The Deputy Director for Safety at the FDA’s Division of Psychiatry Products answers my questions about how the risks of psychiatric drugs are evaluated by health regulators – and explains what you need to know to better protect yourself. Read the whole article or listen to an audio version of the interview at the Inner Compass Initiative website. (Note that while psychiatric drugs are the focus, much of our discussion generally applies to any other drugs as well.)
The U.S. Centers for Disease Control and Prevention recently released information showing that suicide rates have been increasing in virtually all U.S. states since 1999. I’ve removed my few random thoughts on how this correlates to rises in antidepressant use because Robert Whitaker has done a very helpful and thorough analysis of the topic that I recommend.
I am proud to have helped develop these two websites, contributing researching, writing and editing for them. One of the most significant elements is the development of the most comprehensive, self-directed, layperson’s guide to safer psychiatric drug withdrawal ever produced. I include below further details from the organization’s executive director.
I am writing with news that I’ve been eagerly anticipating sharing with you for quite some time. On behalf of my fellow co-founders and a growing number of volunteers, advisors, supporters, and contributors, I am incredibly excited to announce the launch of Inner Compass Initiative (ICI), a new 501(c)(3) non-profit organization, and ICI’s first major effort, The Withdrawal Project (TWP).
Our mission is to provide information, resources, tools, and connecting platforms ?to facilitate more informed choices regarding all things “mental health” and to support individuals and groups who wish to leave, bypass, or build community beyond the mental health system. (You can learn more about this mission here.)
Among the many resources you’ll find on the ICI or TWP websites are:
- Informational resources on psychiatric drugs, physical dependence and withdrawal: Many people are never given access to honest, frank information about psychiatric drugs when they make the decision to take or come off these medications. TWP’s Learn section provides an accessible introduction to how psychiatric drugs affect the central nervous system, what psychiatric drug dependence and withdrawal are and why they occur, and what “slow” tapering truly means. In addition, ICI’s Learn/Unlearn section provides accessible educational information about the safety and effectiveness of psychiatric drugs in ways that are much more detailed and forthright than typically appear at other major online sources.
- TWP’s Companion Guide to Psychiatric Drug Withdrawal: Despite the astronomical numbers of people taking psychiatric medications, there’s a severe dearth of studies or research into how to safely taper off them. But countless numbers of individuals who’ve come off medications themselves have taken what they’ve learned along the way and developed sophisticated taper protocols that they are finding lead to smoother and more successful outcomes. We’ve gathered this rich anecdotal wisdom and created a comprehensive layperson’s “Companion Guide” to safer psychiatric drug withdrawal that is freely available to all who seek it.
- TWP Connect: When people embark on the psychiatric drug withdrawal journey, they often feel terribly isolated, alienated, invalidated, and afraid – and so we’ve created TWP Connect to help them feel less so. It’s a free online platform that allows registered members who are thinking about, are in the process of, or have past experiences with reducing or coming off psychiatric drugs to find and connect with one another based on their location, interests, and needs.
- ICI Connect: We know that more and more people are losing confidence and trust in the mental health system and seeking out alternatives to it– but they often struggle to find one another in their local communities to discuss, organize, and build different ways forward. We’ve created ICI Connect to meet this need. It’s a free online platform that helps people thinking critically about all things “mental health” find and connect with one another based on their location and specific interests.
I’m so excited to be sharing news of our launch with you. Visit Inner Compass Initiative at www.theinnercompass.org and The Withdrawal Project at withdrawal.theinnercompass.org. You can also subscribe to our newsletter to stay up-to-speed on the latest news from us, and find us on Facebook and Twitter. Lastly, if one or both of our Connect platforms speak to you in some way, please sign up today! They will only become the robust networking and organizing platforms we built them to be if many of us join and give life to them.
