the diagnoses and the medications, the abuses of power that exist within those walls.”

Indeed, the mental-health system in México is notoriously overwhelmed and has a history of abuse and neglect. In 2010, Disability Rights International released “Abandoned and Disappeared,” a 94-page report detailing the institutional outrages endured by adults and children at facilities across the country. In 2015, it released two follow-ups: One on “torture, trafficking and segregation” of children, especially those with disabilities (México City has since banned restraints and cages);  the other on the abuse and denial of sexual and reproductive rights among women with psychosocial disabilities.

The problem, say the Mad in México collaborators, is the lack of any true dialogue—or any recognition within institutions and academia that people affected by such abuse need to be heard. As the MIA affiliate explains on its “About Us” page: “Our priority is to make room for the experiences and knowledge of those who have directly experienced the effects of the ‘mental health culture’ and the hegemonic models of care.” Professionals aren’t excluded from dialogue, but they need to maintain that same, critical perspective on psychiatry and the current medical paradigm with the same regard for human rights.

The turning point in MIM’s origin story was the moment when, back in June of last year, the website formerly known as Mad in America Hispanohablante became Mad In (S)pain—and, seeing a gap in coverage for Latin America, Arroyo Lynn and his colleagues resolved to fill it. After a conversation with Mad in America, they decided to focus first on México, and from there form collaborations with other countries.

That was just six months ago. Assembled with no funding and running on the fuel of volunteers, the website is already packed with content, including translated articles from Mad in America; material reposted from other platforms; and original, first-person accounts of people with lived experience. In the Testimonials section, one writer describes his struggles with anxiety; another describes her nightmarish ordeal with benzodiazepines.

The idea, said Arroyo Lynn, is to “start to give voice to these people that have been voiceless.”  That’s the foundational mission for SinColectivo and, by extension, Mad in México: “That people that live with all these struggles, all the discrimination, have a chance to raise their voices. Because who else will know better than the people that have lived it?” He calls this “the knowledge of the people,” and disseminating it—from a widely inclusive, widely accessible platform outside academia—is the affiliate’s chief aim moving forward.

That main objective breaks down into a to-do list of related goals. The first: solidifying and expanding the platform. Arroyo Lynn wants the site to have a bigger reach; he wants it to be taken seriously as a source for critical views; he wants students studying mental health to utilize it, people to rely on it, as “a primary source of information.” The second: “To start building a community—not only in México but in South America, in Latin America,” dissolving borders and creating “decolonized thinking in mental health.”

His colleagues and collaborators expressed similar hopes. Frarum sees the affiliate emerging, within the Hispanohablante community, as “a kind of library, or archive” that can be accessed by anyone—not just privileged individuals within academia. Gutiérrez concurred, emphasizing the need to “fight against the elite” and the institutions that barricade information from outsiders.

Access needs to be wide-open in both directions, they say. The goal is not just to share knowledge with all, but to glean knowledge from all—especially the people who, in Lizama’s words, “experienced the operation of the mental health system firsthand. Because that’s the only way we change the system.” Ultimately, he said, their input can and should influence the mental health system, the educational system, the legal and penal systems. All of it.

Although the site is only just launched, it’s showing early signs of impact. One: Some early comments saying “We should have something like this in Peru, we should have something like this in Argentina,” said Arroyo Lynn. Another: the testimonials and emails being received from people who want to share their stories or want to collaborate.

Readers are seeing themselves reflected in the content on Mad in México, he said—and they’re responding. At a recent screening of the new documentary Medicating Normal, commenters afterward spoke of their own lives and the decision, finally, to go off their psychiatric drugs. Arroyo Lynn and his colleagues at MIM hope to reach more such people and nurture, over time, a supportive network that becomes a true community.

“We have a lot of work to do,” Lizama said. “But in this moment, I think we are having a great start—and we are starting to find the ways that we want to work. We are starting to find our own mission.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in México appeared first on Mad In America.

In fact, it’s both.

“We had a very clear goal of being a kind of gateway that provides access to international knowledge and information about psychiatry,” said founder and editor Monique Timmermans via email. “Our logo expresses both the ‘M’ of the Mad family and that gateway. With the colors, we try to radiate professionalism. We also subtly symbolize to shed a different light on existing paradigms.”

She and her husband came up with the idea—and her brother, who has an advertising studio, helped realize it. The logo captures the essence of Mad in the Netherlands, a freshly launched MIA affiliate that strives to connect Dutch readers with critical research and insights from around the world.

That’s a considerable undertaking.

