By Marvin Ross
I keep reading comments from people wondering how anyone could possibly support Donald J Trump. Fact checking his statements demonstrates how wrong he is on much of what he says. And then there are the numerous comparisons of statements that he makes that contradict each other.
Not so surprising, sadly enough, when we look at the people who believe what Robert Whitaker and the anti-psychiatry movement believe.
Put simply, Whitaker and the Mad in America anti-psychiatry folks are adamant that anti-psychotic medication for schizophrenia makes people sick and shortens their lives. Research fails to support these contentions but they persist and the data is ignored. The two latest studies provide overwhelming evidence that anti-psychotics help – but more on that in a moment.
The late Dr William M. Glazer of Yale writing in Psychiatric Times four years ago had this to say of Whitaker:
Should we accept the analysis of a journalist who (1) to my knowledge, has not treated a patient or implemented a study and (2) reaches conclusions that run counter to well-established practice guidelines? Whitaker’s ideological viewpoint, which is implied throughout the book, is that our guidelines are inaccurate and driven by industry and our own need for income—that we are dishonest brokers. Beauty is in the eye of the beholder.
Criticisms of Whitaker have been done by many eminent psychiatrists but my favourite is by blogger Natasha Tracy in Healthyplace.com. Natasha explained why she refused to even read his book with these words:
Sure, he cites studies, he just contraindicates what the study actually proves. And nothing ticks me off more than this because people believe him just because there is a linked study – no one ever bothers to check that the study says whatever Whitaker says it does.
Except, of course, the people who do – the doctors. You know, the people who went to medical school for over a decade. You know, the people actually qualified to understand what all the fancy numbers mean. You know, those people.
And I, for one, rely a lot on what doctors make of medical data and they are the ones most able to refute Whitaker’s claims.
As for the contention by Whitaker and his minions that anti-psychotics make people sick, let’s look at two recent studies.
In 2013, the highly respected British Medical Journal, The Lancet, published a German meta-analysis on the efficacy and side effect profile of all anti-psychotics. The results are summarized simply in a blog by Dr Gerhard Gründer with a link to the original study.
The meta-analysis combined 212 studies with a total of 43,049 patients. All of the anti-psychotics produced improvements that were statistically better than placebo. The best agent was clozapine.
The most recent study was conducted in the Province of Quebec and published in July and was based on real world evaluations of all people prescribed with anti-psychotics for schizophrenia between January 1998 and December 2005. The cohort consisted of 18 869 patients. Outcome measures consisted of mental health event (suicide, hospitalization or emergency visit for mental disorders) and physical health event (death other than suicide, hospitalization or emergency visit for physical disorders).
The researchers pointed out that data from randomized control trials are often limited in terms of generalizability thus real world studies like this one are much more realistic. What they found was that taking anti-psychotics reduced the risk of having either a mental or a physical problem compared to those who discontinued taking them. The only anti-psychotic that performed poorly was quetiapine (seroquel) while clozapine had the best results.
The other criticism from the anti-psychiatry bunch is that taking anti-psychotics results in premature death for people with schizophrenia. Studies have shown that people with schizophrenia do die years earlier than others but the reasons are not well understood. One hypothesis that I mention in my book Schizophrenia Medicine’s Mystery Society’s Shame is discrimination by health care practitioners. Studies show that people with schizophrenia often do not get adequate basic medical care and treatment.
Researchers in Sweden conducted a real world analysis of 21,492 patients with schizophrenia. Subjects were followed up from 2006 through 2010. Data on drug use and outcomes was obtained from national registers.
What was found was that Antipsychotics and antidepressants were associated with a significant reduction in mortality compared with no use. The opposite of what the anti-psychiatry crowd claim. However, there was a clear dose-response curve for benzodiazepine exposure and mortality. More benzos, greater mortality. Note that benzodiazepine drugs are not anti-psychotic medications. They provide short term relief from anxiety, but they are addictive when used over a long period. Which means with long term use people develop tolerance and then crave more. And if they stop them they experience serious withdrawal symptoms. They are never prescribed alone to treat psychosis.
Psychotropic medications prescribed properly to those who need it, are beneficial despite what you may hear from some journalists and a vocal minority.
Mind You Reflections on mental illness, mental health and life 
Reblogged this on word from the trenches and commented:
As if a serious mental illness weren’t bad enough, people suffering from such conditions have to wade through a barrage of anti-psychiatry mumbo jumbo on asocial media – from Facebook and twitter, to respected newspapers. Mr. Ross unpacks the information in a few hundred words. My takeaway? Psychiatrists and neuro researchers–those people who have spent decades in school and working with the ski population – actually know more about how to treat the illnesses than the average, internet-informed obsessive who, like the birthers or climate change deniers, simply “knows” things.
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Trump barks, Whitaker writes well.
If I hadn’t been involved with the SMI for so many years, I would very easily fall for his elegant prose.His affiliation or nearness to places like Yale or Harvard , his position as a jwell known journalist would have enticed me.
His website would have also impressed me , and i would have fallen for the sublimal advertising when he claims that he subsists only on donations. !( i.e. if you like what I write ,pass me the money).
I first heard about mental health form CMHA, ,it took me a year or two to wake up….
I probably would have grown tired of Whitaker.too if I had read him for a while !
P.S. Bob Rae speaks well and Michael Ignatieff writes well !!!!!!
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Thank you, Marvin, for keeping us informed about the latest research. I hadn’t heard about this huge Quebec study. The power and influence of the psychiatric survivor/alternative mental health movement is enormous and its impact on people who actually have severe psychotic disorders is devastating. Increasingly in the US these people have become service deliverers and there is pressure for this to happen in Canada.
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Thank you Marvin, for an excellent piece! I have found that Robert Whitaker and his followers are extremely fervent in their beliefs and will not be dissuaded. Much like delusions. It is my sense that Whitaker tends to conflate two different ideas, thus benzos (which can be harmful in my opinion) become mixed in with anti psychotics which are life-saving, and he then brands the whole lot as very bad. And others of his followers, eg Epperson, conflate adults and children and brand their treatment with all meds as bad for both.
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But, I take it that you’ve never consumed psychiatric narcotics *AT ALL*. Mad people whose bodies HAVE been turned walking into toxic-waste dumps DO know more about these narcotics than you do. WE aren’t delusional for refusing to consume that poison. Nobody knows more about it than the people who carry around within it in their flesh and bone, all day, every day. YOU are delusional, twice over. First, for your schizophrenogenic-level grandiosity of believing that you know more about psychiatry than those people who bear the highest price for this quackery. And second, for your forensic-level grandiosity of believing that you have the right to turn another person’s body into your own property. Let’s give this batty tyrant a round of applause, folks. So far, she’s written THE sickest and most foul comment on this blog post.
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Here you go again 665. Try saying this about injectable insulin another life saver.
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Patricia Forsdyke, so-called “untreated, serious mental illness” WILL NOT shut down your heart, kidneys, etc. It won’t result in amputations, blindness, or comas. Totally irrelevant “example”!
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My experience is that psychiatry lacks the logical rigour needed for dealing with something as complex as the brain, and misses subtleties which only arise when the precise nature of how things are interconnected matters (as sometimes happens in the brain, but rarely elsewhere). The delusion that medically trained mental health people live under is that their training is sufficient to deal with something as complex as the brain safely and reliably, and that there is sufficient rigour in the methods psychiatric research uses.
My view as a pure mathematician and mathematical logician (whose career post-PhD was effectively derailed by the combination of my mental illness and the treatment decisions forced upon me) is that current psychiatric research is simply too low quality to be reliable in the context of mental health, and short of a complete ground-up rethink, cannot be made reliable.
