Rethinking Schizophrenia Why Modern Treatments May Be Failing – And What We Can Do To Fix Them
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Hello, this is Richard Jacobs with the Finding Genius podcast, now part of the Finding Genius Foundation. My guest today is Robert Whitaker. He's an author. He recently wrote a book called Mad in a

in America. So we're going to talk about his book, his background, and all that good stuff. So welcome, Robert. Thanks for coming. Thanks for having me here. It's a pleasure. Yeah. Tell me a bit about your background and what led to you writing this book. Yeah, I've actually written three books now about the history of psychiatry. Maddening America was the first, and then I wrote something called Anatomy of an Epidemic and a third book called Psychiatry Under the Influence. I have a long history of working as a covering medicine and science, mostly for newspapers in the 1980s and 1990s.

And then what happened in 1998, I did a series on abuses of patients in psychiatric research settings for the Boston Globe. While I was doing that study, I came upon some, and my understanding at that time is we were making great progress in understanding the biology of schizophrenia. We had these new drugs called atypical antipsychotics that fix chemical imbalances in the brain. And so it was a story of progress. Anyway, while doing that,

During that series for the Boston Globe, I came upon a couple of studies that belied that story of progress. One was studies by the Harvard researchers, which found that outcomes, long-term outcomes for schizophrenia patients, rather than improving in modern times, were actually worsening and were now no better than they had been in the first third of the 20th century, which was a

this story of progress that we believe in as our society. And then even more compelling for me, wanting to investigate this whole narrative and really what was happening with people diagnosed with schizophrenia and other serious mental disorders, was two studies done by the World Health Organization in which they compared outcomes for people diagnosed with schizophrenia in three developing countries, India, Colombia, and Nigeria, with longer-term outcomes in

in six developed countries, U.S. and five other Western countries. And what they found each time, one study was two years in length and one was five years in length, is the outcomes were much, much better in the developing countries. So much so that the World Health Organization investigators concluded that living in a developed country

is a strong predictor you won't have a good outcome if you're diagnosed with schizophrenia. I wondered why would that be since our medicine, we're very proud of our medicine in the Western world. And then after that first study, they were rather stunned by these results and they hypothesized, this is the World Health Organization's aggregator, hypothesized that maybe the reason for the better outcome in the developing countries is that the patients were more medication compliant. They took their antipsychotics regularly. So they measured antipsychotics

anti-psychotic usage in the second study. And what they found was that in the poor countries, the developing countries, outcomes were so much better. They used the drugs acutely, short period of time, but not chronically. And of course, the standard of care in the United States and other developed countries is to maintain people on these drugs indefinitely. So given that narrative in our society that we're understanding the biology, we have drugs that fix the pathology, the pathology said to be a dopamine, too much dopamine activity, and yet

outcomes were so much better in countries that didn't use those drugs, the drugs long-term. I said, there's something wrong here with this narrative. And so I got a contract to write a book, which became Mad in America, which really looked at, well, first of all, the treatment of the seriously mentally ill from colonial times until today, but also why are outcomes getting worse in the modern era? And is there something wrong with an earth? Is the narrative we're being told about schizophrenia, about mental disorders and about the drugs, is it really in sync

with the scientific literature, or is there a different story to be found in the scientific literature? And that led to the book Mad in America, which was really about the treatment of the, quote, seriously mentally ill. And then the second book I wrote, Anatomy of an Epidemic, just extends that to look at what are the long-term outcomes for people diagnosed with ADHD or bipolar depression. So those are the two books I really spent time in going through the research literature to find out what the science had to say about those questions.

So what do you think is the root cause of the issue of the mistreatment of people with schizophrenia and other psychiatric conditions? Well, the problem really is, I mean, there's the mistreatment of people who get diagnosed with schizophrenia or in old days called insane. That's a recurring theme.

throughout history. There was a brief time when something called moral therapy held sway, which they reconceptualized the insane as brethren rather than as people to be feared. But the mistreatment of the seriously mentally ill is a common theme in our history. But in the modern times, here's the problem. Antipsychotics were introduced in 1955, and they do seem to have some

benefit over the short term in quieting people, making them more able to be with others, that sort of thing. They actually, what they were called initially were called neuroleptics. They took hold of the nervous system. So you can see, and all of a sudden, that's the first thing that happens. Then they found that when they took people off those drugs, they tended to relapse real frequently. So they said, oh, you have to use these drugs long-term. And that's the story that guides our care even today.