For one thing, Timmermans explained: In the Netherlands, the psychiatric system is heavily influenced by the biomedical narrative and just as heavily reliant on the Diagnostic and Statistical Manual. Long-term prescriptions are common; so are waiting lists; so is victim-blaming. Holistic treatments are hardly covered by insurance.

For another: Research and other resources on psychiatric drugs are not easily available in Dutch. Timmermans isn’t sure why. If you feel fine within the established treatment, plenty of information is available. “But when the guidelines do not suit you and do not match your feelings, it becomes complicated to find alternatives or to find peer support that brings empowerment,” she said. Further, they might not know how to look—which search terms to use, which websites to access. A patient might be on antipsychotics and in agony with restlessness, “But if you don’t know the word ‘akathisia,’ what are you searching for?”

Enter Mad in the Netherlands, which gives readers an entryway into an alternate conversation about mental health and the science challenging the current paradigm for care.

“The prerequisite for being able to find other paths is the awareness that other paths exist,” Timmermans wrote. “That is why we open the gate.”

Timmermans answered questions via email and Zoom, discussing both the origins and aims of the new MIA affiliate and her own personal journey. She has 10 years of lived experience as a patient diagnosed with psychosis, PTSD, and anxiety—“but, in retrospect, I believe the main problem was disturbed grief” following the death of her premature daughter. As she described it, “A lot went wrong during the farewell, causing confusion and seriously disrupting the grieving process.” That disruption continued, and she ended up in psychiatric treatment.

After 12 years, feeling recovered, she resolved to taper off her antipsychotics and proceeded more slowly than the guidelines indicated. A few weeks after the last pill, she developed tardive dystonia, tardive dyskinesia, and tardive akathisia—without knowing what they were.

“I was in a constant horrible state of pain, restlessness, and overwhelming excitement,” she wrote, “and had no idea what was happening to me. It was incredibly frustrating that I could not find help in the Netherlands at all. The ‘professionals’ who knew just fine how to prescribe medication knew nothing about safe tapering and even less about tardive withdrawal symptoms.”

Then, after around nine months of searching, she found a video by the Danish psychologist and psychiatric survivor Olga Runciman. Googling some more, she found Mad in America—“and a whole new world literally opened up for me.” She realized an “enormous amount of knowledge and material available worldwide,” and she decided to make it available to other Dutch-speakers on a similar quest to understand.

As she put it: “I want to spare other people with similar complaints an endless search by putting them on the right track through Mad in the Netherlands. Once you have found that first site, you can use the links and search terms from that site to find whatever you are looking for.”

In April of 2020, Timmermans emailed Mad in America about starting an affiliate. Ten months later, on February 1, Mad in the Netherlands kicked off with an array of content designed to highlight research and open up access to other platforms around the globe. The site includes, for a start, a pharmaceuticals resource page; a section devoted to articles translated (in whole or in part) from Mad in America and other sources; a “quarterly theme” page currently focused on Adverse Childhood Experiences (ACE); and a page linking to other global and Dutch information sources.

“The goal of our website is to make global knowledge findable,” she wrote in her email. “We hope that patients, their loved ones, and practitioners will use our website to broaden their view on psychiatry by providing them sources of information that enables them to make informed choices.”

What Mad in the Netherlands doesn’t publish: Her own blog posts. In general, she said, the Dutch prefer “evidence-based” and “down-to-earth” arguments over discussions based on personal feelings—so science is what she emphasizes on her site.

Besides, she said, there are plenty of other, excellent sites out there that provide a platform for people with lived experience: “The Hearing Voices community, the Open Dialogue community.” Once again, “I’m just the gate. Okay, so you want to withdraw? Go to Inner Compass. You want to talk about dystonia? Go to the Dystonia Foundation.” There’s no need to reinvent the wheel.

As for funding, Timmermans is determined to remain as independent as possible. She doesn’t want Mad in the Netherlands to compromise in its coverage; she also doesn’t want anyone to suspect it of being compromised. Besides the basic resources offered by Mad in America, she wrote, “We run on a budget of € 0. People who write, illustrate or translate for us act from idealism.”

Besides Timmerman’s husband (John Timmermans) and brother (Joris de Mol), Mad in the Netherlands benefits from contributions of illustrator Annemarie van Essen and several translators, including Joost Roompa—who also helps with article selection. In addition, the affiliate asks specialists on particular topics to review relevant pages—so, for instance, a trauma-informed therapist took a close look at the ACE page.

What’s missing, right now, “is someone who can spend more time to raise awareness on social media. Because our team is still small, we cannot be as interactive as we would like.” That’s one of the affiliate’s goals moving forward. Another is to “strengthen the call for change” in the Netherlands, amplifying the work of those who advocate for new mental health care “with less fixed rules and more room for the human side,” she said.