When facing problems which significantly involve the behaviour of the brain (in a way in which the complexity of the brain’s processes cannot be ignored) it is important to be extremely careful in working out which rules of thinking work, and why they work. Small errors can sow the seeds for catastrophic errors later; similar outward appearances can have many different causes, different outer appearances can have similar causes, and in general the kind of simplifying assumptions that are fine when assessing painkillers or chemotherapy drugs are suddenly far from fine when dealing with how the brain relates nervous input to nervous output.
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So, so true, Mr. Allsup. Way too much of what changes the brain is not observable to ANY psychiatrist, even if they’re trying to look for those changes (And most of them aren’t.).They can’t use any medical instruments to see where your father played favorites between you and your siblings or where your mother said that spending time with you is “torture”. They can’t use those instruments to see your eviction, student loan debt, or workplace bullying. And, yet, ALL of those things cause the “mental illnesses” that people attribute to the “busted” biology of so-called “mentally ill” individuals. The power to define what is “healthy” and what is “unhealthy” is held by the mob, as so many forms of power are. They bank on doctors’ and scientists’ inability to use the latest techno-toys to detect their patients’ and study subjects’ histories of abuse and neglect. As soon as they’re able to do that, psychiatry, as we know (and hate) it, WILL GO EXTINCT.
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Though you raise some interesting points I wonder what you would suggest. As you know mathematicians have often approached medicine with little knowledge of biology and likewise there is a dearth of knowledge of stats by some biologists . the brains still a conundrum, but we know quite a bit more than we did. More science and not less is surely part of the answer.
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Antipsychotics may be life saving but at what cost. Many of the newer neuroleptics can raise blood sugar dramatically. IOW Their use can lead to Diabetes type2. Diabetes is the 3rd leading cause of fatalities. How can you claim there is no danger in taking these drugs? Is it fair to treat one disorder and produce a different, quite serious one?
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It seems to me that so many of the anti-psychiatry people will not accept that there is a physical problem underlying diseases like Schizophrenia and Major Depressive Disorders etc Medical treatment is essential. The anti- psychiatry devotees are truly in the dark ages. They cannot accept that there is a physiological problem. Alas if they were to suggest that Type One Diabetes could be treated without a pharmaceutical they would be guilty of spreading false info and be liable. But alas they can spread false hoods about the nature of serious mental illness and they get away with it. Sadly there are lot of Luddites out there.
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It seems to me that many of the pro-psychiatry people will not accept that, even if there is a physical problem underlying diseases like schizophrenia, the underlying physical problem may only be _part_ of the issue, it may be possible to work around that physical problem, their understanding of the mechanisms of how the physical problem lead to the psychiatric illness observed is woefully inadequate.
What the medical profession presents as an effective means to diagnose and treat is massively simpler than the complexity of the brain it claims to treat. That something so simple is correct and effective is extraordinary, and as people in scientific circles repeat ad nauseam, extraordinary claims require extraordinary justification.
Much of the logic in psychiatric research implicitly assumes its correctness, and then points to conclusions predicated on that assumed correctness as justification. As any maths student is taught, this is circular reasoning, and is fallacious. The problem is that if this assumption is false, then the conclusion assuming it is no longer supported, and thus potentially false, and so cannot be relied upon as a basis for justification.
That psychiatrists are unaware of logical subtleties as this, and how important they can be when dealing with disorders of the part of the body involved in thinking and decision making, leads to my having essentially no confidence in what I hear from them.
I would love someone to walk me through, in detail, how e.g. Risperidone actually works. From what I know, it blocks dopamine receptors in the brain, and essentially does so at random (or at least, is not guided by any intelligent or systematic process). From what I also know, if you take anything which works remotely like a neural net (that is, a bunch of nodes which send signals to each other), then randomly inhibiting signals can render said neural net incapable of doing what it was trained to do. My experience of having taken anti-psychotics was that large parts of my thinking faculties that had been reliable beforehand and are reliable again after discontinuing, were effectively rendered erratic or disabled. The ‘neural net’ picture arose from considering what I could work out from my perspective, thinking it out mathematically, and then relating it to appropriate areas of literature.
In any case, I would love someone to actually explain how schizophrenia, psychosis or mania actually work, and how treating them with anti-psychotics actually works, in terms of underlying mechanisms solidly supported by empirical evidence. Absent that, appearances can be _very_ misleading, and it is quite possible for an entire research community to go careering down a blind alley when the thing studied is as complex as the brain (and mental health problems, naturally, are at least as complex as the brain).
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(Shudders) Ugh, Risperidone. I remember that shit. That drug was Armageddon in a bottle. Literally, EVERY part of my body that could fall apart *did* fall apart on that poison. And it was addictive as hell. It took MUCH longer for me to quit that drug than it took for me to quit any of my others. Good on you, Mr. Allsup, for tossing that toxic waste.
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And I wonder how many of the anti-psychiatry devotees are parents of children or adult children who have a serious mental illness??? I know what I know about my dear, beloved son. And I am heartbroken because he has schizophrenia. I wish it was not so, but it is. And I would never want him to be unmedicated. Would their tune change then?
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A few questions to all of you bio-torture junkies: If a “study” proved that a prescription drug was safe, beneficial, and “essential” for you, would you *still* continue to consume that drug if YOU PERSONALLY had suffered MASSIVE and IRREVERSIBLE damage from it? Would you gamble on your quacks EVERY MOMENT OF EVERY SINGLE DAY, knowing full well that they’d *never* risk one cent of their money or one second of their time for you? I realize that these questions are rhetorical. We all know that your answers to both of them are FUUUUCK NO!!! Robert Whitaker is doing what all talented, courageous, and reputable reporters do – he forces EVERYBODY to answer life’s inconvenient questions as if the answers to those questions were relevant TO THEM, RIGHT NOW. That man’s work has saved my life. Mr. Ross, as a journalist (though not nearly as great a journalist as Mr. Whitaker), you have an obligation to retract this article, if you hold even a theoretical level of respect or curiosity for life’s sanctity. Mr. Whitaker’s work *matters* because the lives of the people he’s saving ALL MATTER. And some of the rest of you have, *literally*, squandered all your time for salvaging or recouping your own credibility on the so-called “anti-psychiatry” issue. You beastly frauds CAN’T access ANY legitimate mental health forums because you’ve all either killed, tortured, or incapacitated your Mad relatives via your state’s or province’s pro-forced psychiatry laws. The ONLY people who DESERVE to criticize Mr. Whitaker – and who actually come *close* to doing that – are Mad people like “Natasha Tracy” (a Mad woman writing under that pseudonym) who LIVE BY psychiatry’s medical model, rather than merely “studying” it. But even *they* don’t insist that ALL Mad people live as they do, nor do they EVER try to *force* any other Mad people into adopting their preferred lifestyles. I hope one of Mad in America’s gifted writers – perhaps even Robert Whitaker himself – finds this article and vivisects it AND Mr. Ross with their solid research, refreshing honesty, and endearing pro-Mad empathy.
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Yesterday I admitted that if I had not been ensconced in the mental health system for so many years I would probably have bought into the Mad in America movement.
Your comments dear site 665 have set me straight..
I AM OUT
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Hi Site665,
I appreciate your idea that those with mental illness are most qualified to comment on Whitaker’s work. However, I’d have to disagree. While, yes, I do think those with mental illness should comment on his work, others – like doctors and people like Mr. Ross – who study the data extensively also should comment on his work.
In my case, I don’t have time to argue with his ideas, specifically, and point out every error he makes. I have my own issues to talk about and my life isn’t devoted to anti-antipsychiatry. So I’m glad others pick up that torch and run with it.People should hold Whitaker’s feet to the fire. He is not always right, by a long shot, and others should say so.