Love and liberation,
Inner Compass Initiative (ICI) is a new 501(c)(3) non-profit organization that provides information and resources to help people make more informed choices regarding all things “mental health” and to support people who wish to leave, bypass, or build community beyond the mental health system. Its first major effort, The Withdrawal Project (TWP), is a comprehensive online hub for safer psychiatric drug withdrawal. The resources on the ICI and TWP websites include a detailed layperson’s “Companion Guide” to safer tapering from psychiatric medications; mini-booklets that provide detailed, critical information about psychiatric drugs, psychiatric diagnoses, and the mental health industry; and two networking platforms to help people who are thinking critically about the mental health system or seeking support for psychiatric drug withdrawal to find each other in their local communities.
Visit ICI at www.theinnercompass.org
Visit TWP at withdrawal.theinnercompass.org
Some people say that our province’s strong mental health laws save lives. A constitutional court challenge says they lead to discrimination, abuse, fear and the flight of psychiatric refugees.
THE PSYCHIATRIC NURSE held out a paper cup with pills. Sarah clasped a handwritten note. Having learned not to protest loudly, the 24-year-old gave the nurse her note that read, “I have a right to my mind and my body.” Then, she reluctantly put the pills in her mouth.
Sarah knew that she had to execute her escape out of British Columbia quickly, before the drugs seized control of her mind again.
Sarah (she requested her name be withheld) is sharing her story to show support for a constitutional court challenge recently launched by Community Legal Assistance Society (CLAS). The Vancouver non-profit is arguing that a key part of British Columbia’s Mental Health Act, called “deemed consent,” violates the Canadian Charter of Rights and Freedoms.
“At CLAS, we’re routinely told that people are either considering leaving BC to avoid our deemed consent laws, or that they’ve done so in the past,” says Laura Johnston, one of the lawyers representing three plaintiffs in the case.
CLAS has many concerns about BC’s Mental Health Act, explains Johnston. However, this case is focused on how the “deemed consent” provision violates rights to security of the person and equality before the law. “This case isn’t arguing that forced treatment can never be constitutional,” says Johnston, “But it does say that forced treatment which is imposed unilaterally by a doctor with no checks or balances and no recourse to anybody else is unconstitutional.”
ReachOut Psychosis is an “educational” show touring BC schools right now that traffics in a shocking abundance of misleading misinformation and blatant lies about the alleged dangers of psychotic or schizophrenic experiences and the wonders of pharmaceutical drugs.
I recently saw ReachOut Psychosis, and haven’t been able to rest until I’ve publicly commented on it. ReachOut Psychosis is an “educational” show touring BC schools right now that traffics in a shocking abundance of misleading misinformation and blatant lies about the alleged dangers of psychotic or schizophrenic experiences and the wonders of pharmaceutical drugs. It’s truly a wonder — and horror — that any teacher or school even brings this show in at all.
ReachOut Psychosis is described by its creators as a “high-energy, interactive and entertaining presentation, which provides life-saving brain science while countering stereotypes and misinformation around mental illness.” Produced by the BC Schizophrenia Society and funded by the BC government and various other mental health nonprofits, foundations and companies, it’s basically a lecture broken up by some live music, with an accompanying website, videos and teacher’s manual. The program has been “vetted” and “endorsed” by “early psychosis clinicians,” and is reportedly being provided free of charge to some 20,000 secondary school students in British Columbia every year.
I guess it’s not entirely surprising that prominent mental health professionals would endorse public deception at this level and scale — for example, I’ve previously written about how even a child and youth mental health training program aimed at BC family physicians was riddled with similar misinformation and pharmaceutical industry propaganda. Even if you, your kids or your students haven’t been and never will be subjected to this particular show, ReachOut Psychosis is emblematic of the broader mental health “education” movement sweeping across North American schools, so it’s still instructive for analysis and discussion and important for everyone to know about. (If you’re a teacher, feel free to print out or use this post as a basis for discussion with your class.)