Just a few weeks after its launch, MadintheNetherlands.org has had 600 unique visitors and 2,000 pageviews—an early indicator of impact. Another indicator is positive reader responses on social media, mostly from patients. In the future, Timmermans hopes to reach professionals as well. And they, she hopes, can push for reform.

Diplomacy is the key, she added—citing polder, a Dutch model of cooperation named after the system of dikes and mills that control flooding in low-lying areas. “If you want to change something, you must stay on speaking terms with people you want to change.”

She reflected, again, the grief that began her journey—and then the second grief that hit her later, in her search for information, when she realized that most of what she’d been told was wrong. Running the affiliate now “is giving value to the grief. So it wasn’t for nothing, all those years of fighting.”

There’s so much division everywhere, she said—so much isolation and failure to connect. “We all have things that happened in our lives, and we all think we are the only one that has such a story.”

In connecting with others, we know we’re not alone. And as she learned playing volleyball, team spirit is important. It provides connections, meaning, refuge, and strength. The MIA community offers the same, she said.

“That’s what I think is the power of Mad in the World. . . What if we all band together, and we are fighting the same fight? Then we are much stronger.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in the Netherlands appeared first on Mad In America.

Ignited by the psychiatrist Franco Basaglia—who had seen patients strapped down, silenced, abused, and incarcerated—it began in the city of Trieste. From there, Italy instituted nationwide reform, culminating in the Italian Mental Health Act of 1978, or the “Basaglia Law.” Psychiatric hospitals were gradually shuttered. Treatment was moved to community-based care.

But as the organizers of Mad in Italy repeatedly, passionately express, Italian mental-health care still runs on the biomedical model. Disease is still the paradigm; psychotropic drugs are still the standard approach. And revolution, they say, is still necessary—in Italy, and around the world.

The only question: How to get there.

“Strategy is really important . . .We want to be goal-directed. We don’t want to be beating around the bush,” said Marcello Maviglia, cofounder and co-administrator of the nearly two-year-old Mad in America affiliate.

“I don’t believe in being a Don Quixote. I don’t want to fight against the windmill. I am aware that we are frail. We have limitations,” he said. But given the wide reach of MIA’s global community, “I’m also aware that we have a huge audience.”

Maviglia, a psychiatrist and behavioral health specialist based at the University of New Mexico, runs the site with Laura Guerra, a pharmacologist, biologist, and mental-health advocate based in Bolzano, northern Italy. Its main focus is research, publishing articles on failures of the disease model and the effectiveness of alternate, humanistic approaches. The goal is policy change; the means is data.

“It’s evidence-based. It’s science-based,” said Guerra, who translated Peter Breggin’s Psychiatric Drug Withdrawal and, more recently, Joanna Moncrieff’s The Bitterest Pills: The Troubling Story of Antipsychotic Drugs.

The publication of the Breggin translation was a significant moment, Maviglia said. “Before that, nobody was questioning, really, the use of pharmacology . . . Laura brought some science into the debate.”

Guerra has long tried to persuade people that drugs don’t work the way the biological model says they do. She has long worked to disseminate information on withdrawal. Back in 2014, she was a member of La Faretra—an association in Bolzano that advocates for youth mental health rights and organizes conferences on the topic—when she met Mad in America founder Robert Whitaker at an event.

A few years later, she helped create a Facebook page that challenged the pharmacological approach and offered info on psychiatric drug withdrawal: Mat in Italy, with a “T.” Among the stories posted were translations from Mad in America; the page shared content with several other groups devoted to recovery and critical psychiatry. Its reach began to spread.

That was how she met Maviglia. He was a longtime critic of the biomedical model who had participated in the Basaglia campaign before heading to the States for graduate training in psychiatry.

From the start of his career, he was “shocked” by the power and influence of the biomedical paradigm and was deeply versed in psychotherapeutic alternatives. He became even more invested in them after he married an Iroquois woman and started advising on Native American mental health, which is traditionally holistic and community-based. Recently, he helped start a clinic aiding people in withdrawal from psychotropic medications.

But all of that runs counter to the conventional narrative, which Mat in Italy did its best to correct. In the beginning, Guerra said, “consumers were completely surprised about this information—because they only had psychiatrists’ information, which says that ‘Your brain has a chemical imbalance, and you need drugs to balance it.’”

Meanwhile, blowback began from the psychiatric establishment. Certain professionals who follow the biomedical model turned defensive, personally attacking Guerra and Maviglia. “It was evil. It was evil,” he said. She agreed: “It was crazy. . . . Every day, it was a war.”

