Schizophrenia: What? How? Does it exist?

Schizophrenia:

What? How? Does it exist?

This symposium was held on the afternoon of April 19, 2005 in Roermond, in the southeast of the Netherlands. The language was Dutch. No credits for physicians were mentioned. Participation was free of charge. MeTZelf members Joe Craft and myself, Mira de Vries attended.

The symposium was wholly financed by Janssen-Cilag, manufacturer of, among other drugs, the slow-release (depot) forms of Risperdal and Ritalin, used to keep people, including children, in a long-term drugged state. Colossal conundrum: What was in it for Janssen-Cilag? It was abundantly clear, also to Janssen-Cilag who published the program, that the attitude towards psychiatric drugging would be disapproving. There could be no advertising because of the presence of lay people and the Dutch law. Only Janssen-Cilag's name was modestly mentioned. Nobody goes to his doctor and says, “Please prescribe me a drug produced by Janssen-Cilag.”

No expense had been spared. The symposium was held in a gorgeous hall in a luxury hotel. Janssen-Cilag provided the secretary who took care of the registrations and was on hand during the symposium. It also provided the microphones and audio-visual aids, complete with two smartly dressed gentlemen to operate them. Of course refreshments served by the hotel staff were also included. So again, what was in it for Janssen-Cilag?

The symposium was chaired by Professor Emeritus Marius Romme, psychiatrist, and Jan Verhaegh, an "ex-user" who is very active in the clients’ movement, and among other things represents the Netherlands at the ENUSP. It was supposed to be a debate between biopsychiatrist Professor René Kahn and social psychiatrist Professor Jim van Os on the question of whether the concept of "schizophrenia" should be abandoned.

Sandra Escher, whose name is usually attached to Romme's, had brought along a few copies of her thesis, fresh from the printer, Making Sense of Psychotic Experiences. The cover is adorned by a lithograph by the fantastic artist M. C. Escher, yes, related. Upon my request, she kindly gave me a copy.

Romme spoke the welcome message. He described the professional credentials of the two debaters. Not awaiting the outcome of the debate -- he never pretended to be neutral -- he asserted that only physicians who don’t know their clients well need the diagnosis of schizophrenia. Already thirty years ago Professor Herman van Praag, of whom debater Kahn had been a student, had noted that it is not knowable what is meant by schizophrenia. (Later at home I looked up H. van Praag on the Internet, and found that he has published together with the other debater, Van Os, who was probably also his student, as they are employed by the same university. Are the two debaters engaged in sibling rivalry?) There are other ways of explaining psychotic experiences, Romme said, and nothing effective in their treatment is forthcoming from psychiatrists. The diagnosis of schizophrenia should be abolished.

His words made me wish to comment that there isn’t much point to abolishing the term “schizophrenia” if we’re going to replace it with “psychotic experiences” and continue to talk about diagnoses and treatment. But I didn't have the chance.

Verhaegh addressed the audience, starting with the question, “Whom of you here are psychiatrists?” Of the approximately 100 people in the audience, over a third raised their hands. Verhaegh then continued to ask the same question regarding other mental health professionals, clients, and family members of clients. He did not ask whom of us were activists, so I didn't raise my hand. Then Verhaegh told us that an advisory bulletin to abolish the term schizophrenia had been put out by his regional branch of the clients’ union. This debate was suggested by the same group. I wonder whether it is a coincidence that the professionals and activists who oppose the use of the term schizophrenia are all from the same area of the country?

According to the program, the first debater was to be Kahn, the opponent of abandoning the concept of schizophrenia. But Van Os spoke first, either because he had to leave early or because Kahn had not yet arrived. According to Romme's introduction, Van Os is a psychiatric epidemiologist, meaning he studies the spread of schizophrenia in the population. How can you study who gets it if you believe the concept to be invalid?

