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This report was first published in Mad In America on 21st August 2024

In this interview for MIA Radio, Brooke Siem speaks with David Taylor and Mark Horowitz about their publication of the Maudsley Deprescribing Guidelines, which is of particular note since the Maudsley Prescribing Guidelines is a leading text in medicine worldwide.

David Taylor is the Director of Pharmacy and Pathology at Maudsley Hospital and a Professor of Psychopharmacology at King’s College in London. He is also the editor-in-chief of the journal Therapeutic Advances in Psychopharmacology. Beyond academia, he contributes significantly to public health policy as a member of the United Kingdom’s Department of Transport expert panel that introduced drug-driving regulations. He is also a current member of the UK government’s Advisory Council on the Misuse of Drugs and is the only pharmacist to have been made an honorary fellow of the Royal College of Psychiatrists. David is the lead author of the Maudsley Prescribing Guidelines, a role he has held since their inception in 1993.

The Maudsley Prescribing Guidelines have achieved significant success, with over 300,000 copies sold across 14 editions and translations into 12 languages. David has also authored 450 clinical papers published in prominent journals such as The Lancet, BMJ, British Journal of Psychiatry, and Journal of Clinical Psychiatry. His work has been cited over 25,000 times.

Mark Horowitz is a clinical research fellow in psychiatry at the National Health Service (NHS) in London. He is a Visiting Lecturer in Psychopharmacology at King’s College London and an Honorary Clinical Research Fellow at University College London, in addition to being a trainee psychiatrist. Mark holds a PhD from the Institute of Psychiatry, Psychology, and Neuroscience at King’s College London, specializing in the neurobiology of depression and antidepressant action. He is the lead author of the Maudsley Deprescribing Guidelines and an associate editor of Therapeutic Advances in Psychopharmacology.

Mark co-authored the recent Royal College of Psychiatry’s guidance on stopping antidepressants, and his work has informed the recent NICE guidelines on the safe tapering of psychiatric medications, including antidepressants, benzodiazepines, and z-drugs. He has collaborated with the NHS to develop national guidance for safe deprescribing for clinicians and has been commissioned by Health Education England to prepare a teaching module on how to safely stop antidepressants.

Mark has published several papers on safe approaches to tapering psychiatric medications, with contributions in The Lancet Psychiatry, JAMA Psychiatry, and Schizophrenia Bulletin. His interest lies in rational psychopharmacology and the deprescribing of psychiatric medications, which is deeply informed by his personal experiences of the challenges associated with coming off psychiatric medications.

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

Siem: Okay, here’s my first question. Who’s Maudsley? What is Maudsley?

David Taylor: Henry Maudsley was a psychiatrist in the Victorian era. The Maudsley Hospital was founded on the basis of a need for treatment of shellshock after the first World War. It’s arguably Europe’s leading institute for psychiatry research. It’s famous for the research that comes from it and the books published by people who work there. One of those books is the Maudsley Prescribing Guidelines, and one of them is the Maudsley Deprescribing Guidelines.

Siem: Thank you both for being here. David, you had a big hand in the Maudsley Prescribing Guidelines, correct?

Taylor: When I first started at the Maudsley in 1993, there was a guy called Rob Kerwin, a professor of neuropsychopharmacology. He had the idea of producing an evidence-based prescribing guide for mental health practitioners. We produced something in 1994 which we were very proud of. It’s 14 pages long and has almost nothing in it, but it was a start. Now, Most English-speaking countries use the updated editions as a guide to prescribing in psychiatry.

Mark Horowitz: David’s too shy to say, but it’s the most widely used psychiatric prescribing book in Europe, in the UK, in Australia. Every psychiatrist I know has a copy of the Maudsley. It’s a very widely used book.

Siem: The Prescribing Guidelines came out in the early ’90s, but it took 30 years to get the Deprescribing Guidelines. What brought you to write this book, and why is it important to you?

Horowitz: I’m from Australia originally. I moved to London to do a PhD at the Institute of Psychiatry. In 2011, I did a PhD in the neurobiology of depression and how antidepressants work. At the end of that PhD, I read a paper about withdrawal effects from antidepressants. At that point, I’d been on an antidepressant for 13 years.

I started antidepressants as a miserable third-year medical student, and I continued them for more than a decade. When I read that paper, I hadn’t heard about withdrawal effects which I found startling because I thought drugs that cause withdrawal also cause tolerance, which means they wear off over time. Also, drugs that cause withdrawal tend to have negative effects. For example, benzodiazepines are not widely used in the UK or Australia because of their toxic effects.

I wondered if the antidepressants were even effective after 10 years and if they were creating negative effects. I had fatigue, narcolepsy, and a lot of impaired concentration and memory, so I started to wonder if it was due to the antidepressants themselves.

So, I decided to try to come off my antidepressant. I read all the papers in my field and they all universally said the same thing: antidepressant withdrawal effects, which they call “discontinuation effects,” are mild and brief and you can stop in a few weeks with no major issue.

Then, because I’m a millennial, I went online to check what people had to say, and it was a different story. Some people got incredibly unwell coming off antidepressants, and it took months and years. I didn’t know who to believe because I’m an institutionalized person. I’ve got six academic degrees. I’m used to listening to professors. So I split the difference and decided to come off my 10 mg of Lexapro over four months. I halved my dose four times and used the equipment in my molecular biology lab to get a liquid and go down by a half every month, then a quarter, an eighth, and a sixteenth. I thought I was being pretty damn careful.

At a 1 mg dose, the floor fell out of my life. I started having trouble sleeping. I would wake up in the morning in full-blown terror, like I was being chased by a wild animal. This lasted throughout the day, for hours and hours. I ran until my feet bled because it gave me a bit of relief. I was dizzy and things around me felt dreamlike. It went on for week after week. I thought, “I can’t keep going on like this” and slowly went back on the medication. Over a few weeks, things settled down.

It was the scariest experience of my life, and nothing like the issues that put me on the drug in the first place. At that time, I was working at the National Psychosis Unit. I talked to a few academics and discovered this paper showing that very small doses of medication can have very large effects, and that’s why you might need to go down very carefully at the end, with the last couple of milligrams being the hardest to come off. A lot of different psychiatrists laughed at me and said, “These are homeopathic doses. How could you have trouble?” But when I went to talk to David Taylor, he instantly said, “That’s the law of mass action. When there’s not much drug in the system, every milligram of drug has a very big effect.”