Natasha Tracy
Mental Health Writer and Speaker
http://natashatracy.com
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Natasha, everybody’s sometimes wrong about everything. But, Whitaker won’t sick the cops on me if I don’t agree with him and, perhaps, even lay down my life in order to obey him. Neither will you. Anybody can say what they like and be wrong about anything they can’t OR WON’T understand. As long as those people are only hurting themselves, I couldn’t care less about shutting them up. The problem is that the pro-force psychiatry crowd wants to make Mad people do things that SHOULDN’T and DON’T WANT to do. NOBODY should be “neutral” about that evil.
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indeed, you stick to your own issues Natasha. You have no need to look at anything Whittiker or anyone else who criticises psychiatry has to write or practice.
Therefore no need to read your criticisms as they do not look at the evidence.
Not a lot of point in reading you on this subject then.
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Natasha,I believe your opinion carries so much weight because of your real life experience. That is why I beg you to research more this idea you put forward that doctors (because they have 10 years or whatever of school), ‘research the data’ extensively. Most doctors have little time to do more than ‘read abstracts’ and there is a wealth of information now about how badly research has been manipulated in the area of psychiatry. Many very thoughtful psychiatrists have felt very betrayed by how misleading research in this area has been. (try 1boringoldman as a reference – he is a psychiatrist who often argues with points made by Whitaker but he doesnt make questionable assertions such as ‘only medical practioners can understand studies’, or that it is somehow ‘good’ for people who have mental illness to remain uninformed and NOT read different opinions. He and his very prominent psychiatrist cronies delve deeply into scientific studies and show that there is a lot of what psychiatry is based on today which is NOT ‘evidence based’.
I find it so discouraging and frightening to see how often family members and patients (who are not ‘so called anti- psychiatry’ ) align themselves so closely to what psychiatry says – rather than taking a more balanced and independent look at the issues.
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Hi Sally,
I will put your request in the queue 🙂 And I do hate to not be responsive, but I am trying to get a book out right now so I don’t have a lot of time for heavily-researched pieces. It’s a great idea, though.
– Natasha Tracy
– http://natashatracy.com
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Natasha,you are so good at expressing what many of us want to say. Thank you .
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It is critically important not to get into the ‘either or’ mindset: do we listen to the doctors, or their ‘mad’ patients.
As is thankfully getting recognised more now, there is much about mental illness that, without lived experience, is difficult, if not impossible, to get one’s head around. On the other hand, most people, even those with serious mental health issues themselves, do not have the same exposure to people with these problems as frontline mental health professionals.
Moreover, all sides of these debates need to be aware of the limitations of their own viewpoints, at least as much as the limitations of the viewpoints of those who differ from them.
It is also worth listening to people who are both (those with medical mental health background who have also suffered psychosis, for example).
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I developed mania and psychosis in the final year of my Ph.D. in the foundations of mathematics. I have always been pedantic about logical correctness, in everything that I think, and much later was diagnosed as having an autistic spectrum condition. My biggest problem with reading stuff like this article is that the degree of rigour in too much of the current literature is just not good enough.
In civil engineering terms, it doesn’t matter how structurally sound the top ten floors of your office block are, if the ground floor just ain’t there.
People talk of ‘schizophrenia’ as if it is a single well-defined illness, when all there really is is a similarity of symptoms. When it comes to ‘treating schizophrenia with X’, it is treated as a black box where it is assumed implicitly that you can safely ignore everything other than the symptom picture which attracts the diagnosis ‘schizophrenia’. If this is not the case, and there is no sufficiently sound empirical basis to convince me that this is the case, then essentially EVERY study which implicitly assumes that details of the patient other than the psychiatric symptoms and diagnostic label can be safely ignored is fundamentally flawed. Every one.
Just as the second floor of an office block inherits structural problems present in the first, and the whole building inherits structural problems from the foundations, so all mental health research built upon flawed research is itself, necessarily flawed.
In addition, when assessing outcomes, the quality of life of the patient is effectively ignored. I would rather have ten good years then thirty bad ones, and ten years being able think properly and communicate than thirty years of having my brain perpetually malfunctioning, even if that thirty years comes with fewer psychiatric symptoms. The quality of life I endured on anti-psychotics was hellish, and the effects on my thinking, which is heavily dependent on using higher intellect to work around problems which led to my being diagnosed with an autistic spectrum condition, meant that I wasn’t even capable of properly communicating the problems I was having on them. From the outside, it can look like I was just a little dull, and perhaps better from a mental health point of view. From the inside, however, it was a perpetual hell that nobody else could see, and which I couldn’t even coherently explain, save for trying to say that the drugs were causing problems. Without the part of my brain the drugs affected being able to function as it could before anti-psychotics were used, I lacked the cognitive facilities to work out how to express what I was experiencing, and on the autistic spectrum I am (which was diagnosed years after my original hospital admission), I lacked the natural emotional and social skills to communicate another way. The one bit of my brain that I really needed to work reliably in order to get my life back together was the bit that the drugs targeted.
Having a passion for maths, logic, physics and computer science, and an insistence on the degree of rigour we find in those disciplines, I am gradually trying to find ways to explain in details that others can understand what goes on in a mind like mine when put on medication, and why the kind of studies talked of in the article are so misleading.
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Thank you for your comments. The one thing that I noted was your assumption that the effect that the medication had on you happens to everyone who takes it. That, of course, is a fallacy. Many people are freed from their delusions with the medication and need it. Erin Hawkes is a neuroscientist and this is what she had to say http://news.nationalpost.com/full-comment/erin-l-hawkes-forced-medication-saved-my-life
Marvin
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Mr. Ross, I had the EXACT same experience on the psychiatric drugs that Mr. Allsup had. So do millions of other people. Don’t blow us off by always trotting out your ONE psychiatric medication “success story” (who, to me, sounds sad and scared, rather than “successful”).
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Thanks for linking to Erin’s article Marvin. I know Erin, and she is a delightful person who in my opinion is a happy young woman, and very intelligent on brain function which is her major area of study. Anti psychotic medications have saved many lives, including my loved one’s, I agree that the side effects of some meds can be awful, but the disease itself can be far worse. I know of many people living with SMI who are taking meds that they tolerate well, and they are doing very well in life.
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I’m curious where you get the “The one thing that I noted was your assumption that the effect that the medication had on you happens to everyone who takes it.”
The only point where I assume it has the same effect, which is something added in a much more recent post, is that:
1.) Risperidone is a dopamine antagonist. I quote from http://psychopharmacologyinstitute.com/antipsychotics/risperidone/mechanism-of-action-pharmacodynamics-risperidone/
“It has been observed that from a pharmacodynamic perspective, all antipsychotics share a common feature: they reduce dopaminergic neurotransmission.”
2.) It blocks some, but not all dopaminergic neurotransmission.
3.) Which it blocks, and which it does not, is largely random: the pattern of blocking is effectively independent of the high level cognitive significance of the blocked dopaminergic neurotransmission. So in some sense, it ‘injects noise’ into the brain, relative to the same brain with no Risperidone.
To this extent, I do assume that it has the same effect (though since point (1) should be beyond doubt and point (2) equally so, and for point (3) not to be the case, Risperidone molecules will need some kind of supernatural intelligence, I think it is a pretty fair assumption). All else may differ from person to person, and at no point do I assume otherwise. I am very wary of trying to infer broad generalities.
My experience serves more as an example that:
1) They can have this effect without it being obvious to those ‘on the outside’.
2) What is observed ‘on the outside’ can be easily misinterpreted.
As many of my comments try to point out, my problem is largely to do with the level of confidence proponents of the ‘medical model’ display, and the degree to which they implicitly assume sufficient uniformity of those with the same diagnostic label.
There is a big logical difference between assuming or inferring a ‘forall’ statement, and using an example to show a ‘there exists’ statement.