Van Os pointed out that mathematically, the diagnostic criteria of schizophrenia in the DSM can be combined in 114 different ways. So according to the DSM, schizophrenia can mean 114 different things. More copies of the DSM are sold than the Bible (an exaggeration, I'm sure). The term schizophrenia is necessary mainly to satisfy the requirements of third party reimbursement systems. According to research by Romme and Escher, 60% of the children who hear voices are no longer hearing them after four years. The British Psychological Society has found that many people who have psychotic experiences don’t seek treatment for them because they are not bothered by them. One of the causes of psychotic experiences could be social isolation and lack of social stimuli. It has been found that when rats are kept in boring cages, for instance without an exercise wheel, their brains shrink. (Interesting how both sides claim brain shrinkage to support their views.) This could explain why psychotic experiences are most frequent among disadvantaged groups. Researchers developed a checklist of subjects, such as loneliness and sexual satisfaction. They asked patients to check which subjects they would like to discuss with their psychiatrists, and they asked psychiatrists to check which subjects they thought their patients would want to discuss with them. The results illustrated that psychiatrists do not know what their patients would like to talk about, and are unprepared for those subjects. Even well-known biopsychiatrists like Nancy Andreasen are becoming critical of the criteria used for judging improvement in schizophrenia.

Van Os ended with a to me shocking announcement: he is invited to participate on a committee for the DSM V, something about “deconstructing psychosis.” But what is psychosis? He hadn't said. He started his speech by criticizing the DSM, and ended it by announcing his collaboration with it.

Both Van Os and Romme mentioned Professor Mary Boyle and the title of her book, Schizophrenia, A Scientific Delusion? several times, but I wonder whether they read beyond the title page. Everything Boyle says about schizophrenia would surely apply to their “psychotic experiences” as well. Both in my opinion failed to explain what is wrong with the concept of schizophrenia, precisely what Boyle does so well.

After he finished, Van Os quickly left. Romme explained that an unexpected urgent personal matter had come up. Then he said, “The second speaker, Professor Kahn, isn’t here yet … what did you say? He’s arrived? Good, then we can continue.” Was it planned that Van Os and Kahn would not be together in the same hall? What kind of a debate was this, where the debaters were not present at each others presentations? Was the symposium carefully orchestrated to minimize real discussion? To avoid challenges?

Kahn opened with a remark that was true enough. The social psychiatrists (meaning Romme and Van Os, among others) who claim to oppose the concept of schizophrenia nonetheless talk about psychoses. Why not just talk about schizophrenia? Psychosis is neither a diagnosis nor a disease in itself, but a symptom, like fever. Schizophrenia is a disease, like flu. Not everybody who has psychoses is schizophrenic. People with other diseases, like bipolar, also have psychoses. Whether people like it or not, schizophrenia is a real disease, therefore we cannot do without the concept. Schizophrenia is marked by the same characteristics as other diseases, namely it has a cause, called pathogenesis, and a course of development, which in schizophrenia is always negative or degenerative. Kraepelin, the discoverer of schizophrenia, closely observed it in hundreds of his patients.

One of the pictures Kahn flashed on the screen was a chart with colorful dots, of which he said: look, these are human genes. The yellow dots are gene numbers (named string of numbers) which have been found to cause schizophrenia. This is how science works. Autopsies and brain scans show that the brains of schizophrenics are different from those of control groups. Whether you like it or not, this is all scientifically proven. The fact that we haven't been able to isolate the cause of schizophrenia doesn't mean schizophrenia doesn't exist. Studies on identical twins prove that schizophrenia is genetic. (In as far as they have not been discredited, they prove exactly the opposite. If schizophrenia were a real, genetic disease, then identical twins would always either both or neither have it. Moreover, twins, identical or fraternal, are many times more likely to suffer prenatal placental insufficiency, premature birth, birth trauma, and other complications of pregnancy and birth than single infants, so it would be impossible to delineate genetic from other congenital factors causing whatever ails them.)

The users in the audience objected to Kahn that according to the DSM, psychoses in themselves are sufficient for a diagnosis of schizophrenia. Kahn admitted that the DSM is not a great diagnostic tool, but did not say what alternative he proposes.