Eventually, they realized they needed to post their articles and make their points from a more established platform, “something like Mad in America.” In the throes of such disputes, they decided to create an official MIA affiliate in Italy.

It launched in July of 2019. The affiliate retains a kinship with Mat in Italy, with articles and readership criss-crossing both platforms. Mat in Italy has 2,800 members; Mad in Italy’s official Facebook page has 2,283 likes. Together, they said, Mat and Mad in Italy get the word out to providers and users both.

“Even in terms of concrete help,” Maviglia said, “at least we are able to say to people that there is an alternative to drug use: You don’t have to stay on your meds for the rest of your life.” 

On Mad-In-Italy.com, the home-page banner features an image from Michelangelo’s fresco from the Sistine Chapel—God’s finger tipping Adam’s with life. Beneath it are pull-down tabs devoted to disorders; drugs; substance dependencies; “Voices from Italy,” including testimonials of lived experience; resources, articles, and videos; and links to MIA global.

Its “Who We Are” page lists Maviglia and Guerra as administrators, along with Antonino Napoli, an activist and meditation instructor with lived experience, and Dan Monticelli, a hypnotherapist, theologian, and author of several books (including New Paths to Recovery: Behavioral, Physical and Spiritual Potentials for Cannabis, coauthored with Maviglia and Geneva Thompson).

But day to day, most of the work is done by Maviglia and Guerra. “We are essentially two,” she said. And funding, he said, is “zero.”

Aside from publishing content, Maviglia and Guerra also provide information to readers who reach out with questions about tapering, withdrawal, or other issues involving psychiatric medication.

They connect each day at 6 a.m., Maviglia’s time, to “address those issues that consumers usually raise,” he said.  “We discuss clinical cases on a daily basis with the intent of providing feedback. We are not providing medical care. We frame our feedback as suggestions, which people find to be very useful.”

“Many people thank us for our information,” Guerra added. “I think our information has reached many consumers, and also many psychiatrists.” This is, she said, a ripple effect of the affiliate’s influence.

Which points to more evidence of its impact: The language used by Mad in Italy, and by other reform groups in the country, is seeping into the wider conversation, gradually changing how consumers, providers, and, now and then, even someone in government discuss mental health. Instead of “mental illness,” they’ll use “emotional distress.” Instead of “treatment,” they’ll say “recovery.” Concepts like peer support and the need for psychiatric drug withdrawal centers are also trickling down into the wider conversation.

All of this, Maviglia said, is no small thing. Although he often feels “philosophically and academically isolated” from others in the field of psychiatry, he is confident that Mad in Italy is making a difference. “We are influencing the debate in the media, and probably also in the mental health network,” he said.

In the future, he hopes to increase their “person power” with the addition of staff. He also hopes to collect data “from our members and around Italy” with mental-health surveys that would then be published in peer-reviewed journals and posted online in an effort to reach those in official positions. Such research is a way to alter policy, he said.

“That is our mission, and I think it is doable. . . . I do not believe in setting limits,” he added. If they aimed any lower, they would be “undermining our goals.”

This is one reason being part of the Mad in the World community matters to them. They see that their aims and activism are shared by global colleagues. “We’re very conscious of the Brazilian experience, the Mexican experience, the Latin American experience in general—as well as the European experience,” he said.

They believe in “the synergistic aspect of a network,” he said. They want “to share information, articles, and experiences with the other Mad entities around the world.” They see such international fellowship as key to fostering an agenda with Italian institutions and agencies, constantly pushing for change.

“This international collaboration could translate into something extremely revolutionary,” he said.

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Italy appeared first on Mad In America.

It has comprehensive national health coverage. It has a Ministry of Health directive requiring each of the country’s four regional authorities to offer at least one small unit of non-medicated treatment in a public hospital. It has a full private hospital devoted to same. It has other public programs, in place in many of the country’s 428 municipalities, offering humanistic, community-based care. And it has a tradition of listening and inclusion across all social strata and demographic groups.

People from around the world look to Norway, she realizes. They want to emulate it. But still, she said, it has continuing problems with forced treatment and human rights violations. And those non-medicated units—those places of refuge where people can either stay off or taper off psychiatric drugs—are “a tiny part of the whole system. And the rest of the system is very heavily based on the medical model.” Those very units offer “sort of an oasis from the rest of the system,” she said. “So it’s not all rosy.”

A clinical psychologist and author of Beyond Best Practice: How Mental Health Services Can Be Better, Valla brought together the group of activists and professionals who created Mad in Norway a little over two years ago. Valla did so after originating, and leading, a non-diagnostic, community-based mental health service in the Stange municipality.

