As a geriatric psychiatrist, now mostly retired, I’ve been sceptical throughout my entire career about the existence of the entity labeled “schizophrenia”. And for many years, when the subject came up, I might tell bits and pieces of my relationship to this disorder. But the idea of putting this story on paper germinated in September 2019, after I had attended a lecture at the Atwater Library given by Susan Doherty. She was discussing her newly published book, “The Ghost Garden: Inside the lives of schizophrenia’s feared and forgotten”. We spoke briefly after her talk; I mentioned that I had worked for years at Douglas Hospital, the psychiatric institution which figured prominently in her story and where she had volunteered since 2009. She expressed interest in hearing what I thought of her book. I promised to read it and get back to her.
After a couple of chapters into her engaging book, I reluctantly concluded that Susan had fallen into an extremely common misconception: individuals who manifest psychotic symptoms such as hallucinations or delusions must have schizophrenia, even when these symptoms are caused by bipolar affective disorder, as seemed to be the case for Caroline, the protagonist in Susan’s book. I was now somewhat worried about expressing my point of view to her, as in my experience people who are heavily invested emotionally in their beliefs may feel under attack when those beliefs are challenged. I felt I would need to make a more convincing case for my opinion.
But it wasn’t until Quebec’s Director of Public Health, Dr. Horacio Arruda, made an unfortunate remark in a press conference (listen at minute 27), about how his flip-flops on recommendations for dealing with the COVID-19 pandemic might make him appear to be a “psychotic schizophrenic”, a remark which raised the ire of myself and my fellow AMI-Quebec board members, that I felt compelled to start writing.
Lumpers vs splitters
When I studied engineering in the late 1960’s, I became aware that there were two major ways in which most people approached the world. Let’s call the two types, lumpers and splitters. The dictionary defines lumper as “a person (especially a taxonomist) who attaches more importance to similarities than to differences in classification”. Contrasted with splitter, defined as someone who attaches more importance to differences than to similarities. Clearly, the fact that I am focusing on the difference makes me a splitter.
Even before I started medical school, I was becoming aware that in medicine, the tendency of lumpers to dominate thinking led to bad outcomes. The example I had in mind was schizophrenia. It seemed to me that how this illness was diagnosed was by lumping together all sorts of psychotic phenomena and calling it schizophrenia. And I believed that the only way we could ever gain a better understanding of psychosis would be if we attempted to split out the various subtypes of psychosis and study what differentiated individuals experiencing these subtypes, in terms of genetics, environment, associated illnesses, lab and imaging findings, and responses to a variety of treatments. Not doing so would consign people with psychosis to treatments not appropriate for their underlying condition, treatments which might harm more than help, while denying them other, possibly more effective and less harmful, treatments.
The brain as a computing device
Having studied and then working for a number of years as a computer systems engineer, I was fascinated on going back to school to study medicine to learn that the basic underpinnings of the brain and the nervous system were amenable to being modeled by computers. I started reading, and thinking, and looking for suitable software platforms to do this sort of modeling. McGill was the right place to look into this: neuropsychology breakthroughs had been made by McGill researchers such as Donald O. Hebb and Brenda Milner. Hebb had proposed what is now known as the Hebbian rule for synaptic modification, still the most plausible explanation, and posited that hallucinations might be caused by lack of external sensory stimulation.
I was also greatly influenced by a book that I had found by chance while perusing the stacks in the McGill Medical Library: Logic of the Living Brain, by Gerd Sommerhoff1. In 1989, after carrying out a number of experiments based on the ideas of Sommerhoff and of other pioneers in the field of artificial intelligence and machine learning, I wrote an essay outlining how my thinking had evolved.
Briefly, Sommerhoff had demonstrated a potential mechanism for how brains learn and then identify patterns. Take spoken language: clearly, we possess the means in our brains both to produce speech and to understand what is said by others. What if, when listening, we employed our speech generation circuitry to help us predict what the speaker is saying? We know this is highly likely; it would explain how we can maintain speech recognition even in very noisy environments when we may not actually hear a lot of what is being said, and why people learning to read often can be seen to “mouth” the words they are reading.
How brains might produce hallucinations
Thus, the speech reception circuitry can be understood to receive inputs from both the external world, via our ears, and from our internally generated speech. If the external stimulus is low, as Hebb described, then the internally generated speech might be the main or only input. Thus, an auditory hallucination.
Clearly, there will be threshold effects at work. Internally generated speech is below a threshold for our conscious awareness, for most of us, most of the time. But if brain functioning is compromised for some reason, the threshold for conscious awareness might shift, and our ability to separate out internally generated speech from speech we actually hear might be diminished. Is this what happens in individuals experiencing psychosis?
Under what conditions might auditory hallucinations occur, then? Delirium, dementia, severe depression, mania, what used to be called “mental retardation”, paranoid disorders, personality disorders, factitious disorders, and of course, schizophrenia.