Here is a rundown of some of the most important misrepresentations and outright lies in the ReachOut Psychosis program:
1. A “What is psychosis?” reality check
2. Psychosis by the (made-up) numbers
3. Sure, psychosis is “able to be treated”… whatever that means…
4. What’s causing brain damage, exactly?
5. Gee, do antipsychotic medications really have no serious side effects at all?!
1. A “What is psychosis?” reality check
The performers and writers of the ReachOut Psychosis program use the terms psychosis and schizophrenia more or less interchangeably, and identify the most common warning signs of psychosis/schizophrenia as “delusions” and “hallucinations.” They give only brief examples of what these are, such as, “the person may believe that a movie star is sending him special messages or that people in his neighborhood are plotting against him” and “Ordinary faces may seem frightening, or a gentle touch may be unbearable. People may actually hear, see, smell, feel, or taste things that are not real.”
At first glance these examples may seem self-evidently “crazy,” but if we think about them seriously, they naturally raise many questions. For example, anyone who has worked in the arts knows that one of the skills many artists try to master is the ability to make people in the audience feel as if they are being communicated to intimately, or as if the art is reflecting their own personal lives in profound ways — if someone is particularly sensitized to that with a particular artist, is that necessarily “psychotic”? In some predominantly white neighbourhoods in North America, many people (though they’ll rarely admit they do it) secretly look at black children and youth with fear and suspicion and are more likely to call the police on them — so if a black youth somehow intuits those feelings in his neighbours, is he experiencing “psychosis”? Similarly, can you imagine any circumstances where you might find a face more frightening than you would ordinarily, or when you would find a particular person touching you in a certain way almost unbearable? Are feelings only acceptable if they come with rational explanations? How do you determine the difference between a flavour you taste that is “real,” and a flavour you taste that is “a hallucination”? Have you ever believed in anything that others did not believe in, or known people who believed in things that you thought were foolish, naïve or even illusory? These are the kinds of questions about the nature of reality and illusion and about conventional versus unconventional ways of perceiving that have puzzled, fueled and inspired spiritual, philosophical, artistic, social and political thinkers for centuries.
But the writers of the ReachOut Psychosis show (on video here) and website do not discuss any of this. Instead, they act as if every reasonable person always knows exactly what “real” delusions and hallucinations are and are not, and they further assert that delusions and hallucinations are simply symptoms of a “brain disease.” Indeed, in their 27-page teacher’s manual — developed to guide student discussions after seeing the show — the writers describe psychosis/schizophrenia as a “neurobiological disorder,” “illness” or “disease” of the “brain” 122 times. Another 11 times they write that when people experience psychosis “the brain is not working properly”, or “not functioning properly” and that this is caused by “changes in the chemistry or structure of the brain”, “chemical imbalances as well as structural and functional abnormalities in the brain”, or “severe disturbance in the brain’s functioning.” They also repeatedly describe psychosis as a “medical illness” or “medical condition” requiring “medical care” from a “physician and/or psychiatrist” and emphasize that antipsychotic medications are of “vital importance” as the “foundation of treatment” that people “need” — in 27 pages, the writers of the teacher’s manual emphasize the absolute necessity of taking antipsychotic drugs 57 times.
Adding it all up, that’s 190 assertions that psychosis/schizophrenia is a biological brain disease that requires antipsychotic drug treatments. The teacher’s manual is only 8400 words long — so the writers on average do not go more than 44 words at a time without again stating that psychosis is a biological brain disease that requires psychiatric drug treatments. Notably, in one passing instance they acknowledge that the causes of schizophrenia are in fact “not known,” but they immediately follow that with the assertion, “However, it is definitely an organic (physical, biological) disease…”
They cite no scientific studies that prove these assertions. That’s because the causes of psychosis or schizophrenia are in fact not known. And there is no conclusive scientific evidence whatsoever that either psychosis or schizophrenia are physical, organic brain diseases. Further, there is no solid evidence that psychosis, schizophrenia, depression, anxiety or any so-called mental disorders are caused by genetics or consistently identifiable physical, biological processes, diseases or pathologies in the brain. In 2013 during the release of the new edition of its diagnostic manual, the American Psychiatric Association came under intense public pressure to provide clarity on this issue, which pharmaceutical advertising and mental health “education” programs like ReachOut Psychosis have done much to confuse. The American Psychiatric Association and chair of the task force leading the development of the Diagnostic and Statistical Manual of Mental Disorders finally released an official public statement admitting that, “In the future, we hope to be able to identify disorders using biological and genetic markers… Yet this promise… remains disappointingly distant.”