From the start of her career in psychology, “It very early became clear that there was something wrong with the way mental health, the way the system, was set up—and how we were thinking with the diagnoses.” But saying so was out of the question. “You weren’t taken seriously. You were a charlatan, or something.”

When Valla first read Robert Whitaker’s Anatomy of An Epidemic, she thought: “Finally, my thoughts are being validated.” But Norway’s mental-health establishment is conservative, she said; practitioners within the system are hesitant to criticize it or refute the official guidelines, which legally require them to diagnose. So she was reluctant to speak out until she read two more books, both by UK authors: Cracked by James Davies and Prescription for Psychiatry by Peter Kinderman.

“It was after that that I started openly to speak in Norway about my skepticism and critique of the diagnostic system,” Valla said. Connecting with others who shared her views, she was invited to join the International Institute for Psychiatric Drug Withdrawal. At an IIPDW meeting in Gøteborg in September of 2019, she spoke with Robert Whitaker about creating a Mad in Norway page; the very next day, she fired off an email to everyone she knew with sympathetic views. “And I got so many replies, I was high.”

The website launched in December 2019, topped with a logo inspired by Edvard Munch’s The Sun and fueled by a mixed group of editors and contributors from all walks of life. “We have people with lived experience, we have researchers, and we have professionals”—psychiatrists, psychologists, nurses. “We have all of this, from all parts of the system, that come together.”

Among those listed on the editorial team are Grete Johnsen, a nurse and activist with lived experience; Tore Ødegård, who works at a non-medicated hospital unit in Tromsø; and author, composer, and educator Odd Volden. Voices of youth and children are represented by another editor, Anika, who posts their content and is a young person herself. (Mad in Norway also cooperates with The Change Factory, which surveys young people on their experiences.)

Everyone’s a volunteer. Funding is nil, or nearly. Mad in Norway’s recent seminar did receive some aid from We Shall Overcome, the organization founded in 1968 by psych users and survivors. But beyond that, they only receive the usual support (with Internet hosting and editorial resources) that Mad in America makes available to its affiliates.

At some point, Mad in Norway will be applying for “a little bit of state funding” in the hopes of holding more such seminars, although those who lecture at such events “all do it for free. No one has any money. We’re all idealists about this.”

That said, hiring someone part-time would help run the website, which offers an array of content both original and translated: news; articles on the latest studies, composed by a research committee; and an “Expressions” section that features a wide range of personal stories and commentary. In addition, a year ago Valla created a podcast—“which is a very good way to get knowledge out to people. And many people listen to that, and many people find hope.”

Some have urged her to record the podcasts in English—with the aim of reaching a more international audience. But although she appreciates being part of a wider, global community, right now she wants to keep the focus on Norway. Norwegians still need to be persuaded; work still needs to be done. “You need to keep order in your own house,” she said, “before you go out into the world.”

The country has potential, she said, and those little units offering non-medicated care “are just a small part of it. I really believe that Norway can even more be in the forefront—because we have this welfare system, we have these politicians, we have these strong user movements, and we have professionals.”

Reaching out directly to policymakers should help—as it did with Bent Høie, the Norwegian health minister who first instituted the non-medicated directive in late 2015 and pressed for compliance in the months that followed. “The key lies with the politicians, I’m sure—because you have to change the system from the outside. It won’t be changed from the inside.”

That’s her message to others around the world: Get outside the sealed environment of psychiatric care. Train your sights on those in power who can make policy and effect true reform. “If people within the system—if they decide, it won’t happen,” she said. “So you have to have (people) who are responsible from the outside the system to decide and say, ‘We want this.’”

Valla sees the Mad in Norway’s impact—present and future—in terms of that quest to alter the paradigm. Judging from emails they’ve received from professionals and those with lived experience, they’re reaching people.

“I think the impact now is that people are getting some faith back. . . . People are getting some hope, and they are finding each other, and we are building this community of people who want a change. I think we have done that, a little bit. I don’t think necessarily we have changed anything in the system,” she continued. “Not in a profound way, anyway.”

Moving forward, that’s the mission—profound change. In this vision, “When a person is in distress or needs help, then they can very easily—where they live—reach out and get help in this way. Without diagnoses, medication, any of that. . . . So in the long-term, we want to change the whole system.” To that end, “Our ambition this year is to become even more visible, and participate in different things, so that Mad in Norway is a voice—an even stronger voice. We want to be heard. And we want to have a say in how to develop mental health in the future. . . . Because I think, in Norway, people want to listen.”