Consequences of lumper thinking
Now, if schizophrenia were carefully defined, and clinicians took care when dealing with someone experiencing hallucinations to rule out the various other possible causes for those hallucinations (ie to think like splitters and not like lumpers), things might work acceptably. Sadly, the history of schizophrenia diagnosis has not followed such a benign course, with the result that many individuals with other conditions get diagnosed as having schizophrenia and are then put on antipsychotic medication, often in depot injection form, and often against the person’s wishes.
Treatment side effects confirm diagnosis
Antipsychotic medication, especially if given over longer periods of time, can cause serious side effects, including parkinsonian symptoms and tardive dyskinesia. Truncal rigidity, mask-like facies, and reduced arm swing when walking are characteristic of the parkinsonian side effects which typically manifest after 2 or 3 months on an antipsychotic medication. These side effects sufficiently resemble the negative symptoms of schizophrenia that for many clinicians, their initial diagnosis of schizophrenia is confirmed and ongoing treatment with the antipsychotic is wholly justified. The Canadian Journal of Psychiatry in 1990 published a letter2 by Dr. Virginia Duff3 and myself about this not uncommon phenomenon.
Another parkinsonian manifestation, less studied than the motor symptoms, is aprosodia, the lack of inflection in speech. It turns out that individuals experiencing aprosodia also have diminished capacity to perceive, even at an unconscious level, prosody in the speech of others.
I would like you to reflect on the significance of this deficit in producing or perceiving speech prosody, taken together with the diminished body language and facial expression. These are the mechanisms by which we communicate our emotional state to others, and perceive, usually at an unconscious level, others’ emotions. Someone on antipsychotics who is no longer able to adequately express or perceive emotions is effectively crippled when it comes to long-term relationships, whether with family, friends, love interests, coworkers, or bosses! Since diminished functioning in work, love, or play is a diagnostic criterion for schizophrenia, medication side effects again serve to confirm a diagnosis of schizophrenia, even if it was incorrect in the first place!
Going back to the distinction between lumpers and splitters, I believe that even a quite simple computer model of brain functioning could be trained to distinguish aprosodic speech from normal speech, and further, to distinguish between aprosodia caused by Parkinson’s disease and that from antipsychotic medication. A classifier that examined speech samples could be trained to identify a number of other conditions that give rise to particular speech patterns.
Diagnostic criteria derived from medication side effects
The phenomenon of psychiatrists “confirming” their diagnoses of schizophrenia on the basis of side effects from antipsychotic treatment is fairly common, in my opinion. Moreover, there is also the possibility that the diagnostic criteria themselves are based at least in part on observations made on patients who were on medication and manifested side effects. Antipsychotic medications were introduced to North America by Dr. Heinz Lehmann (one of my teachers at Douglas Hospital) in the early 1950’s and gained widespread use, well before diagnostic criteria based on lists of symptoms were formulated in the late 1970’s. Dr. Lehmann was much-honoured for his work with chlorpromazine and other psychotropic medications, including imipramine; some considered him the ”Father of modern psychopharmacology”.
Diagnosis of schizophrenia was problematic well before that, however. Dr. Lehmann attempted to teach us psychiatry residents something called “Praecox feeling”. Emil Kraepelin, a German psychiatrist, had coined the term “dementia praecox” in his influential, multivolume textbook of psychiatry in 1893. Based on his observations, Kraepelin had dichotomized (obviously, he was a splitter!) the previously unitary concept of psychosis into manic depression and dementia praecox, the latter corresponding roughly to hebephrenia, or hebephrenic schizophrenia. Decades later, the Dutch psychiatrist Rümke suggested that a psychiatrist would experience a characteristic feeling of bizarreness on encountering a person with schizophrenia, and that this “praecox feeling” was a key feature for diagnosis. Unfortunately, being entirely subjective, the concept was difficult to teach. At Douglas Hospital, a person previously diagnosed with schizophrenia would be brought into a small classroom where a group of residents was asked to pay attention to and remember the “feeling” that they experienced in the presence of this patient. In future encounters with other patients, experiencing that particular feeling would help in applying the diagnostic label of schizophrenia, we were told.
But what if the “feeling” we experienced when the patient entered the room was our subjective emotional response to body odour, oral hygiene, style of dress, or grooming? Should we really make psychiatric diagnoses based on olfactory perceptions? Maybe! Some people can accurately diagnose (and assess the severity of) Parkinson’s disease based on the sufferer’s odour, even before symptoms or signs manifest. And dogs have been trained to sniff out the presence of certain cancers. But before we can even begin to do the research necessary to find a smell test for schizophrenia, we need a gold standard for diagnosing the condition, assuming, of course, that it even exists. In the meantime, I find it appalling that psychiatrists continue to use “praecox feeling” to label patients as having schizophrenia4.
Brain bank study
I had other experiences which led me to question how well psychiatrists were able to diagnose schizophrenia. In my my third year of residency, I participated in a research project involving the brain bank at Douglas Hospital. If I recall correctly, the principal investigator wanted to do a study of receptors in the brains of patients with schizophrenia; these brains were being preserved at very cold temperatures in a special facility at the Douglas. Many of these brains had come many years earlier from a psychiatric hospital in Montreal’s east end, the Hôpital St-Jean-de-Dieu, renamed Hôpital Louis-H. Lafontaine in 1976. My job was to go to their medical archives and pore through the medical records (preserved on microfiche) of the patients whose brains were being studied, and prepare a summary of their clinical history.