Questions for discussion:
Since it’s not factually true, then why would the writers of the ReachOut Psychosis show and manual emphasize to teachers and students over and over and over again — within every 44 words that they wrote over 27 pages — that psychosis is a biological, organic, biochemical illness of the brain that requires treatment with medications? What do you think the writers’ motives were, and why did they have those motives?
The producer of ReachOut Psychosis, the BC Schizophrenia Society, has intervened in court cases to support treating people against their wills with psychiatric medications, and has taken money from pharmaceutical companies. Do you think that is relevant information that the BC Schizophrenia Society should have disclosed to teachers and students?
2. Psychosis by the (made-up) numbers
The ReachOut Psychosis website and teacher’s manual claim that 3% of the population will develop psychosis, and at another point that 1% will develop schizophrenia. At one point the ReachOut Psychosis performers claim 3% of the population will develop psychosis. Later in the show, though, the performers claim that “six times” as many people will develop psychosis as have diabetes. Following statistics from the Canadian Diabetes Association, if the ReachOut Psychosis performers actually mean Type 1 diabetes, then they’re claiming that 5-6% of Canadians will develop psychosis, and if they mean Type 2 diabetes, then they’re claiming that 56% of the population will develop psychosis.
It’s difficult to know from where or how they got any of these claims about psychosis affecting 1% to 56% of the population, because ReachOut Psychosis simply utters all of the contradictory numbers as if they’re known, universally accepted facts. This practice is common in the mental health industry, because most of these prevalence numbers are indeed essentially made up — they can’t be proven, but they can’t be disproven, either. For example, one of the ReachOut Psychosis figures would seem to have come from studies like this one from the Archives of General Psychiatry. In 2007, these researchers found that about 3% of the population experience various mental disorders that include some kinds of psychotic symptoms — however, a main part of their research involved giving brief telephone questionnaires to random people, which is a crude approach that often “diagnoses” about 5-10 times as many people with mental disorders as get diagnosed under normal conditions. In addition, this study included many people who were having psychotic-like experiences due to substance abuse or medical conditions such as tumors, strokes, epilepsy and infections.
Other studies have found that as few as 0.8% or as many as 31.4% of ordinary people are experiencing one or more “psychotic symptoms” at any time. The percentage of people supposedly experiencing psychosis depends entirely on how specific researchers define things like “delusions” and “hallucinations” — which is also why there’s no medically reliable or valid way for any individual psychiatrist to “diagnose” schizophrenia or psychosis in any individual person even under ideal clinical conditions. So the underlying fact is, no one has any idea at all how prevalent “psychosis” or “psychotic” experiences truly are, because what these experiences are cannot be consistently, scientifically identified in the first place.
Questions for discussion:
If no one really knows exactly how to define or diagnose “psychosis,” why would some people assert that we do in fact know? What might their motives be?
If no one really knows how prevalent “psychosis” or “psychotic” experiences are, why do you think some people at times want to make it seem like psychotic experiences are relatively common? And why do you think other people at times want to make it seem like psychotic experiences are instead relatively uncommon?
3. Sure, psychosis is “able to be treated”… whatever that means…
The ReachOut Psychosis program repeatedly asserts that psychosis is “treatable” or “can be treated.” Although these statements are misleading, they are certainly true — anything, in principle, “can” be “treated”. But the important question is, does the treatment cure the disease? Or, at least, do the treatment’s potential benefits outweigh its potential harms?