I tried to come off Lexapro again in 2018. At that point, I understood that the leaders in my field had dismissed and minimized the issue. SurvivingAntidepressants.org had a lot more insightful advice. I followed what they recommended and found it much easier to come off my drug than before. Also, a lot of the issues I’d had with fatigue and concentration and memory started to get better.

I teamed up with David and we wrote an article published in The Lancet Psychiatry, where I outlined what I’d learned on these websites and combined it with some of the academic work that looked at the way the drugs affect the brain. That article led to increased attention to the issue in England. The Royal College of Psychiatrists got us to write some guidance for them on how to stop antidepressants. The NICE guidelines, which are the government guidelines in England, adopted our approach. I’m now working with the main pharmacy service in the country to put out this guidance to doctors and pharmacists.

David and I realized there wasn’t a definitive, authoritative book for clinicians on how to stop medications. We thought we’d write it. It took three years and hundreds of pages.

Siem: David, what is the story from your perspective?

Taylor: My journey is not similar, but it ends up at the same place. In my 20s, I had been treated with a range of antidepressants, without much success. In my 30s, I went on Effexor (venlafaxine). Once I was stabilized on that, I noticed I’d start to get withdrawal symptoms before my next dose was due. I took the pill, rather oddly, once every 21 hours. I had to do that to avoid the emergence of withdrawal symptoms, which would come on just after 21 hours, like clockwork.

I would start to feel a loss of balance, dizziness, a slight anxiety, and all of those things would get worse if I did not take the next dose of venlafaxine. As it happens, venlafaxine didn’t really help me, so I decided to stop taking it. I knew everything about stopping antidepressants, and I did it slowly, and I knew what the symptoms might be. What shocked me, though, was the severity of the symptoms. Even though I knew what was coming, and I knew the words to describe the things that I would experience, the experience of them was vastly different.

You can read “flu-like symptoms,” but you feel like you’ve got a pretty bad flu. That’s not great on its own, but then you read about dizziness, anxiety, irritability, mood changes, sleep disturbance, color intensification, and vivid dreams. I had all of those, and all of them I’d read about and all of them might have been mild or moderate, but together in constellation, it was horrible. And it was horrible for several weeks.

Then, my next instructive experience, which I ignored at the time, was that I got some funding for a helpline for patients in my department. We’d have patients ring in about their medication, we’d have expert pharmacists answer them. Occasionally I would man the line, and what we found was that the most common reason for calling us was people trying to stop antidepressants. We noticed that there is a subgroup of people who said that they had very severe symptoms and that those symptoms lasted for months, if not years. This is where my regret comes in because when I spoke to people, when I heard about people who were claiming to have had very severe symptoms, which lasted months or years, I thought that it was some kind of neurosis. I couldn’t quite bring myself to believe that it was a drug-induced effect or at least the stopping of a drug-induced effect.

I stored that observation away in my brain and as time went by, the patient line closed down and I heard more and more about people’s experiences with severe and longstanding withdrawal reactions. I came to be a believer. It’s not a common reaction to stopping antidepressants, but it’s common enough for there to be a huge number of people who have these very severe and extended reactions to stopping antidepressants.

It was a happy coincidence that Mark and I spoke at the National Psychosis Unit ward. Mark had the grit and determination to submit our paper to a very high-ranking, high-influence journal. It was the launch pad for us.

Siem: The detail in the book is unbelievable. How many drugs are outlined in the book?

Horowitz: There’s about 25 antidepressants, 25 benzodiazepines and Z-drugs, and two others. About 55 drugs altogether. The basic message is: It’s harder to stop drugs than it is to start them. The reason why it is so thick is because everyone’s a bit different. Some people have a fairly easy time coming off medication, and some people have a very hard time, which means there needs to be a lot of flexibility in how people come off. What takes up a lot of space in the textbook is different schedules for coming off for each drug—either fast, moderate, or slow—with advice on how to choose, how to adjust, and all sorts of troubleshooting to make it individualized. We tried to make it easy for any clinician or patient who wants to work with their doctor, and we do it for America, Europe, the UK, Australia and Canada.

Siem: Let’s talk about the law of mass action. What is it and why it’s important for psychiatric drug withdrawal?

Taylor: It’s tempting for most people to imagine that the relationship between the dose of medication and its effect is linear. For example, you might think that if you want to get 100% action from the drug you might take the maximum dose, and to get 50% of that action you might take half the maximum dose. But it’s nothing like that. The relationship isn’t a straight line that runs from the bottom left to the top right. The graph that describes the relationship is more like the one side of an arch. It’s quite steep when it’s near the ground and it curves over at the top until it becomes horizontal. That’s the shape of the relationship between the dose along the bottom and the activity of the drug on the Y-axis. As you increase the dose from nothing to very little, you get a rather large pharmacological effect, and when you go from very little to a little bit more, that increases massively.

When you get up towards the top of the arch, as you increase the dose, the pharmacological effect hardly increases. For many drugs when you’re on that flattened bit you can double the dose, but the activity of the drug might increase from 98% of the maximum to 99% of the maximum.

Siem: That steep drop-off happens so much earlier than the strength of the drugs on the market, if that makes sense. Is there a conclusion to be drawn that, when people’s doses go up and up, it’s not having any more effect?

Horowitz: You put your finger on it. That steep bit of the curve happens below the smallest available tablet for most medications. The smallest dose for Effexor is 37.5 mg, and for citalopram (Celexa), it’s 10 mg or 20 mg, and for Lexapro it’s 5 mg or 10 mg. Doctors and pharmacists in general think, well, it’s a very low dose. What they mean by that is that it’s the smallest tablet available. But in terms of effect on the brain, it’s not that low a dose because of that steep curve, and so when people are told to halve their tablet and then stop it, everyone thinks they can just step off. But because of this steep curve, it’s like walking out the seventh-floor window. You think it’s at the bottom, but you’re still kind of high up on the building. Then, when people fall out of a seventh-floor window, doctors say, “If you’ve had trouble coming off such a low dose, you must need the drug.” They don’t see that the patient has come down from this high level, and that’s why a proportion of people on long-term antidepressants need doses beyond commonly available tablets, whether that’s a liquid version of the drug or compounded capsules, or some other way of making up smaller doses.

Siem: You came to this conclusion through the PET scans, correct?

Horowitz: The forums recommended coming down by 10% of your dose every month, and I didn’t know why that made sense. Going down in smaller amounts makes sense, but why would it get smaller and smaller? Then I came across this nuclear imaging that gave people different doses of medication and scanned their brains to see how big an effect it had on their receptors and it followed the same arch David explained. It exactly matched what the patients had worked out by trial and error.