After doing this for several days and about a dozen patients, I reluctantly concluded that with one exception, all of these patients when admitted had been either very depressed or manic, according to the usually very complete descriptions provided by the medical and nursing staff at the time. The one exception was a person with mental retardation. Since mania or depression or mental retardation excludes a diagnosis of schizophrenia, not one of these brains could be said to be from a person with schizophrenia. Sadly, when I reported this to my research supervisor and to the then Director of Research, the latter totally misinterpreted my misgivings, and accused me of not being committed to the research project!
Tapering and discontinuing antipsychotic medication
After completing my residency training in 1985, I joined the medical staff of Douglas Hospital, and took over responsibility for an admitting unit for patients with chronic psychotic conditions living in the community (often in psychiatric group homes) who had decompensated and needed to be stabilized before going out to live as outpatients again. Durations of these admissions were usually several months.
Given my concern with medication side effects and the possibility that patients were being mislabeled with schizophrenia, I obtained their consents to gradually but systematically taper the dose of the antipsychotic depot medication they were receiving by injection every 2 to 4 weeks. As expected, the parkinsonian side effects, including affective deadening, diminished. Also not unexpected was a distressing worsening of tardive dyskinesia. But instead of a more pronounced picture of schizophrenia, these patients developed manic symptoms, or became depressed!
From my point of view, this was an excellent outcome. Depression or mania points to bipolar disorder, for which there are good treatments such as lithium. Many bipolar patients are able to lead a relatively normal life, managing jobs and relationships.
Bipolar patient enrolled in schizophrenia drug trial
One incident stands out in my mind, however. I was covering the Emergency Department at the Douglas one weekend. I was called on Sunday evening to evaluate a patient, a man in his forties who several days earlier had been an inpatient but had run away. He was enrolled in a research study to evaluate the effectiveness of a new medication for schizophrenia.
The man sitting across from me, dressed in a natty 3-piece pinstriped suit, slim, neatly groomed, and with speech suggesting a good education, described himself as the owner of a successful business, married, with a couple of children. He gave a history of his illness that was entirely consistent with bipolar disorder. I was unable to see on what basis he would have been enrolled in a schizophrenia study. So the following morning, I phoned his psychiatrist, the investigator in this drug company sponsored trial. We agreed that the man had bipolar disorder. When asked why he was enrolled in a schizophrenia study, his psychiatrist admitted, somewhat sheepishly I thought, “Well, he meets the criteria for schizophrenia!” I was astonished, because it was true. The research diagnostic criteria for schizophrenia were so broad that even a bipolar patient could fit.
Implications of sloppy research
Of course, sloppy diagnosis in research has far-reaching implications. Essentially, it renders suspect just about everything we think we know about schizophrenia! It makes a mockery of our adherence as psychiatrists to what we call “evidence-based psychiatry”.
Clearly, this lack of diagnostic rigour does not benefit our patients, who are likely to be prescribed ineffective and harmful treatments which interfere with their jobs, their relationships, and even the joys of life! And it really doesn’t help us psychiatrists!
Schizophrenia in our culture
As a longtime member of AMI-Quebec, I attended in September 2002 their John Hans Low Beer Memorial Lecture, delivered that year by Fred Frese, PhD (Ohio, USA). Dr. Frese, who passed away in 2018 at age 77, had been hospitalized in his middle 20s while serving as a U.S. Marine captain, receiving a diagnosis of paranoid schizophrenia. His story was recounted in the National Post in 2010, in an article entitled ”The Saturday Interview: Inside the beautiful mind of a schizophrenic psychologist”. In the opinions of many, Fred Frese was the ideal “poster boy” for schizophrenia. In over a thousand lectures and talks, he demonstrated how someone who fully expected to be institutionalized for life, could become “an especially powerful inspiration” for people with this illness.
Dr. Frese gave a funny, engaging talk about his life story and about his illness. I was immediately struck by the similarity between his stage persona and the actor Robin Williams at his manic best. Fred talked about his children, some of whom had been hospitalized with a diagnosis of schizophrenia, and were doing well on medication (lithium, a mood stabilizer). After the lecture, I had the opportunity to talk to him, and we subsequently exchanged email messages.
I expressed to him my doubts about his diagnosis, suggesting that the history of his illness, his family psychiatric history, and his “manic” stage presence pointed to bipolar affective disorder. He responded that I had a point, and that others had suggested the same. However, based on his very strong identification with the experiences of the brilliant mathematician John Nash in the book “A Beautiful Mind” and the TV documentary “A Brilliant Madness”, Fred was pretty sure he had, like Nash, schizophrenia. And numerous psychiatrists had maintained his “official” diagnosis of schizophrenia over 36 years.
Now, Fred had reported in his talk that he had developed tardive dyskinesia, a particularly insidious neurological disorder with involuntary, repetitive movements typically including grimacing, sticking out the tongue, and smacking the lips. This medication side effect occurs in 20 to 30% of people taking antipsychotic medication for a number of years. In many, the condition is permanent, even if the medication that caused it is stopped. In fact, decreasing or stopping the medication often makes the movements worse!