However, if you follow the scientific literature, here's what you see about these drugs. Yeah, they may help stabilize people diagnosed with schizophrenia or psychotic disorders faster. But very early on, they noticed that, in fact, people were now relapsing, coming back to the hospital more frequently than before the drugs arrived. And before the drugs arrived in asylum medicine, say from 1945 to 55, something like 75% of

of first episode psychotic patients would be released within a year. And at the end of three and five years, 70 to 75% would be living independently in the community. So it's not true that antipsychotics, what is the arrival of antipsychotics is what made it possible for people so diagnosed to live outside the asylum. That was happening with great regularity in the decade before the drugs arrived. Anyway, to follow this forward,

You start seeing, saying, well, my patients are getting better faster, but boy, they're coming back more regularly than before. That's where we even heard the term revolving door syndrome was invented to describe this new clinical course. Then in the 1970s, there were three longer term studies done by the NIMH that compared unmedicated schizophrenia to medicated schizophrenia. And in each case, the group that was unmedicated

unmedicated, had better outcomes at one, two, and three years. And then in 1980, researchers at McGill University said, we think we know what's the problem. Oh, by the way, after those three NIMH studies, a very famous researcher named William Carpenter said this, we know that these drugs may work over the short term, but is it possible that they're actually increasing the biological vulnerability to psychosis? And this is why we're getting these high relapse rates and worsening outcome. And then in

In the early 1980s, some McGill University researchers put together the picture of what was happening, what the drugs were inducing a change that indeed made people more biologically vulnerable to psychosis. And now if you go forward, it's now 40 years from there, there's been a lot of research. And over and over again, you find that recovery rates for people initially diagnosed either with schizophrenia or psychotic disorder are higher than

For those who get off the drugs long-term, and just to complete this brief summary, we've had one really important NIMH-funded longitudinal study of schizophrenia and psychotic episodes published in the last 50 years. It was done by Martin Harrow and Thomas Jogue, and they began doing their study in the late 70s and early 1980s.

And they found that over the long term, starting with year five, and you see this at year 10 and year 15, those off medication, the recovery rate for those off medication is eight times higher than it is for those on medication. So roughly 40% of those off medication were in recovery at five years versus only 5% of those on drugs. And that was the same at the end of

10 years, 15 years. And the other part of this was they actually had three outcomes, in recovery, so-so, and really poor. There were very few who got off the drugs that ended up in the very poor category, whereas for those who stayed on the medications, about half ended up in the very poor category. And so what did the result... Well, why? What happened to them? Well, they would remain psychotic, anxious, cognitively impaired on the drugs, not working, whereas those...

who got off the drugs and stabilized off the drugs. They had very low relapse rates, better cognitive functioning. Many went back to work and to school. At one point, about 90% went back to work. So on every domain that was measured, anxiety, cognitive function, psychotic symptoms, relapse rates, employment, socialization, the off-medication group did better.

And they concluded in a presentation to the American Psychiatric Association in 2007 that we conclude, I'm talking speaking to the researchers, we conclude that patients, schizophrenia patients...

off psychiatric medication long-term have significantly better global outcomes. Now, unfortunately, this sort of result is never communicated to the public because it goes against the narrative that has been told to us by psychiatry and the pharmaceutical industry. So what is the ideal? So to use it when there's acute symptoms for a few months and then to stop it or wean off of it or only use it when acute events occur? What