Many Norwegians, politicians included, can see that the system doesn’t work. They can see more and more money being spent, more and more diagnoses being made, more and more folks on disability. Mad in Norway can map out an alternate way forward, she said—offering something more than criticism of the existing paradigm. They can be a guide for the future.

“If you start doing something good, it will spread all over,” she said. “So that’s what we’re hoping.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Norway appeared first on Mad In America.

As is true of all Mad in America affiliates, Mad in Brasil want to see a transformation of the current drug-based paradigm of care.

“[We want] to promote, to create, a radical rupture—a break—a radical rupture in our relation to the psychiatric model,” said Fernando de Freitas, psychologist and co-creator of the site.

That means going beyond Brazil’s history of dehospitalization into a new model that challenges and redefines the very nature of psychiatric care. Even in a community-centered approach, the same prevailing medicalized elements need to be reconsidered: The reliance on diagnoses. The emphasis on drugs. The overarching impact of the paradigm itself.

“Questioning its concepts and practices”—that, Freitas said, is everything. “To reflect, to re-think, to question. We want to change the conversation.”

For the last five years, that quest has fueled the work at Mad in Brasil. Founded by Freitas and preeminent Brazilian psychiatrist Paulo Amarante—the driving force behind the country’s groundbreaking 1980s psychiatric-reform—the MIA affiliate is based at the Oswaldo Cruz Foundation, the globally influential public-health research center based in Rio de Janeiro and known widely as Fiocruz.

The past provides reason for Mad in Brasil’s leaders to believe that a paradigm shift is possible. In the early 1980s, Freitas explained, “We initiated a psychiatric reform process in Brazil inspired by the Italian psychiatric reform” movement of the 1970s. That campaign, led by psychiatrist Franco Basaglia, culminated in the Italian Mental Health Act of 1978—known as the “Basaglia Law”—and shuttered psychiatric hospitals in favor of community-based mental healthcare.

The subsequent Brazilian reform used a similar approach, pairing deinstitutionalization with the establishment of Psychosocial Care Centers, also known as CAPS. Some 40 years later, the country has 2,661. “The goal was to replace the hospitalization model [with] a community model of care,” Freitas said. Beyond that, in 2001 a federal law was created “providing for the protection and the rights of people with mental disorders.”

But the paradigm needs to be challenged further, he said. Several years ago, after reading Anatomy of an Epidemic and other work by Mad in America’s Robert Whitaker, Freitas and Amarante reached out and invited him to an international seminar at Fiocruz. Sometime later, Whitaker suggested Freitas and Amarante create an affiliate of MIA. Mad in Brasil was born.

That was summer of 2016. The natural base of Mad in Brasil’s operations was Fiocruz, where Amarante, now retired, had created the Laboratory of Studies and Research in Mental Health (LAPS), where both he and Freitas worked as professors and researchers.

Perhaps someday, Freitas said, Mad in Brasil might break away from Fiocruz into a separate organization with separate funding. But at the moment, it has no other source—aside from his own small contributions boosting Mad in Brasil’s Facebook posts. (There’s also a Mad in Brasil Instagram page.)

Most of the Mad in Brasil’s written content consists of work from other Mad in the World outlets. Freitas spends hours translating articles posted on Mad in America, Mad in the UK, and sometimes Mad in Italy. Traditionally, he noted, Brazil does not produce much original research. Also traditionally, Brazilians are reluctant to write up their own stories of lived experience. A student, Camila Mota, also posts weekly reviews of publications from Brazilian research journals.

Further complicating matters is the pandemic, which moved MIB operations from Fiocruz—and its research-publication portal—to Freitas’ home. Once COVID allows a return to the center, he hopes to resume video segments for TV Mad in Brasil, including interviews and weekly 20-minute roundups. All of that will be easier with the higher-quality sound and lighting available at Fiocruz.

In the future, he also hopes to coordinate and collaborate more with Mad in Italy, including plans for a joint international seminar on the legacy of Basaglia. That, he added, is an example of the “collective” work that Mad in Brasil envisions with the Mad in the World network.

Beyond all such goals for Mad in Brasil—underscoring everything that Freitas hopes to accomplish—is the need to keep altering the conversation around mental health, to keep challenging the paradigm. Although Brazil remains among the most progressive countries in that regard, much, he said, still needs to be done. The drug model still prevails; the DSM still reigns; even within the community-based CAPS centers, people still need a diagnosis to receive any funding or care. And many still believe such diagnoses are lifelong, chronic conditions.