So, is it possible that having a disfiguring and very likely permanent side effect of a prescribed medication, might influence the prescriber to maintain an “official” diagnosis which justifies prescribing the offending medication? Let’s imagine a psychiatrist telling a patient, “You know that illness, schizophrenia, that I’ve been saying for many years that you have? Well, I was wrong. It turns out you really have bipolar disorder. And the medication that I’ve been prescribing for you all these years? Well, that was the wrong medication for your illness, bipolar disorder. And you know those movements of your tongue and lips that you’ve been experiencing for many years now? Well, you probably wouldn’t have those now, if I had given you the correct diagnosis in the first place and put you on the right medication for that condition. I’m terribly sorry that this has happened to you!”
In my email to Fred, I posited this theory: “While I believe that I mentioned to you the reluctance that psychiatrists might have in changing their diagnosis for a patient after 10 or 20 years, because of their emotional investment, an even more important factor might be a fear of lawsuits. For example, if a person was treated with antipsychotic medication which caused tardive dyskinesia, on the basis of the person having schizophrenia, a change in diagnosis to one of bipolar disorder might stimulate the patient to question the appropriateness of long-term treatment with antipsychotics when a mood stabilizer might have been more appropriate and less harmful.”
Fred Frese admitted to having been powerfully influenced in his acceptance of a paranoid schizophrenia diagnosis by what he saw as similarities to another individual, John Nash. Nash, although having the same diagnosis, became quite famous as a mathematical genius and Nobel laureate (Frese had taken advanced studies in math and science; this may have contributed to his identification with Nash).
In an interview when he was 76, Nash reported hearing voices which he gradually learned to ignore, and also reported believing at one point that aliens were trying to contact him through the New York Times newspaper. He travelled around Europe trying to renounce his U.S. citizenship and achieve refugee status. Although he himself had not had any episodes for years when interviewed, his son had been ill, apparently somewhere on a spectrum between schizophrenia and bipolar disorder, and possibly taking medication for the latter condition.
Let’s consider his paranoid delusion. Nash believed aliens wanted to make contact with him. Why him? Why not the U.S. president? Or the pope? Nash almost certainly believed that he was special (and of course, he was). Most individuals with paranoid delusions believe they are special, and most of the time, this is a grandiose belief. As a clinician, I would ask, “Do you have any special powers or talents, or a special mission in life?”, and “Do you have a special communication with God, or with the devil?” Paranoid people almost always respond in the affirmative. Why is this?
Because paranoia and grandiosity are two sides of the same coin; they invariably go together. If you believe you’re somehow special, then others will be envious of you and will want to diminish you; while if you believe that the CIA is out to get you, it can only be because you are somehow very important to them. I can’t express this any better than Nash himself, in a PBS interview: “When I started thinking irrationally, I imagined myself as really on a Number 1 level. I was the most important person of the world, and people like the Pope would be just like enemies, who would try to put me down in some way or another, or the president.”
So, Nash was likely grandiose. As “a figure seen scribbling away on blackboards late into the night” he was also energetic and may not have needed much sleep.
So was schizophrenia an appropriate diagnosis for Nash? Or had he been experiencing manic episodes?
The Ghost Garden
This book by Susan Doherty5 that I mentioned in my introduction, I had found very difficult to read. I had worked at Douglas Hospital for 10 years with some of the most ill and difficult to treat individuals in the system (at the time, the Specialized Treatment and Rehabilitation Programme (STRP) accepted anglophone patients from all over Quebec when those patients were too difficult for their local facilities to manage). These individuals were often overwhelmed by the challenges they faced in trying to lead lives with some semblance of normalcy, and it tore at my heartstrings. It also made me angry to realize that many of their problems were caused by the medications prescribed by my psychiatrist colleagues.
Doherty’s book stimulated painful memories and re-ignited my anger. But I hope that the messages in this essay will somehow get to the people with psychotic illnesses and to their families, and give them the agency and the rationale for deciding what treatments to accept and which to refuse.
Hidden Valley Road
Like Susan Doherty’s book, a recently published book by Robert Kolker entitled “Hidden Valley Road: Inside the Mind of an American Family” 6 presents a popular version of schizophrenia and its effects on stricken individuals and their families. The Galvin family, with 12 children, 6 of whom have a psychotic illness, certainly has more than its share of difficulties. The main protagonist, Donald, believes that St. Ignatius conferred upon him a degree in “spiritual exercise and theology” and he prays loudly all day and most nights. He believes his little sister is Mary, the Mother of God, and is most reverential towards her.
The youngest boy, Peter, was manic and violent.
Matthew was either convinced that he was Paul McCartney, or believed that his moods controlled the weather.
Joseph heard voices coming from a different time and place. A time traveller, perhaps?
The author believes that they all have schizophrenia. Even more worrying, all the researchers that he references seem to believe that schizophrenia is some sort of unitary concept. They are all “lumpers”! And especially worrying is that the original divide by Kraepelin between manic depression and dementia praecox seems to be getting entirely glossed over.