Siem: Are there any precautions or limitations that people new to this topic should be aware of when using the Maudsley Deprescribing Guidelines as part of their practice?

Taylor: A core principle is that the process should be patient-led rather than clinician-dictated. It’s the patient who’s experiencing the withdrawal. The tapering regimen should be tailored and adjusted to the patient’s experience, and that works in both directions. It should be slowed and more hyperbolic in people who have severe and longstanding reactions. It may be quicker and shorter in people who have very limited reactions. It’s worth saying there is a group of people who seem to be able to stop antidepressants without any problems at all.

There seems little point in prolonging the withdrawal phase of the medication, especially given that abruptly stopping antidepressants doesn’t make relapse more likely. The whole field is rather confused because of withdrawal reactions mimicking relapse, but what I’m trying to say is that there’s a good reason to go slowly even with people who don’t have a severe reaction, because they’ll probably benefit in the longer term.

Siem: It’s also a book I would recommend to the family members of somebody who’s in withdrawal because it can help them understand, in plain language, what we think is going on.

Horowitz: There are a lot of misconceptions about this material, and I wanted to correct them. What should doctors be aware of when they crack the book open? There’s an increased understanding that there are withdrawal effects from antidepressants, but people still don’t quite get their heads around protracted antidepressant withdrawal. David said that when he first heard about it, it sounded like the product of a neurotic mind. If I had encountered this stuff in inpatients, I would have had David’s exact reaction. I was taught antidepressants are as safe as Advil or Aspirin, so I would have thought it was a bit odd that people were in bed for months with dizziness and panic attacks. A lot of my colleagues still think that, and I have some sympathy for them because it sounds so out of left field. If I hadn’t had firsthand experience, I don’t think I would have had enough insight into it to believe it. I understand the skepticism from my colleagues. It doesn’t fill me with pleasure, but I understand where it comes from.

Part of the point of the book was to try to explain some of this. For example, the textbooks say that withdrawal should come on within three to four half-lives of a drug because the drug has left your system The half-life of most antidepressants is about a day, so it should come on in a few days, but often, that’s not what happens.

I started seeing people coming in a few weeks after stopping an antidepressant with withdrawal effects like electric zaps, dizziness, headache—really classic withdrawal symptoms. I first thought, “This can’t be withdrawal. It can’t come on weeks afterward.” I saw several cases, and I thought it wasn’t typical.

Now, there are a couple of things that make me believe that it is withdrawal. First, there’s an imaging study that shows that the brain elimination time for antidepressants can actually be weeks. Although the half-life in the blood is a day for most antidepressants, it seems to leak out slower from the brain. I don’t know if that means it’s sticky in the central compartment, but it does make sense as to why it might take weeks for withdrawal to come on.

In another study, the time to withdrawal onset averaged four weeks in a group of patients and the standard deviation was 13 weeks. In other words, some people in this group experienced withdrawal effects that came on months after stopping. There’s clearly more variation than the textbooks indicate, and that causes a lot of confusion.

Second, there is protracted withdrawal syndrome. Patients come in and say, “I stopped my antidepressant three months ago. When I stopped it, I developed terrible symptoms like panic attacks, terrible mood, and I’m still there three months later.” The doctor says, “Well, the drug is out of your system. It’s been out for weeks. It couldn’t be because of the drug. This cannot be withdrawal. You must have developed a new-onset panic disorder or maybe you’ve developed multiple sclerosis, we need to send you to a neurologist.” That’s what happens. People get sent around to specialists where they get told they’ve got a mental illness and they should take more medication. I might have believed that as well, but now I see many, many people with those long-lasting symptoms.

The way it makes sense to me is the brain adapts to the drug when you’re on it. If you take a drug that increases serotonin, your body will become less sensitive to serotonin. It adapts because of homeostasis. When it’s too hot outside, we sweat. When it’s too cold outside, we shiver. If your brain is exposed to too much serotonin, it becomes less sensitive to serotonin. You can see that in just a few weeks of being given an antidepressant on brain imaging. Now, when you stop the antidepressants, your serotonin levels go back to normal. But your brain doesn’t just snap back into how it was before the drug was there. Those adaptations, those changes, take a while to get back to normal. In fact, in one study, after stopping antidepressants in patients, there were changes in the serotonin system for up to four years after stopping.

In animal studies, findings are similar: after stopping antidepressants, there are changes to the hormonal system and the serotonin system that last for more than a year in human-equivalent time. The analogy that comes to my mind is when you go to a loud concert, your eardrums become less sensitive to sound. If you walk out into a quiet street, people around you sound muffled for a few minutes. That’s actually a sound withdrawal syndrome. Now, when you shut the door on the concert, the sound disappears in a second, but it takes a few minutes for your eardrum to readapt to normal levels of sounds.

The same is true for exposure to psychiatric drugs. When you stop them, your liver and kidneys metabolize them in a few days or weeks and they’re out of your system. But the adaptations that your brain has made to the presence of those drugs can last, we think, for months or years. That is probably why withdrawal syndromes can last for so long, because of the residual effects on the brain after stopping the drugs. That’s why they can last longer than the drug takes to leave the system.

We haven’t done much research into what causes protracted withdrawal. It hasn’t been seen as a legitimate condition. There hasn’t been brain imaging or the study of hormones, so we don’t know. But I think it’s pretty clear that people’s nervous systems are affected because they get neurological symptoms, they get psychological symptoms, they get bodily symptoms, so something is clearly going on. We know that these changes can stick around. We think that that probably occurs more often if you come off too quickly. It’s a good reason to come off slowly just to avoid the risk of that happening to you because I’ve seen it. I’ve got an inbox full of people with that condition, and it really upends their lives. It can be absolutely devastating for some people.

Siem: How do the Maudsley Deprescribing Guidelines handle polypharmacy? What do we do when a patient is on two or more drugs?

Taylor: We skirt it to a large extent. It’s covered more in the Maudsley Prescribing Guidelines, but even there, it isn’t covered in any depth. The number of combinations in polypharmacy regimen trends toward the infinite. It’s almost impossible to create or gather a report on any information on particular combinations simply because there are so many different variations of those combinations.

Siem: Are there any loose guidelines regarding polypharmacy that you have noticed clinically?

Horowitz: We’ve put in two broad principles. First is to either think about the drug that has the most harm compared to benefit, or to think about the drug that’s easiest to come off of. If someone has a very strong feeling that they want to stop one drug over another, then the person’s preference should be primary. If they’re not sure, you might look at a series of drugs and work out which might have some benefit for them or no benefit and which ones are causing the most harm. The other approach that I often take is it’s nice to be able to have a win when a patient wants to come off medications. It’s nice to choose something easy. You might choose a drug that’s easiest to come off, and that’s often the drug that’s been started most recently.