What's the protocol? What does it appear to be? What's so great is we have an example of a community that adopted a selective use of antipsychotic protocol in the early 1990s. It was done in Northern Finland. It's called open dialogue therapy. And here's what they did. When people first came in, the first, you know, at the first psychotic break,

therefore their first interaction with the medical community, they would not use antipsychotics. They'd use intensive sort of psychotherapy and meetings with the person. And the idea was, can they stabilize with a lot of sort of community support in this way? And they, by the way, they would give them sleep medications if they were having trouble sleeping. Now, if someone, and then what they found is many, many people started getting better over time, which is actually fine. Not everyone, but many people got better over time. And over the long term,

they found that 67%, and they did this for 20 years of research, 67% of their first episode patients never needed to go on antipsychotics. They had a time of psychosis, but basically by the end of two and five years, they were back to work and school, that sort of thing. Now there was a second group, if you go in the initial time, that didn't get better. So with this group that didn't get better, about 35%, they were

They would say, will you be willing to take antipsychotics? It may help you stabilize, et cetera. And this group would get medicated, and actually in pretty low doses, however. Then after about six months, they would see who could come, of this group that had been placed on drugs, who could come off and who really needed the drugs long-term. So it was a selective use model, and they did this for more than 20 years. It's in a place called Tornio in western Lapland. And so here's how the spectrum of usage progressed.

played out. Two-thirds of their patients, newly psychotic patients, never needed to go on antipsychotic. About another 15% needed them for a time. And then about 20% needed them long-term for whatever reason. So that's like a best-use model. You figure out for whom and for how long.

It's not an anti-medication model. It's how do we use these medications to achieve the best spectrum of outcomes? And the thing that's so important here is this. What they discovered is that with the proper support after the first episode,

and with daily meetings often, meetings with the family and all, people could gradually get better and just have a time of psychosis rather than this sort of chronic long-term course. And that possibility shows up in studies of many, many types over many, many years. But we've forgotten about that here in the United States and other developed countries. So the protocol is medicate everybody right away and never try to get them out. I'm talking about people with psychotic disorders, especially with the diagnosis of schizophrenia. And what

It's clear in the research literature is that over time, long-term use of these drugs exacts a toll, including becoming more vulnerable to psychosis itself.

Before we continue, I've been personally funding the Finding Genius podcast for four and a half years now, which has led to 2,700 plus interviews of clinicians, researchers, scientists, CEOs, and other amazing people who are working to advance science and improve our lives and our world. Even though this podcast gets 100,000 plus downloads a month, we need your help to reach hundreds of thousands more worldwide. Please visit findinggeniuspodcast.com and click on support us.

We have three levels of membership from $10 to $49 a month, including perks such as the ability to see ahead in our interview calendar and ask questions of upcoming guests, transcripts of podcasts you're interested in, the ability to request specific topics or guests, and more. Visit FindingGeniusPodcast.com and click support us today. Now back to the show. Well, does that, do you think that's because of like drug-induced nutrient depletion or what do you think is the reason? Well, here's the reason they give, okay? Sure.

So what antipsychotics do is they block dopamine receptors in the brain, okay? Now, your brain, so in other words, by blocking it, they're diminishing transmission of dopaminergic messages along the different dopaminergic pathways. But the brain, being this extraordinarily plastic organism with all sorts of feedback loops, says to itself,

uh-oh, we have a problem. Our dopaminergic system is being blocked. So what we have to do to compensate, what they say maintain a homeostatic equilibrium, is increase the density of our dopamine receptors. And what that does is it puts the brain into what is called a physiologically dopamine supersensitive state. And what researchers reported beginning in the 1980s is, in fact, this is what

made people more biologically vulnerable to psychosis over the long term and also more vulnerable to relapse when they came off the drugs because they now had this dopamine super sensitivity. And Harrow and Jobe, when they were trying to explain their outcomes in 2007, referred to this. This is the mechanism, the immediate mechanism that the problem is. The drugs, because they block a normal functioning of a dopaminergic system by blocking receptors, cause the

the postsynaptic neurons to increase their density of the receptors for dopamine. And now the brain is in a physiologically dopamine super sensitive state. And that is at least the problem that was set forth, the mechanism for these poor long-term outcomes. And that goes back to the early 1980s.