Bipolar affective disorder vs schizophrenia
Kraepelin’s distinction may have been somewhat academic at the time he wrote his textbook, as no effective treatments were available. But that’s no longer the case. And actually, there are a number of other reasons to place a strong emphasis on looking for bipolar disorder.
First, bipolar disorder is easy to diagnose. On a number of occasions, when a manic individual was brought to the ER by the police, I was able to make the diagnosis while in the hallway leading to the ER. Angry, rapid, loud, pressured speech; talking more or less continuously, and expressing paranoid ideas. Obtaining a history of prior episodes, and/or a family psychiatric history of depression or mania, would help clinch the diagnosis. Of course, ruling out other conditions, such as stimulant drug use or diseases affecting the brain (eg, tumours) that could cause mania would also be necessary.
Depression can be more difficult. Quite often, there are manic symptoms such as irritability mixed in with depressive symptoms, which can be confusing to the clinician.
Only when you’re sure that there is no possibility of bipolar disorder, or any of the other conditions which can cause psychosis, should you even entertain the possibility of schizophrenia. Because there are no symptoms, signs, lab tests, brain imaging, or any other things which are “pathognomonic” for schizophrenia; it has to be considered a diagnosis of exclusion, that is, all other possible diagnoses have to first be systemically considered and eliminated for a given patient.
While antipsychotic medications continue to be heavily prescribed for people with psychosis, on the basis of being diagnosed with schizophrenia, these drugs do not actually treat any condition. At best, they reduce some of the symptoms of psychosis, and can be effective at “calming” an agitated individual.
Contrast this with treatments for bipolar disorder. Mood stabilizers including lithium are effective at reducing relapses, and both acute mania and depressive episodes respond rapidly to both medication and behaviour changes that modify sleep patterns. However, these remedies for bipolar affective disorder are unprofitable for the players in the psychiatry industry: the pharmaceutical companies who sell antipsychotic medication; the “opinion leader” psychiatrists who receive money from those companies; the researchers and their institutions whose research funding comes from those companies, and the journals publishing the research, supported through advertising paid for by those companies. Is it any wonder that all of these people and their organizations prefer to diagnose people experiencing hallucinations as having schizophrenia?
It is particularly appalling when teenagers who are “at risk” for a psychotic disorder, are placed on antipsychotic medication as a “preventive” measure, in early intervention clinics springing up all over Canada and the U.S.
Scientists look at schizophrenia
While a PubMed search on the word “schizophrenia” turns up over 140,000 articles, it is safe to say that the vast majority of these adopt the “lumper” conception of the word. But there are scientists who, like myself, raise questions.
In 1973, Dr. David Rosenhan published in the journal Science 7 the results of an experiment: “Once eight pseudopatients had gained admission to mental institutions (by saying they heard voices), they found themselves indelibly labeled with a diagnosis of schizophrenia — in spite of their subsequent normal behavior. Ironically, it was only the other inmates who suspected that the pseudopatients were normal. The hospital personnel were not able to acknowledge normal behavior within the hospital milieu.”
I read about Dr. Rosenhan’s experiment in my final year of medical school, in a course which encouraged us to explore alternative ways of looking at medicine. McGill’s medical school, perhaps more enlightened than many, had us read Ivan Illich’s book “Limits to Medicine. Medical Nemesis: The Expropriation of Health”8. Illich included the above quote from Dr. Rosenhan in a footnote.
Two psychiatrists at McLean Hospital of Harvard Medical School, Harrison G. Pope Jr. and Joseph F. Lipinski Jr. wrote in 1978 in the Archives of General Psychiatry 9 “…overreliance on presenting psychotic symptoms, and consequent overdiagnosis of schizophrenia and underdiagnosis of affective disorder, are particularly widespread in contemporary American diagnostic practice.” They pointed out that while Kraepelin had emphasized course of the illness to distinguish “dementia praecox” from manic-depressive illness, subsequent writers such as Bleuler and Schneider emphasized symptoms, which evolved to the diagnostic creed “even a trace of schizophrenia is schizophrenia”.
Pope and Lipinski’s seminal paper may have actually had an effect on diagnostic practice. Stoll et al, in the American Journal of Psychiatry in 199310, looked at diagnostic frequencies of discharge diagnoses for the years from 1972 to 1988 at six major North American psychiatric teaching hospitals (McLean Hospital, Harvard; the Institute of Living; Cornell Medical Center; the Clarke Institute at University of Toronto; the Menninger Clinic, and the Yale Psychiatric Institute). They reported “Schizophrenia diagnoses decreased from a peak of 27% in 1976 to 9% in 1989 (a threefold decrease), and diagnoses of major affective disorders rose from a low of 10% in 1972 to 44% in 1990 (a fourfold increase)”.