Siem: Mark, you have dealt with your fair share of pushback doing all the work you’re doing. I’m wondering how the Maudsley Deprescribing Guidelines has been received amongst prescribers, and what has your experience been with the actual publication of the book?

Horowitz: As with all my work, it’s been very mixed. Some clinicians and psychologists have said having a guideline has made their practice more streamlined. Mainstream academic psychiatrists have mostly ignored it, but a lot of GPs, pharmacists, and nurses have written to me and said that they use it in their clinics, but that there are practical barriers.

A lot of patients have bought the book. In some ways, I feel that it’s a little bit sad that the patient had to buy the book to give to their clinicians. I wish that doctors would have an interest in it, because obviously, I think being a good doctor is knowing how to start medication, knowing when to stop, and how to stop. I think it’s part of good quality practice. But patients have taken it upon themselves to try to get clinicians on board.

Taylor: I get people writing to me, emailing me, thanking me. I keep an eye on the Amazon reviews. Most of those are very positive. Although Mark and I wrote the book for clinicians, it’s interesting that almost all of the reviews on Amazon are from patients. I haven’t had much in the way of negative feedback. Part of the reason for that may be that a lot of people in the field of psychiatry have this kind of semi-delusion that I know what I’m talking about, so they might be wary of challenging me in my own field, so to speak.

Although I will be happy to be challenged on it, I don’t want people to run away with the idea that I’m anti-medication, anti-psychiatry, or anti-antidepressants. I’m not at all; I’ve taken lots of psychotropics, sometimes with considerable success. But I do think there needs to be a balance between the massive amount of promotion that there is funded by pharmaceutical companies to start these medications, and what limited information there is on how to stop the medication. As Mark rightly points out, that’s as important if not more important than how you start them.

Siem: I think it’s amazing that so many patients are taking it upon themselves to get this book because for so long, so much medical research has been behind paywalls. I see that as a huge, huge win.

Horowitz: Some parts of it are a bit academic, but it is written in a way that any informed member of the public could understand it. We foresaw that a patient ideally would be working with a clinician and would be able to inform themselves about what’s the best way to come off their medication. More and more in the modern age, patients are taking their health into their own hands and informing themselves. I think this could be, in part, why we kept the language open to being understood by the public. I think this could generate conversations between patients and their clinicians about what would be the best way to come off medication.

Siem: To close, I would love you two to dream a little bit. Where do you hope the research around withdrawal goes? Where do you hope we’re going with all of this and what can people do to continue to spread the good word?

Taylor: We produced a book, which for each drug has three different ways of stopping the medication. I would like research to help us define regimens for withdrawal that enable people to stop antidepressants with as few problems as is physically possible. That would make a huge difference to a huge number of people in the world. The use of antidepressants is astronomical. There are millions of people taking them around the world, and those millions of people will ultimately have to stop taking them. I would hope that research will tell us exactly how we can get people stopped with as few problems as possible.

Horowitz: First of all, we’re doing research in Australia to look at whether stopping in this hyperbolic way improves over stopping the old-fashioned way. A lot of studies suggest that it will, but it will be good to show it because that will influence guidelines around the world, which like to see randomized controlled trials. Then the next step is to individualize for people so there’s not all this trial and error. Because at the moment, there definitely is an aspect of trial and error. It’d be great to take away that sort of uncertainty away from people.

I’m very interested in knowing what’s happening in people’s brains on long-term medications. Are there ways to reverse it? Is it better to give people short-term medication to avoid some of those long-term consequences? Is there any intervention to help people who suffer from these protracted withdrawal syndromes? I think a lot of the research that suggests people should use long-term medication is flawed because withdrawal effects aren’t taken into account. I’d be aware that a lot of the guidelines recommend long-term antidepressants and other drugs from studies in which they stopped very quickly. They found the people who stopped them felt worse. No one ever looks at withdrawal effects. It could be that actually, the reason why people feel worse is because of withdrawal, in which case the drugs are not quite as effective at preventing relapse as people think. I think a lot of those studies need to be re-looked at and withdrawal taken into account so that might have quite a big influence on what the results of trials are.

Siem: Wonderful. Thank you so much. Do you have any closing remarks or any asks of the audience?

Horowitz: To any clinicians, I would implore you to try stopping medications more slowly, especially at the end, and using things like liquids to make it easy for patients. It’s very gratifying as a clinician to see people come off the drugs that they thought they couldn’t stop. I hope other clinicians out there get that experience.

Siem: Mark and David, thank you so much for being with us today. Again, the book is the Maudsley Deprescribing Guidelines and it can be found on Amazon. Thank you both. Keep up the good work.

The post The Maudsley Deprescribing Guidelines: An Interview with David Taylor and Mark Horowitz appeared first on Mad in the UK.

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Justin Garson is a Professor of Philosophy at Hunter College and The Graduate Center, City University of New York, and a contributor for Psychology Today and Aeon. He writes on the philosophy of madness, the evolution of the mind and purpose in nature. His most recent book is Madness: A Philosophical Exploration, published by Oxford University Press in 2022. He is also the author of the forthcoming The Madness Pill: The Quest to Create Insanity and One Doctor’s Discovery that Transformed Psychiatry, which will be published by St. Martin’s Press.

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

Full transcript on Mad in America

The post Is Madness an Evolved Signal? Justin Garson on Strategy Versus Dysfunction appeared first on Mad in the UK.

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On the Mad in America podcast this week, we continue our reader Q&A with Mad in America founder Robert Whitaker. In Part 1, we discussed Mad in America, the biopsychosocial model and the history of psychiatry. For Part 2, we will be covering reader questions on pharmaceutical marketing and issues with psychiatric treatments including psychiatric drugs and electroconvulsive therapy. Thank you to all of you who took the time and trouble to send in your questions.

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

James Moore: Mary has sent in some questions and her first is, in the past, there were other tools used to at least try to help folks in crisis. Has anyone investigated how alternative therapies were diminished and basically vanquished? Was it related to medical insurance or government programs?

Robert Whitaker: It was related to 1980 and the third edition of the Diagnostic and Statistical Manual. If you go before 1980, back to DSM-I and DSM-II, those books tell of how psychiatric disorders often are reactions to difficulties in the environment or, say, to stressors in the family. There was always a core group of biological disorders, but that was a small group.