The ReachOut Psychosis teacher’s manual admits that antipsychotic drugs do not “cure” psychosis. However, the manual also repeatedly suggests that antipsychotic medications will “effectively” and “successfully” treat psychosis, especially if people take medications right away at the first sign of symptoms and keep taking them indefinitely. If psychosis is not being cured, then what does “effective” and “successful” treatment for it actually achieve? The ReachOut Psychosis program does not explain.
Contrary to what ReachOut Psychosis claims, there is no solid evidence that intervening as early as possible with antipsychotic medications is especially helpful to anyone. Scientific evidence does show that, over periods of about 4-8 weeks, antipsychotics can reduce some people’s symptoms of psychosis. This is apparently because these drugs numb people to their own feelings and experiences — the antipsychotics in fact used to be called “tranquillizers.” As you can probably imagine, then, most people do not often feel all that much better when they’re permanently tranquillized, and many feel worse: In most scientific studies of schizophrenia, people taking antipsychotics on average will “improve” by only about 6 points more on a 168-point symptom rating scale than people taking placebos will improve.
Worse, evidence is mounting that over the long term of 1-10 years or more, antipsychotics are actually associated with poorer outcomes and increasing disability in people who take them compared to people who never took antipsychotics or took them for only a very brief period and then tapered off them. We’ll explore why that is shortly.
Questions for discussion:
If there is a lot of debate in the scientific literature about the relative effectiveness of antipsychotics for treating psychosis, especially beyond periods of 4-8 weeks, why would the ReachOut Psychosis program avoid mentioning that such a debate even exists, let alone not provide any risk-benefit discussions or statistics?
4. What’s causing brain damage, exactly?
In the ReachOut Psychosis show, the performers conclusively and repeatedly state that psychosis “causes brain damage” and indeed “each episode of psychosis causes damage to the brain.” The teacher’s manual, though, isn’t so certain about that: It states that some research “indicates” that “some people” experiencing psychosis “may” suffer brain damage.
The performers also repeatedly state that “early intervention” with antipsychotic drugs “will prevent this brain damage.” The teacher’s manual, though, never says that.
The actual scientific research has found that there is an “association”: some people who’ve experienced psychosis seem to at times also have some brain damage. No one can explain why or how this might happen. Notably, there is growing evidence that early childhood traumas may sometimes cause long-lasting impacts on brain structure and function, and can lead to a greater likelihood of having psychotic-like experiences later in life. However, this association is even stronger for people who’ve experienced trauma or psychosis and who’ve taken antipsychotic medications. There’s growing evidence that the antipsychotic drugs that some people take to treat psychotic symptoms could be causing brain changes and brain damage.
But there are many more harmful side effects of antipsychotics about which there is no debate at all — we’ll examine some of those next.
Questions for discussion:
If it’s not clear that schizophrenia or psychosis can cause brain damage at all, why do you think ReachOut Psychosis repeatedly asserts that even one experience of psychotic feelings causes brain damage?
If there is scientific debate about whether it’s psychosis, childhood trauma, or antipsychotic drugs that may be causing brain damage in some people, why would the creators of ReachOut Psychosis not even mention this?
5. Gee, antipsychotic drugs really have no serious side effects at all?!
The ReachOut Psychosis program never discusses the risks of antipsychotic medications. The teacher’s manual only briefly mentions that some people may not want to take the medications due to possible “unpleasant” side effects. To learn anything about these side effects, you actually have to leave the ReachOut Psychosis website entirely, following a reference link to a BC government website about Early Psychosis Intervention.
There, one document discussing the importance of antipsychotic medications includes a mention of a few side effects such as “dry mouth” and “feeling tired.” The document also mentions “weight gain” and “unwanted movements.” That’s about all the document says about these topics, though — along with a bit of advice on how to mitigate these few, minor-sounding side effects.