Unfortunately, practices at important teaching institutions may not be widely copied, and over time become less influential. Jim van Os, professor and chair of the Department of Psychiatry and Psychology at Maastricht University Medical Centre in the Netherlands, wrote an opinion piece for the British Medical Journal, provocatively titled ‘“Schizophrenia” does not exist’11. Dr. van Os points out that the different psychotic categories are likely part of the same spectrum syndrome with a lifetime prevalence of 3.5%, of which “schizophrenia” represents less than ⅓, but is the only condition in this spectrum described as a “debilitating neurological disorder”. He proposes that the term be dropped, and instead suggests “psychosis spectrum syndrome” or “psychosis susceptibility syndrome” be used for the whole gamut of psychotic conditions.
What’s down the road?
The point of view expressed by Dr. van Os, above, seems to be finding traction. Part of this, at least in the U.S., is growing dissatisfaction with the American Psychiatric Association’s “Diagnostic and Statistical Manual of Mental Disorders” (DSM) currently in its fifth incarnation (DSM-5, published 2013). This manual serves as the principal authority for psychiatric diagnoses in the United States; the rest of the world uses the “International Classification of Diseases” (ICD) produced by the World Health Organization (WHO). The most recent edition is ICD-11.
Criticism of DSM-5 focuses not only on the poor reliability and validity of many of its diagnoses, but also on the likelihood of undue influence on its content by the pharmaceutical industry. When the National Institute of Mental Health (NIMH) director Thomas R. Insel, MD, wrote in an April 29, 2013 blog post about the DSM-5’s weakness being its lack of validity, and that “Patients with mental disorders deserve better”, there was a flurry of sensationalistic reporting12 that the NIMH was abandoning the DSM. Actually, Insel was attempting to promote an NIMH effort to develop a new classification system, Research Domain Criteria (RDoC), currently for research purposes only.
The RDoC project, initially proposed in 2008, aims “to address the heterogeneity in the current nosology by providing a biologically-based, rather than symptom-based, framework for understanding mental disorders”. Two recent publications discuss the RDoC approach to psychotic disorders and the schizophrenia spectrum. Cuthbert and Morris13 point out that “many (if not most) treatment plans are focused on specific problems (e.g., sleep, attention, interpersonal relationships) irrespective of formal diagnosis” and that some clinical programs are specifically recognizing that diagnoses for first-episode psychosis patients often change over time.
The other is a chapter in the book “Psychotic Disorders: Comprehensive Conceptualization and Treatments”14 published in 2020 (one of the book’s editors is the Dr. Jim van Os mentioned above). Its preface includes the statement “People with schizophrenia as a conventional diagnosis display substantial heterogeneity—both between- and within-course in persons—in psychopathology, treatment response, and outcome. And all conventional psychosis diagnoses extensively overlap biologically. Therefore, it is time to focus on the dimension of psychosis, study its components carefully, and use the heterogeneity within its broad boarders to segregate biologically based subgroups as they emerge as latent structures within the psychosis dimension which have common outcomes, treatment response, and biology”.
So there is reason to hope. If these approaches gain traction, it will be nothing less than a revolution in psychiatry. Long overdue!
I’ve suggested, above, that an important influence on the “lumper” approach to schizophrenia is money-driven. Treating schizophrenia with antipsychotics is highly profitable for drug companies, and the money trickles down to the doctors who prescribe these medications, the researchers who study them, the institutions where those studies take place, and the journals that publish the studies. Of course, the pharmaceutical industry influences other areas of medicine also; here is a list of some books addressing this issue, ordered by year of first publication:
1975: “Limits to Medicine. Medical Nemesis: The Expropriation of Health” by Ivan Illich.
As noted above, I read this book in medical school, and was most impressed by Illich’s wide-ranging and carefully documented research. He gave many examples of the unhealthy relationships between pharmaceutical companies, doctors, and government regulators.
2004: “Let them eat Prozac : the unhealthy relationship between the pharmaceutical industry and depression” by Dr. David Healy15.
Dr. Healy, a professor of psychiatry at Bangor University in the U.K., has written more than 150 peer-reviewed articles, 200 other articles, and 20 books. His research interests include the contribution of antidepressants to suicide, and the conflict of interest between pharmaceutical companies and academic medicine. He is perhaps best known to Canadians for his well-publicized appointment to a post at the University of Toronto’s Centre for Addiction and Mental Health (CAMH), an appointment that was rescinded even before he started. Rumour had it that a big donor to CAMH, a manufacturer of a big-selling antidepressant, had prevailed upon CAMH to withdraw the appointment because of Healy’s public statements that their drug increased suicide risk.
2010: “Bad Science: Quacks, Hacks, and Big Pharma Flacks” by Dr. Ben Goldacre16.
Dr. Goldacre, also based in the U.K., had been writing the “Bad Science” column in The Guardian since 2003. In the words of reviewer Simon Singh, “Ben Goldacre uses a brilliant mix of science and wit to challenge and investigate alternative therapies and the big pharmaceutical companies. Bad Science is an invaluable tool for anybody who wants to protect themselves from the snake oil salesmen of the twenty-first century.”
2010: “Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America” by Robert Whitaker17.