That was the understanding in the ’70s, that social things did count. Then what happened in the 1970s? Psychiatry as a profession said, “we’re under siege. Our future and our survival are threatened. Why is it threatened? Because there is an anti-psychiatry movement saying we function more as a means of social control than as medical doctors.” Benzodiazepines, their most famous and popular drugs, were seen as addictive and harmful. Their psychotherapy was not seen as any better than talk therapies offered by psychologists and counselors. There was a report that their diagnostic categories were invalid and unreliable. And finally, there were two things culturally that happened that made psychiatry say, we need to remake ourselves.

One was the movie One Flew Over the Cuckoo’s Nest, which presented the staff in a mental hospital as crazier than the patients and, frankly, brutal and oppressive. And then there was a paper published in Science by David Rosenhan. What he did in this experiment was he sent ordinary people to mental hospitals and they said they were hearing words like thud, etc. They were all admitted into the hospital and diagnosed with schizophrenia and never found out as imposters even though they stopped complaining about that word and never behaved poorly.

Now, there have been questions raised about that study but, nevertheless, in the 1970s, that hit like a bang, that we don’t know what insanity is. Five days or so after that paper appeared, the American Psychiatric Association (APA) said we have to redo our diagnostic manual. We’re going to set up a task force. And as they did this, they said, how can we rebrand ourselves? We can rebrand ourselves as doctors in white coats, as medical doctors. Now, how do you do that? You call psychiatric difficulties diseases of the brain.

There was no research that justified this rebranding, this re-conceptualization of what happened to human beings. This is new.

The minute that the APA published DSM-III, they had to sell this new model of thinking to the public, and they launched a big PR effort with money from the drug companies. Once that happens, health insurance companies say okay, if it’s a disease in the brain, why should we pay for talk therapy? Why should we pay for anything else? We’ll just pay for you to get the pill that fixes the disease. So that’s what happened.

But it’s important to understand that it happened because American psychiatry in the 1970s felt its future as a medical discipline was under siege. It was being threatened. And they rebranded themselves as doctors in white coats, they literally put on white coats, and what do doctors in white coats do? They fix illnesses in the brain. That’s when we begin hearing about chemical imbalances. And that’s when this completely false narrative was told to us.

Moore: A follow-up question from Mary. She asks, Did psychiatry become involved with the “Decade of the Brain”? Just for context, the decade of the brain was defined as the period between 1990 and 1999, and it was part of a large effort involving the National Institute of Mental Health and the National Institutes of Health to enhance public awareness of the benefits to be derived from brain research.

Whitaker: Yes, these fit in hand in glove. Part of the decade of the brain was the message to the public that we were discovering all these incredible things about the brain, making great advances, and of course, we’re going to decode the human genome during this time as well. So that becomes the larger context. Society is saying, “Wow, we’re learning so much from brain research.” And now psychiatry says, we’re at the forefront of this work because we’ve discovered the molecule for depression. We’ve discovered the molecule for psychosis and schizophrenia, and we now have drugs that fix those imbalances like insulin for diabetes.

That fits into the decade of the brain like a hand in a glove—this was the promise being realized. And that’s why we heard that drugs like Prozac made you better than well. We can tinker with the brain and we can give you the personality you want and we can make you happy. That was part of the insanity that was being pitched to the public, that we are all just sort of robots dependent on our chemicals. The decade of the brain provided the context to make the chemical imbalance story resonate with the public.

Moore: The next question is from Dan, who says psychiatry as a whole is extremely reluctant to acknowledge that the current system of psychiatric mental health care has harmed large numbers of people. However, for the rest of medicine, this is not an existential crisis. The general practitioners who currently prescribe the majority of antidepressants could drastically cut back their prescribing and it wouldn’t affect them that much. They have lots of other things to worry about. What could be done to get the rest of medicine involved? If we could get the rest of medicine to look at the evidence, then maybe they might be willing to apply some pressure to help change things. What could be done to force the issue?

Whitaker: That’s a great question. Obviously, the problem is the other doctors, especially the GPs and primary care physicians, they don’t know the evidence base for these drugs. They just presume that they’re helpful because that’s what they are told by their colleagues in psychiatry. Now, I do think there’s a general message starting to get out to primary care doctors that these antidepressants aren’t so great. Even if they don’t know the literature, there is an increasing acknowledgement that often the drugs don’t work and there are withdrawal problems.

How does the general practitioner get this message? Does it come through the research literature, or does it filter through the public dialogue as a whole? It filters to them through the public dialogue as a whole. They’re not reading the psychiatric literature. I do think that Mad in America and others have helped bring up the story of long-term difficulties with these drugs. I think that antidepressants have lost their lustre even with GPs. Now the problem for primary care physicians is that they get patients coming to them who are still living with that mainstream media message that an antidepressant is a solution to all ills. So they come to the GP and say, I want an antidepressant, that’s why I’m here.

There is something called the allopathic compulsion, which is an old term saying that when someone comes to an allopathic doctor, they don’t expect to go home with advice. They expect to go home with a pill or some form of treatment. When their primary care physician prescribes a pill, it fulfills that allopathic compulsion. It’s a medical ritual. Also, the GPs unfortunately are feeling that they have to get this person out of the office in 15 minutes. They can’t sit down with the patient for an hour and talk about life changes.

So really, we need psychiatry to say loud and clear, do not prescribe an antidepressant on the first visit, especially for the mildly depressed. We need psychiatry to give a message to the medical community that these drugs need to be used differently. Is that possible? That’s the hope.

Moore: Here in the U.K., there is more talk about deprescribing, acknowledging that if an older person ends up on a cocktail of psychiatric drugs, blood pressure drugs, pain medication, sedatives, then the cumulative burden of all those medications actually just creates longer-term patients.

Whitaker: I think the U.K. is a leader in this deprescribing area. It’s not happening so much in Scandinavian countries or Latin American countries. It’s starting a little bit in Brazil. But the U.K. is the one that’s pushing it forward and I think it’s because there is a critical psychiatry network there that has some reputation within the larger field. There are some good consumer groups there too. I think the National Health Service is also more responsive to the concerns around money and creating permanent patients with all the corresponding physical problems. Deprescribing is touched upon in the United States now and then, but it’s not nearly the topic it is in the U.K. It just hasn’t entered the mainstream narrative the way it has in the U.K. But hopefully, as the U.K. does this and makes it a routine part of practice, that practice will be exported to the U.S. and other countries. That is a hopeful sign for sure.

And that goes back to something on we can learn from each other. Mad in America, by being able to report on what’s happening in the U.K., helps bring that story to other countries as well as practitioners.