Joe asked Kahn, “How can you know whether the differences found in the brains are attributable to a purported disease or to the drugs all people labeled schizophrenic take -- or took until they were taken off of them for the purpose of the study?” Kahn claimed that there are studies of schizophrenics who had never been drugged. When I pinned him down and asked to mention a specific study, he said there was one by W. Cahn, just like his own name only with a C. He told me to look for it on Google. At home I looked for it, and didn’t find it. This doesn’t necessarily mean it isn’t there. I had a copious amount of hits to follow, and many were locked behind registration requirements. The names Cahn and Kahn popped up together a lot. The two work at the same university and often publish together. Both seem to do a lot of brain imaging. One article on which both their names appear speaks of subjects who had “taken antipsychotic medication for 0 to 16 weeks…" That’s not the same as being drug free. Another article, co-authored by Kahn, claims that non-schizophrenic relatives of schizophrenics have brains that are more normal than brains of schizophrenics, but less normal than brains of people who are not related to schizophrenics. I did find a paper describing the brains of supposed schizophrenics who had never been drugged with neuroleptics, and its conclusion is that the drugs, not a purported prior condition, cause the differences.

I proposed to Kahn that Kraepelin was working during the great epidemic of viral encephalitis lethargica that swept through Europe during his day, so his findings are not applicable today. Kahn retorted that Kraepelin never found any evidence of a virus. Of course he wouldn't. In those days the equipment to isolate viruses was still being developed. Why is it all right to assume that schizophrenia is a real disease even though the cause has not been found, but not encephalitis lethargica?

Social psychiatrist Jan Foudraine, author of a book that was a best-seller in the Netherlands in 1971, was also present. Gemma Blok calls him “Messiah of the schizophrenics. He rose, supposedly to ask Kahn a question, but what he said was not addressed to Kahn at all. It was a mini-speech, apparently prepared in advance. Foudraine asserted that the question of the existence of schizophrenia touches the heart of the identity of psychiatry. If the concept of schizophrenia were to collapse, all of psychiatry would collapse with it. That would be a good thing, but it will take a cultural revolution to collapse it.

After his mini-speech, Foudraine did not sit down again, but immediately left, not awaiting Kahn’s response, which was, waving his hand dismissively, “Cultural revolution led to thirty million dead in China. And we're going to stop talking about conflicts of interest.”

Then the break was announced. Foudraine was not seen anymore. Kahn breezed by the refreshment stand already wearing his raincoat, declined to speak to anybody, and left.

During the break I purchased a video featuring four consumer-run projects.

After the break, there were many more empty seats.

The speaker after the break, as listed on the program, was former psychiatric patient Z. She did not hide behind anonymity. Her full name appeared on the program, but I’m choosing not to reveal it here anyway, as I'm not sure in what capacity she was speaking. Z had been hospitalized the first time 15 years ago. She did not clarify the circumstances leading up to it. At the time she was about to attain her doctorate, and had been optimistic about her future. In the psychiatric hospital she was told that she had a degenerative disease and that she would never be able to lead a productive life again. Perhaps she would be able to join a club and have a hobby, but gainful employment would never be attainable for her. She would have to spend the rest of her life existing from a minimal disability pension. The only therapy that was offered to her (aside from drugs, I presume) was talking about her past and her family, which she did not feel was helpful. She rejected the idea that she was disabled, and undertook to take control of her own destiny. She turned away from her old life, and set new goals for herself. With the help of her sister (who, upon my inquiry, turned out to be a clinical psychologist) she set up a schedule of concrete activities aimed at achieving those goals. In the beginning she still needed the drugs. Eventually, with her sister’s support and by sticking to the schedule, she was able to halt the pattern of repeated hospitalizations. I was astounded to hear later from Verhaegh that contrary to Van Os and Kahn, Z had been invited to talk at the symposium by Janssen-Cilag.