The system needs to shift away from such “psychiatrization” of mental health care, he said. “People receive a lot, a lot, of psychiatric drugs. . . . It’s very common, and people are dependent on these treatments,” said Freitas, co-author of Medication in Psychiatry. “And people are dependent on these treatments, these psychopharmacological treatments.” This despite the effectiveness and availability of psychotherapy and community-based psychosocial approaches that include, for instance, soccer teams that integrate service users with people from the wider community.

In Freitas’ view, many Brazilians simply need to be informed of an alternate, drug-free path—because they’ve never been told there’s another way. This is what he hopes to accomplish through Mad in Brasil and the work of the wider Mad in the World affiliates. This is its impact so far and its mission moving forward: gradually bringing new concepts, new ways of thinking, to new readers.

Although he understands many are resistant to change, Freitas believes that there are also many in the field who, exposed to new information and new ways of thinking, are open to change: “Students of psychology, students of medicine, social work students, and users,” he said.

“Above all,” he said, those are exactly the types of readers Mad in Brasil wants to reach: those caught in the current, DSM-centric, heavily medicalized model. Right now, “They don’t have access to this information. They don’t have access. So it is very important—very important” what Mad in Brasil and other MIA affiliates are working to achieve.

All of his efforts, all of his strategies, have one clear goal: “To reach more people,” he said. “That’s exactly it.”

*****

MIA Editors: Over the next 10 weeks, we will be publishing a profile of each of the Mad in America affiliates. They have banded together as a “Mad in the World” network.

The post Mad in Brasil appeared first on Mad In America.

We mourn the loss of Darby, our friend, colleague, boss, comrade and inspiration, who passed way too soon from a devastating cancer and its treatment. As a team, the four of us had a lot of fun, conviviality and a mission transforming the mental health system in New York. We tried to improve the system from within, but the system was stronger than us.

Darby was always consistent and passionate in her leadership, as well as clear about the formidable obstacles ahead. She never trusted the system and tried to remain a thorn in its side, until the people running it saw her true colors, forced her out, and disbanded our team. Without Darby, peer specialists would not have become established in NY as the first state in the nation. At the same time, she was highly skeptical about the potential of peer specialists actually being able to promote true transformation in a system that is still wedded to institutionalization, coercion and biological reductionism.

Only a few months ago the four of us had our first reunion after a number of years over zoom and Darby was already ailing, but pushing on. She remained engaged in the fight until virtually days before her passing and never abandoned the cause. It was heartbreaking to see how she struggled to keep up with her many engagements in spite of a perpetually worsening “chemo fog.”

Celia

It is with sadness as I reflect on the passing of Darby Penney. As I write about Darby, there is so much to impart because I either witnessed her greatness or was part of it in New York State. She was the first Director of Recipient Affairs for the Office of Mental Health. Darby was my supervisor in the 1990’s and early 2000s. As an effective policymaker, Darby created policies to support innovative peer-run programs in NYS. This was a time when non-peer clinicians believed that they were the only ones who can provide mental health services for people with psychiatric histories. Darby changed this perspective.

She strongly believed that peers, ex-patients and survivors can support and empower their fellow peers. Peer-run services were on the rise in New York State. Darby would tell you that if organizations did not have at least 51% of people with psychiatric histories on their board, then it wasn’t peer-run, but at best peer-driven. Darby supported truly peer-run services and training for us and by us. She secured funding in the development of peer-run services and projects. This wasn’t easy, but she never compromised. Darby wrote an article on this subject titled “How to Recognize A Peer-Run Program. ”

Working with Darby, we were able to use our mental health expertise, peer support and first-hand experience of surviving the mental health system to create meaningful change. The four of us developed monthly Self-help & Empowerment Seminars and created a space to foster hope and empowerment, where consumers, peers and survivors could share their voices. We facilitated discussions on topics such as self-help, peer support, advocacy and advance directives. In my role as Director of Peer Specialist Services, I provided support and technical assistance to peers in their new peer specialist civil service title positions. Darby insisted that state psychiatric hospital administrators interested in hiring peer specialists develop a plan on how they would support them and define their role in state outpatient clinics. She also demanded that peer specialists should always work with other peers in institutional settings in order to lessen co-optation and provide mutual support for each other. Darby provided a statewide training for peer specialists in collaboration with Shery Mead, who taught us concepts of mutual peer support, later known as Intentional Peer Support (IPS).

Ultimately, Darby regretted the way peer specialist positions were implemented in NY state facilities. She and Peter recently wrote a piece for MIA on this subject. I respected her feelings about it. However, I felt honored to be one of the first peer specialists because it gave me an opportunity to work and support my fellow peers. I hear Darby’s words on peer support reflected in conversations that I have with peers. She advocated for the integrity of peer support which had a profound effect on people with psychiatric histories and on peer specialists.