Moore: The next question is from DB. Rumor has it that within medicine, psychiatry is seen as the least intellectually taxing medical field, is there any truth in this?

Whitaker: That’s a long story going back to when psychiatry first emerged as people who ran asylums. There has long been a sense that psychiatrists were not real doctors, although, in the 1950s, they had their moment in the sun. Then, in the 1970s, The New York Times published an article called “Psychiatry’s Anxious Years, “and part of it was that medical students looked down on those who chose psychiatry as their speciality. And why did they do that? Because they didn’t think it was a real medical speciality, and that people who went into this discipline weren’t—now I’m just going to say what the thought was—they weren’t as smart. Psychiatry attracted people who weren’t just quite up to snuff with the other doctors.

And by the way, that article said how few doctors and residents were choosing to go into psychiatry.

It’s still the case. If you look at American psychiatrists now, so many of them come from abroad. I don’t mean to be diminishing people from other countries in any way, they obviously can be great doctors. But you see a lot of American psychiatrists now that are not American-born. And the reason for that is there is still a prejudice against psychiatry as a discipline, that it isn’t as difficult and as demanding as the other disciplines. It’s the surgeons and the heart specialists who see themselves at the top of this pyramid of doctors. But if you have this pyramid, there’ll be many people thinking psychiatrists are at the bottom.

Moore: We’re going to move on to a few questions now about the use of psychiatric drugs and other treatments. So this first one is from John, who says, I see people of all ages who get on one drug or a cocktail of psychiatric drugs and do well in the long term with maybe some drug changes and adjustments of dose along the way. They can often function better or hold down a job. In other words, the drugs seem to have made their life better. Is that possible?

Whitaker: Of course. When we talk about drugs worsening long-term outcomes, we’re looking at what is the spectrum of outcomes you see in nature. You can look at that as what happened before the drugs, but you can also look at studies in which you have medicated and unmedicated patients. And your form of care is doing harm if, in the aggregate, it’s worsening outcomes. In other words, you see more chronicity, and you see more functional impairment. You see that time and time again in long-term studies of antipsychotics, antidepressants, in fact all psychiatric drugs.

For example, with depression, the natural course of depression was seen as, if you have a case of pretty severe initial depression, 50% will get better within some period of time. We are talking about hospitalized depression. Half will get out and will never have another episode of depression. There was a second group that will also get better, and then maybe every three or four years have another episode. Only about 20% [of first-episode patients hospitalized for depression] would become chronically ill.

So in order to have an antidepressant therapy not do harm, it has to beat that natural spectrum of outcomes. However, what we see with antidepressants is that fewer people on the drugs, over the long term, are doing well in terms of remission of symptoms, time without symptoms, and employment levels. That said, there are some people on antidepressants who do fine and find them helpful. There are some people on antipsychotics, of course, who do fine and find them helpful.

For instance, we know from the Harrow study that of the people with a diagnosis of schizophrenia who got off medications, 40% were in recovery long term versus 5% for those on meds. So the 5% on meds, they are doing well, but it’s still lower than the natural recovery rate you see with the off-meds group.

When a person says “I’m doing okay on these drugs,” they are one of those people (with a better outcome). Maybe I’m on one drug, two drugs or three drugs, and I’m working and I have a decent social life. Even then, you don’t know what that person’s life would have been like if they had been given a different form of care right from the start. Maybe one that minimized long-term drug use, or focused on psychosocial care and life changes. What would their life have been like? We don’t know. That person doesn’t know what that possibility might have been.

So even their self-judgment is not proof of the merits of the drugs, even for themselves, because they lack knowing what would have been possible for them. I just want to say that some people are doing fine on the drugs and I’m so happy when that happens. That’s great. But you have to look at the evidence base over the long term when you think about how drugs might be used. And even for the individual, you don’t really know what the course of your life might have been if you hadn’t gone down this medicated path.

Moore: Another one on drugs and treatments from Neil, who says in light of the extensive documentation of harms associated with the long-term use of anti-psychotics and SSRIs, I’m interested in Bob’s thoughts on whether there is still potential for a consumer or survivor defined psychiatric harm reduction approach to medication that looks at psychiatric medication as a short term option that needs to be reinforced with other forms of psychological, social, and community support for individuals.

Whitaker: That’s why we need a grassroots rebellion. We’ve talked about the fact that the change is not going to come from those in power. But if you have a grassroots, peer-supported demand for change, and if that grassroots consumer demand grows, that can lead to change.

In Oregon right now, there is funding for four respite houses that are going to be peer-run. If you have a time of difficulty, you can go into a respite house and find some safety and some time to recover. So peers formed their own narrative and as that narrative grows among the population, that really can start becoming the dominant narrative.

For example, we would not be hearing about all the withdrawal problems with antidepressants if it weren’t for the internet. That’s where the voices of patients began to spread and be heard and collected. If we didn’t have that, would you even have surveys by the professionals looking at this harm? This shows the power of the internet to give life to peer-run harm reduction initiatives and practices. That’s one of the reasons, by the way, that Mad in America has personal stories, and that we also have blogs talking about these initiatives such as respite houses.

Moore: This is from Kent who says, why is the critical psychiatry community often so skeptical of psychedelics? Unlike nearly all the failed treatments that litter psychiatry’s history, psychedelics do not constrict and darken the mind, they can expand and illuminate it. Are psychedelics not compatible with the mission of critical psychiatry?

Whitaker: I love this question and it’s timely. First of all, I’m skeptical of psychedelics being incorporated into medical practice and being seen as a form of medicine because I think that that ability to illuminate and expand the mind may start to be lost when we’re talking about clinics giving out psychedelics.

I just came back from a conference in Brazil and there was a talk about psychedelics by a practitioner who has a lot of knowledge about how indigenous people use them. He said, the psychedelic experience doesn’t happen outside of a context for taking these drugs, and you need that context for the psychedelic to be a source of illumination and expanding the mind.

But now psychiatry is adopting psychedelics as their drug and there are ketamine clinics. That’s a very different context than being in some environment where you’re going to prepare yourself for a journey.

We also have to know that psychedelics are drugs that change your mind, whether it be LSD, whether it be ayahuasca or even marijuana. So there is always a potential for harm. If you look at newly diagnosed psychotic patients that come into emergency rooms, so many of them have been doing either prescribed or illicit drugs. I know we’re not supposed to say this, but you do see that people who are using marijuana have an increased risk of having a psychotic episode.

So this question, I think, presents psychedelics as drugs that provide illumination and expand the mind. I’ve taken psychedelics a couple of times when I was young. I took peyote and I took LSD a couple of times. They were memorable experiences. I will say that afterwards, I felt my mind was a little different, more open to different possibilities. But we can’t think of psychedelics as drugs that are going to simply replace other drug therapies because that takes the experience out of context.