Antipsychotics are actually among the most powerful and dangerous drugs that physicians ever prescribe for non-life threatening conditions. Most of them are not approved by Health Canada for use in children or youth, yet doctors and psychiatrists prescribe them “off-label” even though their safety in young people has barely been studied. You can see some of the most common side effects of antipsychotics listed on pharmacology information websites. These sites also explain that antipsychotics block the functioning of key chemicals used in brain and body communication systems, and that’s why these drugs can have so many very serious side effects. For example, antipsychotic drugs disrupt the body’s natural metabolic processes so much that they can typically cause people taking them to gain 10 kilograms or 22 pounds in the first year alone. (See also here.) Other side effects of antipsychotics can include loss of bladder control, kidney damage, liver failure, memory loss, and a host of other serious problems. Antipsychotics will also cause many people taking them to develop diabetes — as high as 30% of people within five years.
The “unwanted movements” that the government document mentions refer to two other common side effects of antipsychotic drugs: Akathisia and tardive dyskinesia. Akathisia is a term to describe how an antipsychotic can make a person feel extremely uncomfortable, restless and agitated in his or her own body for long periods of time. Akathisia can sometimes become so unbearable that it can make some people become suicidal or violent trying to escape it. Some studies have found that as many as 25% of people who take an antipsychotic will experience akathisia.
Tardive dyskinesia is a motor dysfunction like Parkinson’s Disease that results from neurological damage caused by antipsychotics. This neurological damage can cause anything from legs shaking uncontrollably and continually to a tongue sticking out of the mouth at random times. Within a year, about 2-7% of people who take antipsychotics will develop tardive dyskinesia, and after 10 years nearly 100% of antipsychotic users will have it. It is often incurable.
In a percentage of people taking antipsychotics (ranging in different studies over time from about 0.01% to 3.2% of people), these drugs may even cause Neuroleptic Malignant Syndrome. This is a neurological meltdown that can put people into a catatonic stupor and is fatal in about 20% of cases.
Mounting evidence also shows that antipsychotics can be very difficult to stop taking, and that users must sometimes taper down off the drugs slowly over months or even years so that their bodies and brains can slowly readjust, or else they risk experiencing emotionally disruptive and physically painful “toxic withdrawal syndrome.”
Questions for discussion:
If the potential side effects of antipsychotic drugs are so serious, why do you think the ReachOut Psychosis program, and even the BC government website on Early Psychosis Intervention, would not anywhere clearly explain the risks to young people and parents?
If a person is already experiencing extreme psychological distress, do you think it is good to give the person a drug that could likely cause extreme restlessness and agitation, permanent motor dysfunction, or rapid, massive weight gain?
Based on a recent study of antipsychotic prescribing rates in British Columbia, we can statistically estimate that every year about 500 BC children and youth are developing diabetes from antipsychotics they are being prescribed, 500 are developing tardive dyskinesia, and 1 child in BC is dying every year from Neuroleptic Malignant Syndrome. Do you think young people and parents should be made more aware of this?
Every province and state in North America has laws that allow psychiatrists to force people to take psychiatric drugs against their wills. Many people assume that someone must be “dangerous” to be forcibly treated, but that is not the case in British Columbia — read the criteria for involuntary admissions in Section 22(3) of the BC Mental Health Act. Considering how harmful antipsychotics can be, do you think it’s fair that some people are being legally forced to take these drugs?
Considering all of what you have just read, what do you think about the BC Schizophrenia Society’s ReachOut Psychosis show and the BC government’s Early Psychosis Intervention program?
If you asked the BC government, the BC Schizophrenia Society, or any of the other organizations involved in creating ReachOut Psychosis about all of these factual inaccuracies and missing information that this blog post has drawn attention to, how do you think they would they respond?
Author’s disclosure: Nobody paid me anything to write this blog post. I was driven by sheer madness.