Darby’s legacy will live on. She was my friend, colleague, and helped me find my voice. The last conversation we had was organizing the INTAR Peer Support Webinar on November 22, which is going to be in her honor (www.intar.org). Rest in perfect peace. I will miss you, Darby.

Peter

Darby and I worked together on many things, not the least on the trove of suitcases from former patients that was discovered in an attic of Willard State Hospital. Oddly enough, when Darby called me about this treasure, I was already looking for artifacts in abandoned state hospitals with my cinematographer friend Lisa Rinzler. Darby invited us to work on a project reconstructing the lives of these long forgotten souls who were once owners of the suitcases and their contents. This work culminated in a major exhibition at the New York State Museum that traveled through the country, and a book, The Lives They Left Behind, which sold many thousand copies.

With Darby’s insight, careful editing and unswerving dedication to these long departed “peers” we worked hard to do justice to people whose lives were curtailed by misfortune and institutionalization. One of them, Lawrence Mocha, worked as the gravedigger of Willard for nearly 40 years and took careful measure of each dead body of his fellow patients. With Darby’s help we were able to put names on the numbered anonymous graves the institution provided for them. Darby kept this project alive for over 20 years, giving many public presentations, and developed a website open to all.

Without Darby, my career as a renegade psychiatrist would clearly have taken a different course. She was among the first, along with Celia and Ron, who opened my eyes to the importance of engaging on a collaborative and personal level with people who identified themselves as survivors of psychiatry and extreme distress. Our collaboration became one of many in this realm and my gratitude to Darby will never cease.

Ron

It is with a sad heart that I reflect and feel the loss of Darby. Twenty-five years ago, my life changed when I resigned from my position as Executive Director of a seven-county comprehensive mental health center and acknowledged publicly that I was a psychiatric survivor. No longer hiding my past, I met Darby and took a job in New York. Darby became my boss, and no better boss could I have had. We shared a passion to use what we knew to empower our fellow travelers and create meaningful change. Perhaps we were naïve in believing that we had genuine power and did not realize that we were subject to and buffeted by the ever-changing political winds. Darby provided the support, protection and guidance for me to grow into my new identity. And during that time our friendship developed. Both of us were avid readers and shared books that we enjoyed. Whenever I wrote an article, I would seek her opinion. I knew that her critique would be unvarnished and genuine. Darby was also an outstanding editor, and I don’t remember any instance of her not being available when she was asked to edit.

A highlight of my work at NYSOMH was when Darby connected me with Celia Brown and Peter Stastny.

The project that I found most rewarding was the work we did to bring self-help and empowerment to the outpatient departments of the 18 psychiatric facilities throughout New York State. In addition to teaching the possibilities of recovery and the benefits of self-help groups to patients and staff, we were authorized to evaluate services at psychiatric facilities and send our report to the NYSOMH commissioner. Throughout that time we learned much from each other and developed a friendship and respect for each other’s view that has endured. All of our numerous efforts were made possible through the administrative protection Darby skillfully exercised. We were able to work on and develop many programs until our influence became too much to be tolerated by the changing state politics. I suppose my most memorable and enlightening interaction with the Commissioner occurred when I was imploring him to do something about the abuses in the system. His response, “My job is to make sure that the governor is not embarrassed.” I thought to myself, that would never be the job for the four of us.

I could share many stories about Darby, but I will share only one. Darby and I were at Rockland State Hospital to do an evaluation of their outpatient services. We were sitting in the conference room with the administrators and the staff psychiatrists. One of the psychiatrists who was sitting next to me was whispering to me his criticism of the opinions of what was being expressed. I realized that since I was introduced at the beginning of the meeting as Dr. Bassman, he assumed that I was a psychiatrist. About halfway through the meeting, Darby excused herself to go to the rest room. To her surprise, the secretary told her that she could not use that rest room because it was only for staff, not patients. Darby used that encounter to help abolish staff-only restrooms throughout NY State. If my memory serves me, she won that battle.

Too many memories of fights won and lost to recount, but most notable to me was her friendship. For many, Darby was intimidating; her forthrightness, her intolerance for being fake or insincere or fawning, hid her soft heart, kindness, and vulnerability. For those of us who got to be close with Darby, who saw the many sides of a complex, caring good person, we will value the time spent with her. And for Peter, Celia, and I, we shared the best job we ever had — made possible by Darby Penney.

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MIA Editors: We encourage MIA Readers to add their remembrances of Darby Penney through the Comments to this post.

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