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John Allsup’s information is consistent with my own hypothesis about psychiatric drugs. I admit that this hypothesis lacks logical rigour: it is based mainly on an analogy. Nevertheless, it would explain how both the pro-psychiatry and anti-psychiatry advocates can be correct about different things. So here goes…
Suppose that you are a plumber who is called in to fix problems in a large building. In many places in the building, the water blasts out unpredictably at ten times the pressure that it should. At other places, it trickles out drop by drop. In other places, both things happen, and you never know when. The temperature is equally flakey, flipping from boiling hot to ice cold in seconds.
You figure out that the pipes in the system are laid out and connected in all sorts of wrong ways. The diameters aren’t right, the valves are in the wrong places, the branches and connections that should be there are not, and the ones that are there shouldn’t be. But unfortunately, the building was designed with solid concrete walls, and all the pipes are permanently and inaccessibly encased inside them. You can’t fix the piping problems, and can’t even see exactly what they are. What can you do?
Well, suppose you put in an additive that increases the viscosity of the water. This might well moderate the extreme pressure changes, and make many parts of the system work in a somewhat more tolerable way. Of course, some other parts of the system will probably work even worse. But at least you have reduced the most serious problems. Alternatively, an additive that reduced viscosity might be better, depending on what problems in the system are seen as the worst.
It appears to me that psychiatric drugs work like these imaginary additives to the water in that imaginary plumbing system. One way or another, they all slow down, or speed up, the action of one or more neurotransmitters. A great many mental illnesses probably result from problems in the “plumbing” of our neurons — a network that is many orders of magnitude more complex than the imaginary plumbing system. And some of the time, depending on just how and where the neural networks are misconnected, either gumming up or speeding up some neurotransmitters will (at a rather gross level) cause the misconnected network to behave more like a well connected network would. If this interpretation is more or less correct, it explains why some people benefit from psychiatric drugs.
There are, however, two fairly obvious problems. First, the neurotransmitters that are affected by the drugs do not operate only in the area of the brain where the misconnections are; they operate throughout the nervous system. So speeding them up or slowing them down is going to have impacts in a great many other parts of the overall system, and some of those impacts are likely to be damaging. These impacts are what we sometimes call “side effects”. In fact, there is nothing “side” about them: they are simply effects, just like the desired effects. They happen to be effects that we don’t want.
The second problem is that the misconnections are likely to vary a great deal from one person to another, and that a neurotransmitter intervention that improves the behaviour of one person’s misconnection network might do nothing for another, or might even be harmful. This would explain why a drug that helps one person might be useless for someone else who SEEMS similar from the outside. As John said, we don’t know nearly enough about how these networks are internally “wired” — both the normal ones and the misconnected ones.
This theory leads me to believe that anti-psychiatry advocates are probably quite right when they complain that the negative effects of psychiatric drugs are often so serious that they outweigh the benefits, and when they complain that some people are not helped by the drugs at all. I also have seen too many instances of over-prescribing — either too much of one drug, too long a course of one drug (like 12 years on Lorazepam) or too many potentially interacting and conflicting drugs.
The part that I don’t agree with is the claim made by some people that there is nothing at all wrong with “Mad” brains in the first place; that it is only a matter of societal prejudice. No, there IS something wrong in most cases. The fact that pharmacology has a very long way to go before it can help in a reliable way does NOT mean that everything is OK.
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To Steve Finlay,
Crime, abuse, neglect, and prejudice damage the WHOLE BODY. Bodies change in response to internal AND external factors. A woman who get mauled by the animal she’s married to may sustain “brain damage” before that beast climbs off of her, but that “brain damage” is a *BRAIN INJURY*, NOT A “BRAIN ILLNESS”. Schizophrenogenic families and psychiatry wreak the SAME kind of havoc on their “loved ones” and “patients”, respectively. Have you read “marilynann baker’s” (scroll up) newspaper articles where she talks about how she wishes her son were dead? Her son IS being brain injured, in part, because his mother IS abusing him. In fact, one of the common “prescriptions” for “treating” “mental illness” is HIPAA, the law which protects medical privacy. Despite the pro-force psychiatry goon’s insistence that HIPAA is a monstrosity of patient’s rights, it DOES have clinical value. That’s why the medical community never threw its FULL support behind that sanist “Helping Families in Mental Health Crisis Act”. Doctors would be walking the talk on the “medical model” of “mental illness”, were that model valid. If for no other reason, they’d be using that model because they PROFIT when they use the tools and ideologies that WORK. The fact docs gain NO financial advantage from “medical model” is a dead giveaway that it’s pseudoscience.
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Despite not being from the ‘anti-psychiatry bunch’, I have huge respect for Robert Whitaker’s work and for the man himself. I met him once and he is kind, courteous and has endless patience to answer the most-trivial of questions.
It is not a prerequisite for author’s of widely cited studies of ‘Evidence Based Medicine’ to be medical practitioners. The point you quoted about him not treating people is a moot point I think – an unnecessary muddying of the waters.
Robert Whitaker works closely with the world-leading scientists in this area, such as Peter Gøtzsche (co-founder of the Cochrane Collaboration) and David Healy (psychiatrist and psycho-pharmacologist). Furthermore, many people have said that reading Whitaker’s books have turned their lives around for the better, so are they to be discounted as ‘anti-psychiatry’ too?
According to Dr Healy, patients with schizophrenia are 10 times more likely to be dead at the end of the first year of treatment than they were 100 years ago. Peter Gøtzsche has stated that Zyprexa (olanzapine) alone, has killed approximately 200,000 people, worldwide.
As the true dangers of antipsychotics has yet to be clarified, the huge number of deaths deserve a thorough and objective investigation.
Leonie
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Thank you for your comments. I would like to see your references for the two statistics that you cited. The statistic attributed to Dr Healy does seem strange. 100 years ago would be about 1915 and the term the schizophrenias to refer to what today is called schizophrenia was only introduced in 1908. The field of medicine was quite primitive by our standards and psychiatry even more primitive. It was also the time of the war and so I doubt if there were decent statistics being kept or even consistent diagnoses or treatment. Most with schizophrenia would have been locked away in asylums or kept hidden by their families.
I don’t dispute that there are side effects from any drug (or vitamin or herb) but the number of 200,000 for olanzapine deaths does not sound reasonable. Regulatory agencies like the FDA and Health Canada are not oblivious to extreme side effects and deaths arising after a drug is approved for use. Drugs have been taken off the market when it came to light that they were more dangerous than first thought. In the case of clozapine, when it was discovered that they could cause the elimination of white blood cells, they were removed I believe and then only allowed to be prescribed if the patient had regular monthly or bi-monthly blood monitoring. The incidence of this happening is only 1% but the regulatory agencies are being super cautious.
Marvin
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Mr. Ross:
And you want to FORCE-DRUG Mad people with a potentially toxic substance that requires bi-monthly blood monitoring to detect the DEADLY and IATROGENIC illness it can cause them, an illness that probably can’t be reversed once they’ve gotten it. Mr. Ross, Mad people would sooner kill you than to let you do that to them. You should read the comments on Stephen B. Seager’s Facebook post about this blog. Mad people descended on that Facebook page like locusts, ripping this blog post AND Mr. Seager. Most of the people who left comments on that page are Mad and ALL of their comments condemned this blog post as unresearched, sanist, dangerous, and evil. My hopes for the abolition of forced pharmaceutical psychiatry have been replenished this week.
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Marvin,
I wonder if you would be willing to take a good long read through the ‘one boring old man’ site. If you did, I wonder if that would change your perspective about how limited he safe guards can be for many drugs ‘approved for use’.