But what happens if you have an overexpression of dopamine receptors? Do you get wild mood swings or what happens? Well, the thought is that with this increased density of dopamine receptors, you get a lot of problems. It can lead to tardive psychosis. That's sort of a chronic psychosis. It can lead to a tardive dyskinesia. And that dyskinesia is when you get

motor movement abnormalities like ticks, like your arms will be shooting off all the time or your eyes will be twitching or your feet will be, your toes will be wrinkling up. And the reason that is, what is happening is this. There are three main parts of your dopamine. In your brain, you have three main dopaminergic pathways. One serves the basal ganglia, which controls motor movement. And so over time,

that pathway becomes dysfunctional and you no longer have good control over your motor movements, your involuntary motor movements. And that results in something called tardive dyskinesia. A second part of your brain that is very dependent on dopamine is called the limbic system. This is where you mount emotional reactions to the world. Now,

initially, this is one reason that drugs work because you're muting your ability, your limbic system's ability to mount an emotional response. You become quieter, less agitated, that sort of thing. But over time, this limbic system now with dopamine receptors, it now can go into a sort of a hyper state. And that is seen as probably related to why you get this increased risk of psychosis. Now, the third part is in your frontal lobes. Your

The thought here is, again, that by blocking the normal functioning of the frontal lobes, this is why you get some, you know, initially, you get some cognitive impairment. And then over time, again, as these receptors get this dopaminergic super sensitive, you're basically getting frontal lobe dysfunction.

So over time, what you end up with is dysfunction in the limbic system, dysfunction in the frontal lobes, and dysfunction in the basal ganglia. And they show up in these different ways, these tardive problems. Maybe this, you know, from what I understand, there's a very high incidence of people that are taking antipsychotics that go off of them. Do these because they just feel horrible or they feel worse or, you know, all these things are starting to affect them and maybe at some clinical level, they just don't...

don't feel right and that's why they stop. Why? Didn't you interview Will Hall at some point, I think? I'm not sure about that. Well, Will Hall, he was someone who was medicated at one point. What you hear with great regularity is the drugs make them feel like zombies. They just don't care about the world. And sometimes because of the effect on motor movement, they can't read well. They just feel like they can't participate in life. They have sexual dysfunction and all. So when

When this often happens like right away, they just don't feel themselves. They don't feel like they can really experience life and they, you know, they want to like anybody else and they want to come off. They can also cause something called akathisia, which is this extraordinarily painful inner agitation where you can't, you can't be still. You pace all the time, you get up and down and

This adverse effect is associated with both suicide and violence. And by the way, if you go back to the 1970s, there was a congressional hearing where they brought patients to Congress to talk about what was it like to be on antipsychotics. They talked about how they felt it was a form of torture.

So, you know, if you were to go on an antipsychotic and try it out, you very likely wouldn't like the feeling either. Yeah, it makes sense. I mean, there's a, I guess also too, like there's also a disbelief about having schizophrenia too and some other conditions where it leads them to go off. So they don't feel well. They feel like zombies.

It's a part of them that thinks, I'm probably okay anyway. So I guess there's a big push to get off these medications for many reasons. Yeah. I mean, when we talk about schizophrenia, schizophrenia is a term used to describe different types of symptoms, okay? Whether it be maybe some people hear voices, some people are paranoid, some people are very lethargic and withdrawn. And

If you go into the research literature, people talk about the group of schizophrenia. There is no one schizophrenia. We don't know any pathology about it. And clearly, it's a catch-all term for symptoms of various types. And

Because of that, this sort of goes back to what was happening in Finland. They found a group that, for whatever reason, not that they ever identified the pathology, really did need these drugs. And actually, those who needed the drugs tended not to resist them. But others really do not like them. And one of the reasons they do not like them is because they see they're diminishing their lives. They still have that self-awareness. And

It's sometimes labeled that, oh, I don't know, I can never pronounce this right, agnosis. You lack insight into your illness is what they say. But the irony is, and that's those people who go off. That's what the psychiatric profession says. The reason they go off these drugs is they don't realize they're ill. Now, the irony is, though, it's those people who don't accept the diagnosis, actually, who are most likely to have a good outcome, to get off the drugs and have a good outcome. They don't see themselves in this light of being forever ill.