After Z’s presentation there wasn’t really time left, but a token was made of allowing the audience to ask questions. The debaters, of course, could not be addressed, because they had left. Verhaegh, impassioned, pointed out the link between schizophrenia and poverty. A young woman in the audience who identified herself as a (non-medical) mental health worker, said she had just completed a training course, and she felt there was a lot people could do for schizophrenics. Romme answered that of course there is a lot that can be done for people, but this has nothing to do with psychiatry. Psychiatrists have nothing to offer people in need. The other person from the audience was one of the men from Janssen-Cilag. He said that a lot of improvements have been made in the treatment of schizophrenics. Thanks to medication they now have much better lives than fifty years ago. Romme cut him short and said that it wasn’t true, and that there was no time for more questions.

I whispered to Verhaegh, “Ask again how many people here are psychiatrists.” Verhaegh lifted the microphone to his lips, and called out, “This lady needs a psychiatrist. Is there a psychiatrist in the house?” The audience, what was left of it, roared. One hand was raised. All the other psychiatrists had left before the break. They were not interested in hearing Z speak.

Bunches of flowers were handed out to Romme, Z, and the man from Janssen-Cilag who had done the most work. Janssen-Cilag probably paid for those too. Of course they had bouquets left because of Van Os and Kahn not having stayed to the end.

Although Verhaegh, Romme, and Van Os rejected the validity of the term schizophrenia, they did not say whether they question the concept of mental illness in general. Apparently Foudraine does, as he talked about collapsing psychiatry. All of the speakers neglected to acknowledge the function of psychiatric diagnoses in social control. It is linguistically ironic that social control is not instilled by social psychiatrists like Romme, Van Os, and Foudraine, but by biopsychiatrists like Kahn. Certain key terms in Kahn's presentation betrayed a truth that it is about time we face.

During his presentation, these terms crossed Kahn's lips: Kraepelin, twin studies, scientific research, heredity, degeneration (he called it negative progress), brain size. What is missing from this list? I submit that the missing concept, the one that belongs in this list but Kahn did not mention, is racial purity.

The psychiatrists who exterminated 400,000 people in psychiatric institutions during the third reich were disciples of Kraepelin, though Kraepelin didn't live to see his teachings carried out. Twin studies are inseparable from the names Francis Galton, inventor of eugenics, and joseph mengele. Scientific research was the beacon and pride of the third reich, while non-biological approaches were scorned as “Jewish.” Heredity (genes), degeneration, brain (or skull) size and shape, all were thoroughly investigated by eminent nazi psychiatrists, and the “findings” were presented in authoritative papers and lectures with the same conviction as Kahn's, although their charts were drawn on paper and chalk boards rather than laptop computers. "Whether you like it or not" to use Kahn's cliché, the fact is that biopsychiatry was born on German soil and preluded to nazism. Modern biopsychiatrists are the direct professional descendants of the eugenicists. The makers of the DSM were either German-trained themselves, or students of German-trained psychiatrists. To paraphrase Kipling, you can take psychiatry out of nazi-Germany, but you can't take nazi-Germany out of psychiatry.

We’re taught in school that the allies defeated the nazis. Were it but true. Except for the anti-Semitic part, nazi health doctrine was defeated only like the broom in Walt Disney’s film Fantasia was chopped in two by the sorcerer’s apprentice. Each of the myriad splinters rose up again to carry on as before, infinitely multiplying. Alas, no Grand Sorcerer will wake up from his nap to see what is going on and put a stop to it. The third reich was defeated, but the psychiatric doctrine that inspired and nourished it has conquered the earth. That someone with a name like Kahn or Cahn can be conned into perpetuating this pernicious doctrine illustrates just how successful the psychiatric propaganda machine is.

We who oppose the basic concepts of psychiatry are losing the propaganda battle. Of course we are grossly out-financed. But we are also failing because:

We speak in the same jargon that we disparage;
We employ the same arguments as our opponents;
We appeal to the same authority, namely science;
We apply for the same funds;
We are divided and disloyal to each other.

Verhaegh asked me to stress that his group has no ties to or sympathy for Janssen-Cilag, and reluctantly asked them to sponsor the debate only because there was no other way to finance it. The question remains: What was in it for Janssen-Cilag? Maybe they funded this symposium for the laugh?