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Sally – I do read him sometimes. And the criticisms of big pharma have merit but much of the research is done by neuroscientists and MDs who spend their time doing research. And practicing psychiatrists and other MDs are required to take continuing education courses to keep current or else they lose their licenses. Doctors have patients sitting in front of them in their offices or examining rooms and those patients are in considerable pain and distress. If they treat them with whatever treatment they’ve been told helps them to get better then they continue in that course. If a particular agent helps no one, then they do not use it. This earlier blog by Dr Dawson may help to explain https://dawsonross.wordpress.com/2015/04/06/why-ive-been-prescribing-psychiatric-medication-for-47-years/
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Dr, Ross,
I have (and do ) read Dr. Dawson’s articles, so I have already seen the one you have pointed out to me.
As you probably know, OBOM does not only speak about big pharma, he also explains how the role of KOL psychiatrists have influenced treatment directions while receiving monetary gain, about ghost writing, about data that is not transparent, and misleading data, about flaws in study designs (e.g. drugs can be approved after study of short term even if affects are different after a longer period of time), about very strong placebo affects (that I imagine can affect treating physicians as well as their patients), all sorts of issues that are deeper than, (although are often related to big Pharma).
It sounds like you are saying that it is only practicing physicians (and not also research physicians) who are the only ones who have important contributions to make. This seems to fly in the face of ‘evidence -based practice” (Perhaps this is not what you meant – I could not quite understand what you were trying to say when you said …most of the research is done by. neurologists and research MDs……) OBOM is also a physician who has worked for decades, but what he writes about that has been successful in his practice, often seems to be very different from what many patients experience in mainstream psychiatry.
There is one point you make that is very close to my heart – you say ” If a particular agent helps no one, then they do not use it.” I only wish that in my experience, this had been true. What about all those people who are considered to be “treatment resistant”? Many of them remain very ill AND on very powerful medications. How do we know given the current state of research that those patients are better off than they would if they were not on that medication?
This is why we need to be open minded and consider ALL the `strong’ research. We need to think seriously about the studies you have brought to our attention (and thank you – I did not know about the Quebec study), but also we need to think seriously about the research that Whitaker has compiled under “The case against antipsychotics” on his website, as this could contain important information for other seriously ill people. Many of the studies he cites are NIMH funded studies or considered to be very well done studies. You can also find all of the counter arguments (e.g. from Dr. Torrey) listed on his site, so people can really mull over and think about this complex issue.
I really think it is time for people to stop making arguments using inflammatory statements (e.g. by saying things like ‘people who see value in the arguments against long term anti-psychotic medication use, are like Trump supporters’), and rather focus on discussing back and forth the research.
When we comment in these forums, what I think that we should be realizing is that what has worked/ is working for ourselves, our loved ones,and/or our patients seems not be working for many others who continue to be severely ill, or who tell heart breaking stories about their experiences, often as an inpatient. The severely ill deserve our serious consideration of what all the research is saying even when it is something difficult to hear.
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Sally – we don’t really differ at all. All that you say about the role of big pharma is correct. I may not have been clear about practicing psychiatrists being the only ones who can make decisions. The research that goes into any new agent as I’m sure you know is long and arduous. Research scientists come up with a molecule that theory tells them might be useful and it goes from there involving all manner of researchers until it gets to the clinical trial stage. Sadly, because of the cost of getting a drug to market, most of that is done by big pharma who are for profit companies. Sorry if you know all this.
The doc in the office learns of new drugs from a salesperson but if it does not work for him/her and colleagues or has bad outcomes, they won’t use it.
The difficult part is that a drug will work for one person and not for another so there is often a great deal of trial and error. There are also some people with schizophrenia who are treatment resistant. And there are some doctors who should not be seeing patients. There is an old joke about what you call the person who came last in med school – Doctor.
I do think we are mostly on the same page.
Marvin and not Dr.
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Sally – I forgot to address one of your comments and that is about looking at Whitaker’s stuff. Whitaker does make a lot of good points about big pharma and prescribing and that many drugs are over prescribed. Unfortunately, he often looks at some parts of studies to the exclusion of others.
He cites the work of Martin Harrow in Chicago as demonstrating that people who don’t take anti-psychotic meds do better than those who remain on them. That isn’t surprising. If people are doing well, they may with their doctors taper down and then go off and remain well. The ones who are less ill might be able to do that. The others won’t. And so if you look at his published data, you will find that a large proportion of people in his cohort remained on drugs. He makes the comment that there is no way to tell if someone can go without drugs or not. Many can’t and that is the problem – not enough is known to predict.
The same applies to a study by Wunderink in the Netherlands. Some were able to go off and others could not and that researcher made the same comment that there is no way to tell. And that study was of first episode which differs from schizophrenia. If Whitaker reported those facts, I would not have a problem with him but he argues that the meds seem to be bad long term.
He also praised the Open Dialogue program in Finland which is unique and interesting but the assertion that it results in people not needing meds is not the fact. There has only been limited evaluations done on the program and many in the program still need drugs. There is a pilot project on this program taking place in Massachusetts and the preliminary data is based on only 14 people – some of whom are on drugs. In fact, the research protocol, if I remember correctly, excluded the sickest people.
This Huffington Post column of mine illustrates the problem although it was not something that Whitaker wrote but one of his respondents on MIA http://www.huffingtonpost.ca/marvin-ross/schizophrenia-treatment-medication_b_2217887.html
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Hi Marvin,
Sorry for the delay in getting back to you – just busy. I went looking for the references you wanted and have them now.
In Dr Healy’s ‘Madness of Psychiatry’ post (third paragraph down), he notes the vast increase of deaths of patients with schizophrenia: http://davidhealy.org/the-madness-of-psychiatry/
He also refers readers to the following study which explains the historical terms you mentioned:
‘Mortality in schizophrenia and related psychoses: data from two cohorts, 1875–1924 and 1994–2010. BMJ Open.’
Similarly. on P. 232 of ‘Deadly Medicines and Organised Crime’, Peter Gøtzsche estimated the number of deaths caused by Olanzapine to be 200,000 – although that quote was from 2013 so the numbers are now likely far higher.
While you acknowledge that all drugs have side-effects, you also mention vitamins and herbs in the same sentence. A little irrevelant surely, when compared with 200,000+ deaths from one psychotropic drug alone? A little informed consent would go a long way here.
Leonie
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Leonie I had not seen that Healy study before. The data I presented in my blog are current, involve large numbers of patients, and have different conclusions. Healy talks about suicide as the main cause of death and no one disagrees that suicide is a serious problem for people with schizophrenia. It is particularly so in the first year of treatment. In Healy’s data, there were 11 deaths for the people with schizophrenia out of 203 or 5.41%. In the historical group 58 deaths (excluding TB) out of 653 or 8.88%. Fewer in the current group. It was higher in the other psychoses group. I’m not clear how he determined that people in his historical group had schizophrenia as the term was coined in 1908 and his data go back to 1875-1924.
As for the 200,000 deaths to 2010 from olanzapine, you say he estimated that. I have no idea how he estimated it and, frankly, I am doubtful.
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Marvin ,
Thank you for entering into a back and forth discussion about the research. I have looked briefly at the article you suggested (the one you wrote) and I will read it more thoroughly to try and digest what you are saying there.