disabled or chronic or impaired or having a lifelong disease. So the irony is at an initial moment, people who resist that diagnosis are the very ones most likely to have a good long-term outcome if they can, and I hate to say this, but if they can escape the system that forces treatment on them. So what can someone do when they're on these medications? If they go to their doctor, the doctor's probably going to say, oh no, we need to stay on them forever. How

How do they advocate for themselves? What do they do? Well, this is the problem. It's very hard to get support for coming off these medications within the system. That's changing somewhat now. And the reason is, even at the very top of American psychiatry and beyond...

it is acknowledged now that there's no evidence that long-term use improves long-term outcomes. And so, for example, and then the British Journal of Psychiatry a while back had an editorial saying, you know, with all these new information about long-term outcomes, maybe these drugs just aren't worth the candle and their use should be reconsidered. So there is

a growing movement within research circles to support drug tapering after, say, six months or a year. However, in the real world, what people hear is, oh, no, you have to be on these drugs for life. And

What you'll find so often is the people who get off do so without support from their medical provider, whether it be a therapist or a psychiatrist. They have to leave the system to take this chance. Now, there are groups that have formed that will, peer groups, people who've had this diagnosis, which can provide support. There's hearing voices groups that meet and you can get

support for coming off medication within those peer groups. But getting such help from within mainstream psychiatric care, it's really difficult. And if anything, they may say, if you want to come off the drugs or start trying to come off the drugs, they'll forcibly, they'll get a court order and forcibly treat you, put you back in the hospital. Well, again, what are people supposed to do?

Is there an advocate they can get in the system or what do they do? You know, just to repeat like what they do, what they are doing so much is turning to other peers who have in fact got off the medication and trying to get support from them, sometimes from online or groups that meet in person. So for example, in the early 2000s, Will Hall started a group in Western Mass called the Freedom Center. And the Freedom Center,

located in Northampton. And Northampton was the home of a state hospital. So there were a lot of people coming out of that state hospital. And what this group did is they began supporting people. They would meet every week. I think it was every Thursday.

And people could come to that meet and talk about tapering down and what they were experiencing and get help if during when they were tapering down, they were entering a crisis period. And that group over a period of, I don't know how long it ran, five years, I think they had something like a hundred people successfully get off their psychiatric medications. And these are people who had been in the hospital. But

your question is a good one. Where do people turn? And I get emails every day saying from people saying my son, my daughter is doing terrible on these meds, wants to come off. Her psychiatrist won't help him. What do they, what do we do? And honestly, this is the problem. There isn't a lot of help for people who want to come off and to do it safely. Well, very good. Where can people find out more about your book and where can they get it as it out? And, uh,

You know, again, any other advice for what they can do? Maybe get these studies, give them to their healthcare practitioner and...

I run an organization, a nonprofit called Mad in America Foundation. And we have a website called madinamerica.com. And you can read personal stories there. You can read blogs there. And you can also read about the research I've been talking about. So you can go on and read a summary of the research regarding the long-term effects of antipsychotics. We have pages on research related to tapering from medications. So the first thing people can do is basically become informed about the research.

because unfortunately, this research should be known. And this research can provide a real note of optimism because it talks about people being successful in getting off these medications. And then secondly, there's a group called Inner Compass. It's someone who used to work for us, Laura Delano. She got off all her medications and she now runs online support groups for people trying to come off medications. So what they can do is

They can come to our website. They can become informed about this research. We provide links to all the studies we write about. We also have a daily science report. We also have a directory of providers who will help people come off medication, off antipsychotics. And then they can go to something like, there's something called Mind Freedom, which is an organization on the web, which helps people who want to come off medication. It's a

psychiatric survivors type organization. There's Inner Compass. So the biggest thing I would say is you can become informed about the research literature. You can become informed about some of the difficulties of coming off medication, some of the strategies for doing so. And with efforts, you can meet other people, at least online, that you can talk to and get some support from. Okay. Well, very good. Well, I appreciate you coming in again. Thanks for being here. Okay. Thanks, Ray. I appreciate the time.

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