If I’m given a psychedelic by a psychiatrist in a clinic, I just don’t have much faith in that. We also have to remember that the history of psychiatry is about one therapy after another being hailed as the new great therapy. Now we’ve started putting psychedelics in that boat, and I think if we make it something that is prescribed by doctors, it will be an unmitigated disaster.

Moore: I guess also there’s the risk of kind of reifying this concept that the psychedelic is maybe providing something deficient or wrong in your brain. It’s continuing this idea that there’s something wrong in you that needs an external influence to correct, isn’t it?

Whitaker: That’s the whole point. When you make it a drug that’s fixing something wrong with you, the idea that ayahuasca or LSD or peyote or any of these drugs fix some known biological problem is just the height of stupidity.

Moore: Okay, a couple more on drugs or treatment. So this is DB again, he asks what was the rationale for advising people to stay on SSRIs for at least six months after feeling better. Given the longer you take the drug, the more severe the withdrawal symptoms, does this increase the chance patients will have withdrawal symptoms which will therefore be misdiagnosed as relapse? Did pharma know this and was this therefore a way of engineering lifelong customers of these drugs?

Whitaker: Maybe pharma knew that there would be trouble coming off their drugs because by the late 1970s, they were beginning to understand that research was showing your brain adapted to these drugs. In other words, it was changed by these drugs. But that’s not how the continual maintenance practice actually came about.

When antidepressants were first introduced, the understanding was that depression was an episodic disorder and it would likely resolve on its own. Antidepressants could be used to speed up that natural recovery process.

Here’s what happened though. You put people on these drugs and then they began to find that once people came off they frequently relapsed.

So, are you going to see that relapse as a return of the disease, or as a withdrawal effect?
And so after three, four, six months on the drug, you run studies where you take the drug away—and by the way, when they first did this, it was pop, abrupt withdrawal—and you’re going to see this rebound effect and you’re going to see people relapse more frequently. But that is seen as evidence for maintaining people on antidepressants.

Once that happens, are drug companies thrilled? Sure, because now they are converting episodic patients into lifelong patients, and that is a prescription for great profits. You want lifelong customers. So the drug companies are going to let psychiatry carry the ball on this and remain mute about withdrawal effects as much as possible.

Moore: The next question is from Wendy who asks, how can we work together to stop electroconvulsive treatment?

Whitaker: I’ll go back to that we’re not lobbyists. However, we do provide information about ECT. The information is that it does cause cognitive deficits long-term in a high percentage of people. There’s no evidence that it is effective beyond 30 days.

What Mad in America can do is keep on promoting and publishing this information. We have a new report coming out that’s about ECT in kids. Why you would give ECT in kids with developing brains is beyond me. But what I remember from this research is that 70% suffer cognitive deficits. Now, you would think that doctors would say, oh my God, do not give ECT to kids. But instead, the researcher sort of said, well, that’s okay because we’re eliminating the depression.

There is a long history of research showing that ECT harms the brain. When it was first introduced, it was understood to cause a “closed head injury.” That is what a concussion is. So, you’re in a car accident and you bang your head, you don’t see a gash, but you’ve been concussed.

Here’s how researchers made that connection. People who were depressed and who had suffered a closed head injury in an accident, they were not depressed for a while. What seems to happen is the body floods the brain with a sort of hormonal effort to repair the damage, and that provides an uplift. But the uplift you get from depression with ECT seems to be because it’s responding to brain damage.

Anyway, the answer is this. Know the research evidence. The evidence is overwhelming. Promote that at every possibility.

Moore: In the U.K., I know that John Read, Chris Harrop and others have been doing quite a lot of work to look at the evidence base to support ECT. In the U.K. at least, the number of psychiatrists willing to do that procedure has tailed off in the last five or 10 years. Is it similar in the States?

Whitaker: Not at all. We don’t have anything close to a John Read and his cohort doing research in the United States. All we can do is import what they’re finding, and so that’s what we do. John of course did a paper with Irving Kirsch. Now Irving is from the United States, but he doesn’t have the same platform in American medicine that John is gaining throughout the world. So, unfortunately, you don’t see in our press stories about harm from ECT. You don’t see in our mainstream press stories about loss of memory or cognitive deficits. This is the problem. There is this narrative in the United States that ECT is the most effective treatment there is. And if antidepressants don’t work, go have some ECT treatment.

Moore: The last couple of questions are related to the pharmaceutical industry. This is another question from DB who says, generally speaking, marketing targets younger people with the intent of creating lifelong customers. Does pharma take the same approach, do you believe?

Whitaker: It certainly did in the 1990s. What happened in the early 1990s was that the adult market for antidepressants was being saturated. There was a meeting at one point and the pharmaceutical companies said, what are untapped markets? How about the kids? We’re not yet prescribing them to kids.

One of the reasons for that lack of prescribing to kids was the understanding that ups and downs, and emotional upheaval were normal for kids and teens. They were filled with angst but it passed. Two, the understanding was that trials of antidepressants in kids hadn’t shown the drugs to be effective.

However, pharmaceutical companies, eyeing this market, began paying thought leaders in American psychiatry to say, “Oh, now we understand that depression is a real illness in kids.” Now they have to show that antidepressants are effective in kids. Yet, what they found, when they did their trials over and over again, was they weren’t effective and they increased the suicide risk.

At that point, what happened was a collusion between pharmaceutical companies and the thought leaders. They began spinning their data and hiding suicide risks. Eli Lilly managed to design a trial that minimized the placebo response in kids and thereby showed that Prozac was “effective.” In nearly all the other trials, the drug did not beat placebo even in the remission of symptoms.

So there was a targeting of youth to expand the market of antidepressants, and the pharmaceutical companies built that market in concert with thought leaders, and that is a story of harm done.

Then we got juvenile bipolar disorder. That also used to be seen as a disorder of a maturing personality, but then we had Joseph Biederman saying, “we’re finding this in kids as young as two, and you maybe need to medicate people as young as two.” The makers of the new atypical antipsychotics, specifically Risperidone, are helping to fund that idea.

The next thing you know, we have a disorder that wasn’t even seen as ever happening in kids becoming quite common in kids. If you get a diagnosis of juvenile bipolar, that’s a diagnosis that sets you on a path to be a permanent patient for life. A career as a mental patient. Again, if you can create young patients and turn them into lifelong patients, that’s a very profitable model.