I have heard before the theory about the Harrow study that you bring up here in the comment section. (I have tried to post this comment underneath it ). My understanding was that this theory (the idea that the people who were doing better were the ones taken off medication), is not considered to be supported by the data of the study. I think this is because when two groups (the medicated group and the nonmedicated group) were compared after 2 years , both these groups had equally severe symptoms. It was only after the 4.5 year mark that the nonmedicated group showed superior results to the medicated group. (Harrow explains his study in detail in the continuing education section of MIA)
A better criticism of this study is that it was not a randomized study and that is why the Wunderink study was considered so important – a randomized study showing a similar trend. I am not going to go into more detail except to say that these studies are part of a much wider body of research, that have been discussed back and forth by people more informed than me (and as I have said before the arguments both for and against (links to articles of opposing opinion are provided) can be found in the section entitled “”The case against antipsychotics” ( on the MIA site.). A psychiatrist who has worked for decades with people with psychosis (schizophrenia in particular) –Dr. Sandra Steingard – explains a lot of the research in her various articles and also advocates for ‘slow psychiatry’ as a way to mitigate a lot of the pitfalls of treatment. Her articles are posted on the MIA site but people who read her will find that she is anything BUT ‘antipsychiatry’: she is an incredibly honest, brave psychiatrist who always speaks her own mind. Although I know there are some wonderful psychiatrists out there, (we have one!), the current state of ‘main stream’ psychiatry does not follow the principles of ‘slow psychiatry’ as outlined by Dr. Sandra Steingard.
Dr. Steingard, would, I think, agree whole heartedly with you Marvin that neither the Wunderink nor the Harrow study show us ‘who’ are the people who do well without medication, but I think she would also acknowledge that the studies also show us that we can’t tell ‘who’ are the people who do well WITH medication, and even more sobering, that it is important to consider whether the use of antipsychotic medication hinders the long term recovery of some people who fall under the dx of schizophrenia.
I believe the discussion of the use of antipsychotic medication is controlled by so much fear. There is the fear of patients or the families of people who are doing so well on medication. These people understandably do not want people who don’t understand all the history or particulars of their story to threaten the returned well- being of their loved one. Then there is the fear, of course of the survival and well being of a person when they are in a psychotic state. I understand this fear which is why I am a strong supporter of ‘forced safety’ (which is different than ‘forced medication”). However, what about the fear from the people and the families of people who are NOT thriving on medication and who fear that they are being forced to continue with a treatment that doesn’t work for them and which may (we just don’t know yet) be hindering their long term recovery? ( For me, it is the subset of people who REMAIN severely ill (in state hospitals etc) on powerful medications for years and years that I feel particularly worried about in light of the current conflicted state of the research. )
Do we discount the growing number of stories and opinions from these people and families and tell them they are as illogical as Trump supporters? Do we dismiss their concerns about the side effects of powerful psychiatric medication as you did by comparing them to the side effects of vitamins? Or do we really try to understand the fear and pain that lies behind what some refer to as ‘anti-psychiatry’ rants, and realize that there is still so much we don’t know about this area of illness. I believe you, as a reporter, could do so much good if you acknowledged and discussed, rather than dismissed these very complex issues. What I would love to see, is some sort of initiative that could tie together concerns about homelessness and safety, while at the same time providing options to people (and the families of people who can’t speak for themselves yet), that acknowledged that different treatments might be better for different people.
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Marvin,
You asked for references. I gave them and yet you are still sceptical – despite what the world-leading experts have said. It seems to me there is a huge disconnect between you saying on the one hand that psychotropic medications are beneficial – and then saying you are ‘doubtful’ of the estimated 200,000 deaths. Thus, at the very least, caution should be advised?
It also seems that Robert Whitaker’s research is backed up by many eminent (and independent) scientists, so I’m not sure what your issue is. Part of the problem with EBM can be seen in the Swedish research you cited. It lists the following conflicts of interest for the lead author, Dr. Tiihonen:
Dr. Tiihonen has served as a consultant to Lundbeck, Organon, Janssen-Cilag, Eli Lilly, AstraZeneca, F. Hoffman-La Roche and Bristol-Myers Squibb, and has received fees for giving expert opinions to Bristol-Myers Squibb and GlaxoSmithKline, in addition to lecture fees from Janssen-Cilag, Bristol Myers-Squibb, Eli Lilly, Pfizer, Lundbeck, GlaxoSmithKline and Astra Zeneca.
Now if I had the time I’d research exactly how many of these pharmaceutical companies manufacture psychotropic medication.
Leonie
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Sally I hope this is a reply to your last comment but wordpress is not logical as it does not let me reply to your last post but I have to find the post you replied to. Anyway, first let me say that I never said that vitamin side effects were equivalent to the side effects of antipsychotics. I just meant that everything has side effects. But, and this is a big but, not everyone gets the side effects or the same ones. Even within the same class of drugs, some give side effects and others don’t.
This is what makes prescribing so difficult. It is not unusual for someone to be tried on different agents until there is one that works and sometimes none work. And the problem with schizophrenia is that it is likely a number of different conditions all lumped under that term. When Bleuler first described the condition in 1908, he called it the schizophrenias.
So while some people will have a better prognosis, others will not and about 30% are treatment resistant. I was on a panel with a scientist from the Centre for Addiction and Mental Health in Toronto and they are working on trying to decipher the various forms and to determine what might work best. Dr Dawson did a family survey to try to tease out the commonalities in onset (results are posted here). He found a number of different paths leading to the one diagnosis.
And the present medications only treat one set of the symptoms of schizophrenia – the positive symptoms. There are other deficits that are not touched. Until science can advance, antipsychotics for most along with case management, rehabilitation, etc offer the best hope for most people. Erin’s story is an interesting one https://www.youtube.com/watch?v=ZLTd5lcSCZQ
I don’t know Dr Steingard but I found her lecture and will watch it. I suspect she is doing what any good doctor should do (and there are many bad ones). You determine a drug that might be best, start at a low dose and then titrate up until there is a dose that is beneficial. And then you monitor the patient for problems and react if there are any. It is slow but that is the way of proper medicine regardless of the condition. You also don’t just rely on meds but prescribe other modalities like case management, psychosocial education and so on.
Marvin
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Marvin
I know this is quite a delayed response but I had a couple of points regarding your last comment:
You write: ” Until science can advance, antipsychotics for most, along with case management, rehabilitation, etc offer the best hope for most people”. I thought the whole point of recent discussion about the research of the long term effects of antipsychotic medication, was to examine whether or not this wide spread assumption by psychiatry is actually evidence based. So to have you just restate that ‘assumption’ as ‘fact’ does make the discussion quite frustrating. Unless people are open to the questions that research is raising (and unless the studies examined are rigorous and honest ones) ‘science’ is not going to advance as quickly as it could.
Thank you for the link to Erin Hawkes’s speech –although I have seen the speech before, I found it useful to watch again -what an amazing person she is. She makes it very clear about her desire for forced treatment if she were to go into psychosis again, and I whole heartedly support her right to have that treatment. There are other people who have recovered from a dx of paranoid schizophrenia –Eleanor Longden comes to mind- who felt they were only able to do so WITHOUT the use of antipsychotic medication. I whole heartedly support Eleanor’s choice to not take antipsychotic medication despite the fact that she went through terrible relapses prior to recovering. Erin Hawkes speaks elsewhere about the cognitive deficits that prevented her from continuing her doctoral studies (If I remember correctly she said she didn’t know if the cognitive deficits were from her illness, from banging her head repeatedly or from the long term use of anti- psychotic medication). Eleanor Longden did not suffer lasting cognitive deficits and was able to finish her doctoral studies. I know it is not scientific to compare two people’s situations to make any general meaningful conclusions –- I only point out comparisons to Eleanor because while ‘main stream psychiatry’ uses anecdotal stories like Erin’s, that support the use of antipsychotic medication, to affirm its assumptions; it seems to dismiss experiences of people like Eleanor, who recover without antipsychotic medication.