Whitaker, a science and history writer, investigated why the number of disabled mentally ill in the U.S. had tripled over two decades. Among many other assertions, he claimed that the psychiatric establishment had thoroughly succeeded in keeping from the public the conclusions of a number of published studies, such as:
“1992: Schizophrenia outcomes are much better in poor countries like India and Nigeria, where only 16% of patients are regularly maintained on antipsychotics, than in the United States and other rich countries, where continual drug usage is the standard of care…
1998: Antipsychotic drugs cause morphological changes in the brain that are associated with a worsening of schizophrenia symptoms…
2007: In a fifteen-year study, 40% of schizophrenia patients off antipsychotics recovered, versus 5% of the medicated patients.” (pp308-9)
I emailed Whitaker, who kindly provided me with a list of the journal references on which he had based his assertions.
2012: “Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients” also by Dr. Ben Goldacre18.
Goldacre gives several concrete examples regarding antipsychotic medications. On pages 180-2 he refers to the work of researcher Daniel Safer who pulled together research using odd doses of comparator drugs which would make the new drug look good. For example, new-generation antipsychotic drugs were compared, in six studies, with haloperidol at 20 mg per day, which is quite a high dose and certainly a dose where there will be lots of side effects. On p293 Goldacre reports on internal documents from Lilly, brought to light in a court case against this drug manufacturer. The documents refer to ghostwriting an article about the antipsychotic olanzapine (Zyprexa), and about utilizing Key Opinion Leaders to prepare the field for the launch of an injectable formulation of this medication.
2013: “Deadly medicines and organized crime: how big pharma has corrupted healthcare” by Dr. Peter Gøtzsche19.
I will just quote from a review I wrote in 2016: “I’ve been reading a most interesting book, titled “Deadly medicines and organized crime: how big pharma has corrupted healthcare,” by Dr. Peter Gøtzsche. Dr. Gøtzsche, a specialist in internal medicine and professor at the University of Copenhagen, co-founded the Cochrane Collaboration in 1993 and established the Nordic Cochrane Centre.
The book goes into lurid (but exquisitely documented) detail about how big pharma, like big tobacco, commits massive crime and peddles death. I am alternately horrified and astounded by the revelations, coming one after the other and implicating all of the major pharma players, with frequent complicity by government agencies which are supposed to be monitoring and overseeing.
But I differ philosophically from Gøtzsche on the idea that big pharma peddles death. A dead customer cannot earn you profit (unless you’re a pathologist or work in the funeral industry). I believe, instead, that the modus operandi of these companies is based on four strategies…” Read more
2014: “La vérité sur les médicaments : comment l’industrie pharmaceutique joue avec notre santé” by Mikkel Borch-Jacobsen20.
Borch-Jacobsen, professor of comparative literature at the University of Washington, coordinates contributions by a number of experts including Dr. John Abramson, professor at Harvard; Kalman Applbaum, professor of medical anthropology at the University of Wisconsin; Irving Kirsch, associate director of the Programme of Placebo Studies at Harvard; Peter Whitehouse, professor of neurology at the University of Cleveland and associate researcher at the University of Toronto.
p171: Bristol-Myers Squibb was fined $515 million for off-label marketing its atypical antipsychotic Abilify. This medication, approved for schizophrenia and bipolar I disorder, was being promoted for depression, hyperactivity, and dementia.
pp181-4: The State of Texas accused Johnson & Johnson and its subsidiary Janssen, the pharmaceutical that was marketing Risperdal, a second generation antipsychotic, of defrauding Medicaid through off-label marketing the drug for children and for sedating unruly geriatric patients. Texas sought $1 billion US in damages. After only 7 days into the trial, Janssen in 2012 agreed to pay $158 million to settle the claims. In court testimony, it came out that Janssen had made payments to a number of doctors and others responsible for determining the “algorithm” that Texas physicians should follow in treating certain conditions, including payments made to the director of NAMI in Texas. NAMI, the National Alliance on Mental Illness, is an organization founded in 1979 by a small group of families. Risperdal at the time was 45 times the cost of first-generation medications, and was considerably more problematic in causing rapid weight gain and type 2 diabetes. While the company was charged for the illegal activity of promoting off-label use of the medication, the evidence presented in court made it clear that Janssen was heavily engaged in promoting through misrepresentation the use of this medication even for approved indications.
Pp213-4: Internal documents from Lilly regarding marketing plans for its antipsychotic medication Zyprexa demonstrate clearly the process of “condition branding” in which certain poorly specified conditions are defined by the industry as responsive to their medication. By emphasizing in its advertising the target symptoms, the condition now becomes more clearly delineated by industry.
p220: Lilly in internal documents suggests to its sales personnel that bipolar disorder is present in 6% of the population rather than the 1-2% that is commonly accepted. This would multiply the potential market for Zyprexa several-fold.
p245: A physician using a computer belonging to the drug company Astra-Zeneca, made a number of modifications to the Wikipedia entry for Astra-Zeneca’s antipsychotic Seroquel (quetiapine) to remove a warning to parents that this drug could lead to suicide in adolescents taking it; other changed entries minimized the side effects of weight gain and of movement disorders.
p248: the physician employee of Astra-Zeneca also modified the Wikipedia entries for Bipolar disorder and bipolar spectrum disorder to suggest that many cases of depression or hyperactivity are really bipolar disorder and thus could be treated with their antipsychotic medication. In effect, they were modifying the diagnostic criteria to expand the market for their drug.