The irony is that the companies that built this, their patents on their drugs ran out, so they’re no longer enjoying those profits because of the off-label drugs.

So, was this a story of pathologizing kids in order to serve market needs? Absolutely, and the very people that should have protected children from it, psychiatrists, failed to do so. It’s one of the greatest harms that has come from the disease model. Of course, ADHD is part of this as well.

Moore: On to the final question, again from DB about the pharmaceutical industry. How can we counter the misrepresentation of critical views as stigmatizing mental illness and pill shaming by the mental health industrial complex and its key opinion leaders?

Whitaker: It’s another great question. That goes to this idea of killing the messenger, that you’re doing harm by stigmatizing and shaming people.

First of all, you know what builds stigma? They’ve done studies and it is when you say the problem is inside the person’s head, because then other people say, oh they lack control over themselves. They can’t help themselves or they’re defective.

Which would you rather be told? That you have a defective brain and you’re going to be defective all your life, or that bad things happened to you? Which identity would you rather have? Which is less stigmatizing?

Also, if someone’s having trouble, which is more stigmatizing in society? It’s quite clear that when you promote the disease model, that is what adds to stigmatization. But it’s been so effective that now some kids want to adopt these identities on social media.

As far as pill shaming, at least within Mad in America and for most critical psychiatrists, it is about informed consent and it’s about letting the public know what we really know about these drugs and what we know about other possibilities. I don’t know anyone who’s saying shame on you for taking the drugs.

When you hear this blame being placed on critics of psychiatry, it just means they are trying to kill the messenger. If they had evidence that outcomes were improving and people were flourishing much more with medications, that’s what they would point to, but they can’t point to such evidence.

So when I hear that criticism about pill shaming and doing harm, I say to myself, these people have to kill the messenger because they can’t provide an evidence-based argument.

Moore: Perfectly summed up. Thank you to everyone who took the time to send in some fantastic questions and thank you Bob for taking time to respond to them. It’s been fascinating to hear you talk about these things.

Whitaker: My pleasure. And I think this is important to invite questions and help it be known what we do at Mad in America, what our purpose is, what our processes are, what impact we think we have and what answers we have to these attacks. I think sometimes we don’t do a good enough job of informing our readership about what our philosophy is and what’s behind what we do. So, thank you for thinking of this and organizing it, and we did get through a lot of questions.

The post Robert Whitaker answers reader questions on pharma marketing and psychiatric drugs appeared first on Mad in the UK.

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

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

Listen to the audio of the interview here.

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

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Anders Sørensen is a Danish psychologist, who also has a doctorate in tapering off psychotropic drugs. As a student, he was primarily interested in psychotherapy and how to help people with emotional difficulties. But then he discovered drugs dampened the emotions in such a way that it got in the way of actually working with them. Already as a psychology student, Anders saw that psychiatric drugs stood in the way of helping people with mental difficulties. His interest in medicine led him to further studies. Anders now helps people taper off and shares important knowledge about the harmful and addictive drugs.

Listen to the podcast on Mad in Norway

The post Anders Sørensen: Tapering off psychoactive drugs, and what these drugs do to our brains appeared first on Mad in the UK.

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This week we are sharing the audio from a recently held online discussion on supporting a child, teen or young adult in crisis. The host is Mad in America’s Family Editor, Amy Biancolli, and with her are guest speakers Ciara Fanlo, a recovered troubled teen, Morna Murray, a parent who supports her son through crisis, and Sami Timimi, a child and adolescent psychiatrist. It’s an honest and thought-provoking discussion and vital listening for anyone with an interest in parenting or the challenges facing our young people.

Listen to the podcast on Mad in America here

The post Family Panel Discussion – Supporting a child, teen, or young person in crisis appeared first on Mad in the UK.

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This interview is a conversation between Luis Gerardo Arroyo Lynn and Justin Karter.

Luis conducted this conversation in his role as an editor of Mad in Mexico. Established in September 2021, Mad in Mexico is not just an extension but an essential limb of the international initiative of Mad In America. Its mission resonates with the core values of challenging conventional thinking around mental health, focusing on the Spanish-speaking communities of South and Central America as well as the United States.

Luis graduated from Universidad La Salle and is now pursuing a master’s degree in Social Psychology of Groups and Institutions at UAM Xochimilco. He is currently conducting research on “Depsychiatrization of Mental Health,” with an interest in the fields of critical psychology, anti-psychiatry, and anti-speciesism.

Luis is in conversation today with Mad in America’s own Justin M. Karter, whose multidisciplinary work stands at the intersection of psychology, philosophy, mad studies, and global mental health. As a counselling psychologist, an Instructor for the Center for Psychological Humanities & Ethics at Boston College, and the lead research news editor at Mad in America since 2015, Justin’s approach to mental health goes beyond clinical practice.

In the spotlight is Justin’s research titled “Inclusion Toward Transformation: Psychosocial Disability Advocacy and Global Mental Health.” This study, completed in August 2021, addresses pressing concerns in modern mental health discourse. It critiques the prevailing Western notions that shape the Movement for Global Mental Health (MGMH) and champions a rights-based perspective, considering cultural, political, and economic conditions.

This interview explores the crux of Justin’s research, examining the transformative potential of an integrated psychosocial disability framework. By interrogating and deconstructing mainstream discourses, this conversation promises to shed light on how we can better serve those with lived experiences of mental distress, transcending traditional boundaries and embracing a more rights-based, inclusive approach. This conversation aims to redefine the way we approach mental health, madness, psychiatry, and psychological suffering, in a world that desperately needs a compassionate, critical perspective.

Listen to the podcast at Mad in America

The post Can psychosocial disability transform mental health? A conversation with Luis Arroyo and Justin Karter appeared first on Mad in the UK.

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

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

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

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

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

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

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

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

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

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

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

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

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

Frank: Thank you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The post Tanya Frank on ‘Zig-Zag Boy: Madness, Motherhood and Letting Go: My Family’s Struggles with Broken Mental Healthcare’ appeared first on Mad in the UK.

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The post John Read and Irving Kirsch – Electroconvulsive Therapy (ECT) Does the Evidence From Clinical Trials Justify its Continued Use? appeared first on Mad in the UK.

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The post John Read – UK Esketamine Approval – Not so Fast appeared first on Mad in the UK.

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On October 10th, 2018, World Mental Health Day, The Lancet Commission on Global Mental Health and Sustainable Development published a report outlining a proposal to “scale up” mental health care globally. In this podcast series, we discuss the implications.

The post Global Mental Health: An Old System Wearing New Clothes appeared first on Mad in the UK.