Thanks for looking up Dr. Steingard’s work. You say “I suspect she is doing what any good doctor should do ……” but I think you will find ‘slow psychiatry’ is so much more than that. I believe Dr. Steingard has said that best practice involves ‘holding off from giving antipsychotic medication for as long as possible’, BEFORE starting with the lowest doses etc. This rarely happens in inpatient units for first episode psychosis – people are started on these very powerful brain changing medications within days if not hours of being admitted. Sadly I believe that can really cloud the picture for many people and set people on a much more serious course than may have happened with a slower approach. I think the best thing about Dr. Steingard is how humble and honest she is about what her profession can offer; and how open she is do thinking about contributions made from those outside the field of psychiatry. For example, she criticizes the ‘circular reasoning’ stance that is often taken by main stream psychiatry when people do recover without medication (e.g. they will says things like oh those people were wrongly diagnosed and didn’t have schizophrenia in the first place, etc.)
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Nice to hear from you again, Sally. Anitpsychotics are demonstrated to be effective based on clinical trials, meta-analyses, etc. But they only treat some of the symptoms of schizophrenia. When I said science needs to advance I was referring to the cause of schizophrenia. There are a lot of theories and a number of forms of schizophrenia not yet identified. As with almost all diseases, medication does not cure in the sense that the things that caused the condition in the first place are eliminated. The medication just deals with alleviating symptoms to some extent. I think the only medication that removes the cause of a problem are antibiotics for bacterial infection. There may be others but that is what comes to mind quickly. People get treatment for a lot of things like say Crohn’s Disease but the treatment only targets the symptoms and not the underlying cause.
Cognitive deficits I gather are one of the symptoms of schizophrenia that is getting more attention but I don’t know that much about it.
I have difficulty believing that any doc would be gung ho for first episode.This is the short guide to treatment http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/schizophrenia-guide.pdf
This is an outline of treating first episode.
Hope this helps
Marvin
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Leonie I think all of those companies make psychotropics and they compete with each other. On the Healy study, I showed you that there are less suicides in his current cohort than in his historical one for schizophrenia. And the other aspect of his study is that in the historical cohort, they were in a residential facility so they were being cared for, had proper meals and a bed to sleep in. The current cohort were only hospitalized for a brief period and we don’t know what conditions they were in after hospitalization.
As for for the 200,000 dead, saying that someone wrote that as an estimate without providing information on how he arrived at that figure is not citing proof. Did he include off label use for dementia which is not recommended and has a warning associated with it? I don’t know. This is a discussion on the merits of his assertion at http://skeptics.stackexchange.com/questions/19173/has-olanzapine-zyprexa-caused-200-000-deaths
An example of the efficacy of antipsychotics see this as an example https://www.youtube.com/watch?v=ZLTd5lcSCZQ
Marvin
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I thought a little more since writing my last comment here. I took the care to write it in Libreoffice first, and the copy and paste.
A View from a Pure Mathematician with Mental Health Problems
This is a sketch of an explanation for why I find clinical trial based evidence for the efficacy of antipsychotic medication unconvincing: conclusions contrary to the ones claimed are very plausible, and to me seem quite likely.
First some ad hoc jargon:
Path to recovery: a series of possibly overlapping stages involving learning, adapting, treatment, therapy and other activities.
Stage of recovery path: one of those stages in paticular
Let me explain:
In university education, and in many other areas of learning, there is the notion of pre-requisites. In civil engineering there is the lovely analogue that you cannot start building the second floor of a brick building until you have finished building the first.
Problem 1: If a path to recovery requires discrete stages, some being pre-requisites for others (forming a directed acyclic ‘dependency’ graph), and only individual discrete interventions are tested in a clinical trial (that is each stage is tested in isolation), then from the point of view of the trial outcomes, it will appear that all of them are ineffective: if getting to the end of a puzzle involves doing steps A, B and C, in that order, then after doing only either step A, or step B, or step C, we will not have solved the puzzle. Importantly, absence of evidence of efficacy of A, B, or C, tested independently as means to solve our puzzle, is not evidence that a complex combination of A, B and C, say ABC in that order, is ineffective.
Problem 2: If a learning stage takes time, say two years, and your clinical trial only looks at 6-month outcomes, again it will fail to notice any efficacy of the learning process that takes longer than 6-months to deliver results.
Problem 3: If every patient has many effective paths to recovery, but none of those paths is common to more than a small subset of the patients (this is where individual differences matter), a randomised controlled trial of such paths will with a high probability randomise patients to paths which do not work for them, and as such, appear to show that the assumed effective paths are ineffective. That is, the trial will likely not see evidence of efficacy despite it being there by hypothesis.
Result: All this skews typical studies heavily in favour of single interventions (whether a single drug or not) that provide consistent results relatively independent of the details of the patient it is tried upon aside from the diagnostic label. Essentially you are trying to decide the correct treatment before you have even met the patient. If alternatives which are specific to a small number of patients work much better than a drug, a randomised controlled trial that takes a cohort of patients whose only necessary common feature is a diagnosis of e.g. schizophrenia is unlikely to spot this. It is important to carefully and thoroughly detail and accurately quantify the nature of such systematic biases caused by averaging effects, selection effects, and the information lost in reducing things to labels.
Conclusion 1: It is important to understand what particular randomised will not see, and not to draw conclusions beyond the limitations imposed by what the RCT does and does not see. Failure to do this is akin to forgetting constants of integration when solving differential equations. People who understand the nature of lossy compression as used in MP4 video files and MP3 music files know that once non-redundant information is discarded in a lossy compression process, it cannot be reconstructed given only the output of said lossy compression process. In reducing clinical trial data as the published results, the degree of lossy compression applied is akin to reducing a 1080p video to a 64×64 thumbnail video at the minimum bitrate possible. You must understand that lossy processes are at work, how they distort things and, importantly, that you must always be aware that what you are seeing has been subject to such lossy processes, and is thus necessarily ‘distorted’ as a heavily compressed and downscaled Jpeg photograph is.
Conclusion 2: Claims of efficacy of medication such as the one pointed to above do not follow from the evidence except insofar as their results must be understood to show a picture of efficacy of interventions that is averaged across all patients with a common diagnosis. The results you see are not specific to any individual patient, nor necessarily particularly accurate: they represent the effect of treating a hypothetical ‘average patient’ obtained by picking out features which occur in the majority of patients and ignoring all else. Used wisely, such average outcomes are powerful and useful, but used carelessly they can and do mislead.
Analogue 1: Just as knowing the centre of mass and average momentum of a swarm of bees tells you little about what any individual bee is doing, so the results of typical RCTs fail to tell you about things specific to the individual patients taking part, and even more fail to tell you about things specific to individual patients who are not taking part. It is important never to presume that they do, or can tell you more than that ‘averaged over entire sample’ picture.
On Open Dialog: The talking led interventions of Open Dialog, for one thing, provide an early opportunity to consider possibilities specific to the patient at hand in a way that RCT based studies simply cannot do. The major difference is that more thinking about what to do is taken after meeting the patient, rather than before. This allows specific details to be included in the decision making process in a way which is naturally impossible for decision processes based mainly on RCTs can do.
Open Offer: If anybody reading this would like me to go away and attempt to add substantial mathematical rigour to the sketch above, I would be happy to do so. But it is important that I have an understanding of the levels of mathematical sophistication that will make sense to others here. In addition, I believe it is relatively straightforward to construct artificial computer models so as to illustrate the logic of the above.
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A second thought from a pure mathematician
If someone reads the reasoning in my last comment, they may well ask ‘why does that logic not work for all other clinical trials, which seem to work to a high degree of reliability?’
Here is my explanation as to why (caveat to the reader, there is a certain amount of mathematical sophistication in what I am talking about, especially if you want to check details).