There are several more index entries for “schizophrenia” in the book (p256, p266, pp281-2, and p500), but the above gives the gist.
2015: “Deadly Psychiatry and Organised Denial”, also by Dr. Gøtzsche21
As in his 2013 book (see above), Dr. Gøtzsche continues in his methodical, detailed, and well-researched way to level devastating criticisms but this time focused on psychiatry. As before, he meticulously documents his claims, effectively preventing him from being sued for libel. I quote from the book:
“DSM-III from 1980 was replaced by DSM-IV in 1994, which was even worse than its predecessor and lists 26% more ways to be mentally ill. Allen Frances, chairman for the DSM-IV task force, now believes the responsibility for defining psychiatric conditions needs to be taken away from the American Psychiatric Association (APA) and argues that new diagnoses are as dangerous as new drugs: ‘We have remarkably casual procedures for defining the nature of conditions, yet they can lead to tens of millions being treated with drugs they may not need, and that may harm them.’ Frances noted that DSM-IV created three false epidemics because the diagnostic criteria were too wide: ADHD, autism and childhood bipolar disorder.”
- Sommerhoff G. Logic of the Living Brain. John Wiley & Sons Ltd; 1974:424. ↩
- Duff V, Olders H. Negative symptoms in schizophrenia.letter. Can J Psychiatry 1990;35(6):570-571. ↩
- Dr. Duff had worked at a psychiatric unit for outpatients with chronic psychoses, called the “Moditen Clinic” after the name of a commonly prescribed depot antipsychotic medication which was given by injection in the buttocks every two to three weeks. My wife in that era, a psychiatric nurse, worked at this clinic with Dr. Duff, and she told me about the coercive measures the clinic employed. Most of their clientele were unemployed and on welfare. Many of them were young males and were extremely reluctant to take the medication. To avoid the difficulties and time delays associated with getting court orders to treat these people against their will, the clinic staff hit upon the expedient of arranging for their monthly welfare cheques to be delivered to the clinic (the government department administering “Bien-être sociale” seemed quite OK with this!). Getting your cheque meant you had to show up at the clinic and accept your injection! ↩
- Moskalewicz M, Kordel P, Brejwo A, Schwartz MA, Gozé T. Psychiatrists Report Praecox Feeling and Find It Reliable. A Cross-Cultural Comparison. Front Psychiatry. 2021;12:642322. PMID 33746799 ↩
- Doherty S. The Ghost Garden: Inside the lives of schizophrenia’s feared and forgotten. Random House Canada; 2019:360. ↩
- Kolker R. Hidden Valley Road: Inside the Mind of an American Family. Random House Canada; 2020:352. ↩
- Rosenhan DL. On being sane in insane places. Science. 1973;179:250-258. PMID: 4683124 ↩
- Illich I. Limits to Medicine. Medical Nemesis: The Expropriation of Health. London, U.K.: Marion Boyars; 1995:294. ↩
- Pope HGJ, Lipinski JFJ. Diagnosis in schizophrenia and manic-depressive illness: a reassessment of the specificity of ‘schizophrenic’ symptoms in the light of current research. Arch Gen Psychiatry. 1978;35:811-828. PMID: 354552 ↩
- Stoll AL, Tohen M, Baldessarini RJ et al. Shifts in diagnostic frequencies of schizophrenia and major affective disorders at six North American psychiatric hospitals, 1972-1988. Am J Psychiatry. 1993;150:1668-1673. PMID: 8214175 ↩
- van Os J. “Schizophrenia” does not exist. BMJ. 2016;352:i375. PMID: 26837945 ↩
- See, for example: New Scientist; Huffington Post ↩
- Cuthbert BN, Morris SE. Evolving Concepts of the Schizophrenia Spectrum: A Research Domain Criteria Perspective. Front Psychiatry. 2021;12:641319. PMID 33716834 ↩
- Tamminga CA, Os JV, Ivleva E, Reininghaus U. Psychotic Disorders: Comprehensive Conceptualization and Treatments. Oxford University Press, USA; 2020:708. https://doi.org/10.1093/med/9780190653279.001.0001 ↩
- Healy D. Let them eat Prozac : the unhealthy relationship between the pharmaceutical industry and depression. New York: New York University Press; 2004:xvi, 351. ↩
- Goldacre B. Bad Science: Quacks, Hacks, and Big Pharma Flacks. Toronto, Canada: McClelland & Stewart; 2010:304. ↩
- Whitaker R. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY, U.S.A.: Crown; 2010:416. ↩
- Goldacre B. Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients. Toronto, Canada: McClelland and Stewart; 2012 ↩
- Gotzsche PC. Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare. Radcliffe Publishing Ltd.; 2013:320 pages. ↩
- Borch-Jacobsen M. La vérité sur les médicaments : comment l’industrie pharmaceutique joue avec notre santé. Gallimard Limitée – Édito; 2014:528. ↩
- Gøtzsche PC. Deadly Psychiatry and Organised Denial. Art People; 2015:378 pages. ↩
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