On the Safety of using Averaging Processes
There is a danger in assuming it is always safe to filter out noise. Modern broadband over copper telephone wires is a case in point. That ‘broadband filter’ you place between your phone and the phone socket is actually two filters: one filter removes high frequency information (stuff that humans can’t hear, and could not be considered a meaningful part of any normal telephone conversation, and which the telephone network will, by default, remove anyway to aid transmitting the voice signal from source to destination). The other removes the low frequency information, leaving only the inaudible high-frequency signals. Thus we have what sound engineers will know as a crossover filter: it takes a signal in, and outputs two signals, one with only the high frequency information, and one with only the low. When you have a two-way passive speaker (typical in a hifi), there is such a crossover in the filter, sending the high frequency signal to the tweeter, and the low frequency signal to the woofer. I shall refer to these high frequency and low frequency components as ‘broadband internet’ and ‘voice’ by analogy.
Now, this low frequency signal can be distorted by audio effects such as reverb, distortion, equalisation, and so on, and be intelligible (music producers in studios play with this stuff all the time in making modern pop and electronic dance music). The high frequency signal, on the other hand, while carrying far more information, is also far more fragile. If more than a handful of bits are corrupted (that is, 0’s turned into 1’s, or vice versa, or the receiver simply not being able to determine whether a bit is a 0 or a 1) then the signal will contain errors. With computer data, it is quite possible that a single bit error can have catastrophic effects on the behaviour of a program, and it is quite usual for a single bit error to be able to prevent a program even running. On Linux, for example, a single bit error in the first 16 bits of a program written in any scripting language is sufficient to prevent it running.
Sometimes bit errors are tolerable, sometimes not. It is important to understand this distinction, since if a few bit errors can be easily tolerated, it is safe to assume close similarity is tantamount to identity (that is, being identical, and do read the quote from Emile Kraepelin quoted by Bentall on p14 of Madness Explained, where he explicitly assumes identical disease processes can be inferred from similar symptoms), but if a single bit error can cause a system to behave completely differently, as can easily happen in a machine or device capable of arithmetic (either a modern computer, or the human brain), then it is no longer safe.
Modern cryptographic hashes can be used for checking data integrity for precisely this purpose: if two inputs to a hash such as SHA256 differ in even a single bit, it is highly improbable that the output will be the same, and thus far nobody has been able to exhibit a single example of two distinct meaningful inputs which generate the same output. In general, once you have a system capable of arbitrary arithmetic, from a logical complexity point of view, all hell breaks loose. In particular, there are two celebrated breakthroughs from the early 20th century in the foundations of mathematics. The first, chronologically, was the undecidability theorems of Godel, the second was the two independent solutions to Hilber’s Entscheidungsproblem by Church and Turing, which laid much of the foundations for the breakthrough in technology we know of as modern computing.
In computer programming languages there is the notion of Turing Completeness, (or recursive completeness). If a Turing Complete programming language has sufficient computational resources (reliable storage and time), then it can solve exactly the same mathematical problems as any other Turing Complete programming language given sufficient computational resources. There are some languages, such as regular expressions, which are far simpler, and not Turing Complete. In addition, there is no known example of a computer programming language which, given unbounded resources, can solve mathematical problems that Turing Complete languages cannot, or at least not without access to some kind of ‘magic’ oracle. Basically, once you have unrestricted arithmetic, stuff like this is possible, and if you don’t have something capable of unrestricted arithmetic, they are not. (I did my Ph.D. in models of arithmetic at Birmingham under Richard Kaye, in case you’re wondering how I am familiar with this stuff, developed psychosis in my third year, and have been out of work since leaving university, essentially treating my Recovery as my postdoc research project. I did, however, complete my Ph.D.)
These simpler languages often have an important property of being far more easy to predict in their behaviour. Once you have Turing Completeness, however, there is no effective general decision procedure that can take a program’s source code, and the input it will be present with, and tell you whether it will finish processing the input or not. This is called the Halting Problem.
Godel’s discovery had seismic implications for the foundations of mathematics. What Godel proved is that any sufficiently rich system of arithmetic (for example one which can do arbitrary addition, multiplication and comparison) contains statements which are true within that system, but cannot be proved true within it (roughly speaking: do read up on Godel’s incompleteness for more precise details if interested). Importantly, given an arithmetic capable of only addition (that is, you can talk of adding a number to itself a fixed number of times, so given n you can work out 7n, but given m and n, you can’t repeatedly add n to itself to get mn), such as Presberger arithmetic, the situation is completely different: it is decidable. Again, the interested reader is invited to look this up. In short, there is (roughly) a degree of complexity when total predictability essentially collapses. The brain is above that degree, and the rest of the body below it, or at least can almost always be safely assumed to be below it.
It is differences like this which are why the problems with averaging that I described last time are very significant in areas relating to brain and behaviour in ways which they simply aren’t in other areas. When we can safely ignore issues such as the above, randomised controlled trials have a good change of giving good results. When we cannot, however, what randomised controlled trials can tell us is a far less complete picture.
Intuitively, given the totality of information present in the patients in a trial, the statistical methods used to draw conclusions give us the ‘voice’ part of the signal from our ‘copper telephone line’ but not the ‘broadband internet’ part.
In the case of mind and mental health, that ‘broadband internet’ bit (the complex messy bit) is of great importance.
I believe medical mental health researchers have missed this.
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Thank you Marvin, for making me feel like a shit. I am a Mad in America author, a Yale University graduate with a BA in Psychology- Neuroscience track, and a CIIS Masters of Counseling Psychology, and a psychiatric survivor with a Bipolar 1 diagnosis, and a have 14 years of experience in community mental health as a researcher with the University of Pennsylvania, as a trainer, as a writer, as an advocate, as a Peer Support Specialist, and in administration at the City Philadelphia Department of Behavioral Health. I recently blogged about my journey to get psychiatric drug free after 14 years, after I was forced medicated at Yale, on Mad In America.
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If Clozopine is so safe, why does it require weekly blood testing for low white blood cell counts? Here are some of the side effects of clozopine:
• Feeling sleepy or drowsy
• Making extra saliva (spit) and dribbling, alternatively you may notice a dry mouth
• Loss of appetite
• Fast heart rate
• Feeling sick
• Constipation
• Gaining weight
• Being unable to hold your urine, alternatively you may find it hard to go to the toilet
• Feeling dizzy, particularly if you stand up quickly
• Jerking or fits – known as Tardive diskensia, and they are permanent.
• Blurred vision
What I will tell you about these side effects, having seen them in person in many people over the course of many years, is that they are not mild, but psychiatrists consistently dismiss them as such. People start wetting the bed, can’t move their bowels (without more medication), drool, feel nauseous all the time, gain weight without increasing their food intake. I have seen people stay in bed all day because they are so tired and then be told they are “non compliant” because they do not go to some day care center where they are talked at and judged all day long. Oh, and the medication does not stop the voices. So now they are walking around town smelling like urine because they become incontinent, drooling and talking to themselves, and if they are especially lucky, they get to have uncontrolled jerking movements as well. I am not sure how this is “treatment”.
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Brian – I see that you are a peer support so I’m wondering if you tell your clients not to take clozapine if it is prescribed for them? Or any other antipsychotic. The blood testing is actually done once a month after it is established and the incidence of agranulocytosis is only 1 in 100. See my post on clozapine at https://dawsonross.wordpress.com/2015/07/06/time-to-re-evaluate-clozapine-use-for-improved-schizophrenia-outcomes/
Every drug has a similar list of potential side effects as I’m sure you’ve seen on the TV ads for the different ones. As you know, not everyone gets all of the side effects with any drug and some get none. Some have severe effects and others only mild. Each individual needs to evaluate for themselves the benefit they may or not get from a particular drug and the side effects it may give them. There are drugs for hypertension that I absolutely will not take because of their side effects on me and others that work and cause no problem. As one person said to me about the weight gain of an antipsychotic “I’d rather be fat than psychotic”. That was his choice.
Marvin
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