The Triptych Convention
Two sides of psychosisattended and reported for MeTZelf by M. de Vries
The attendance was surprising, around 500 people! There had been so much interest that several days before the conference it had been necessary to close the registration and turn aspiring participants away. This had never happened before. Users in particular showed great interest in the convention. Users from as far away as Switzerland, Sweden, and even New Zealand attended.
At the entrance we al received name tags. Some of the tags bore a large green dot. I could not help but notice that the green-dotted people were the users. When I mentioned this to some of those green-dotted people they couldn’t believe it and were sure there must be some other explanation.
One of the people sitting up on the podium was Marius Romme, retired but apparently still active professor of psychiatry of the University of Maastricht who is known for his critical stand on biopsychiatry. Mary Boyle gives him an honorable mention in her book “Schizophrenia, a psychiatric delusion?”.
Note: comments below in parenthesis () are mine, not the speaker's.
Romme’s colleague, J. van Os, psychiatrist and neuropsychologist, spoke the opening words. Would the attending psychiatrists please not forget to visit the display stands by Organon and Janssen-Cilag on the first (in the US second) floor? Users were kindly asked to stay away from the stands, as Dutch law prohibits direct contact between pharmaceutical companies and people who aren’t licensed doctors.
The participating Dutch psychiatrists were promised that they would receive a certificate of attendance worth five points at the end of the convention. This relates to the Dutch law requiring doctors to update their education yearly. Participating psychiatrists from Belgium would receive their certificate in the mail.
The language spoken would be English even though most of the people attending were not native English speakers, because there were also psychiatrists from Germany and Great Britain attending.
Van Os postulated that the difference between a psychotic experience and a normal one is quantitative, not qualitative. He stressed the importance of user participation. In the year 2002 science attributes the causes of schizophrenia to a triad: drug abuse/brains/genes (the only difference I see with 150 years ago is that drug abuse has been added). Actually almost anyone can have a psychotic experience (so who is the rare lucky person who is immune to it?).
The first invited speaker was Rikus Knegtering, a psychiatrist from the Netherlands’ most northern province (Limburg being the most southern, but remember that the whole country may be no bigger than Rhode Island). The chairmen had asked him to talk about what goes on in doctors’ minds. Knegtering himself decided to expand his talk to include what goes on in the minds of the patients and family. He had made cartoons with English in the thought bubbles and Dutch subtitles. This was very much appreciated by the Dutch speakers present. The cartoons were projected onto a movie screen by a little laptop. Such technology!
The psychiatrist in his story thought things like that he was rushed, that the patient had given him too little information to go on, but that fortunately the parents had filled in enough information to make it obvious that their son was schizophrenic. I was impressed that the thoughts were reasonably well-represented, except for the following:
Knegtering struggled with English. Having prepared cartoons made it easier for him, and also for those who were struggling to understand him. His spelling errors were forgivable. One I simply have to share with you. He had the psychiatrist thinking of his patient, “Will he sue me?” which was misspelled “Will he sew me?” The Dutch expression “to sew” is analogous to the English expression “to screw”. I was the only one in the audience rude enough to laugh about it.
Poor Knegtering who was so struggling to speak in English and had prepared his talk so well was at a certain point interrupted by the chairman with the warning that he had only three minutes left. This was to happen to all of the speakers.
In the break I approached Knegtering and asked him why he had had the doctor worry about being sued. In the Netherlands it never happens, least of all to psychiatrists. No judge would take the word of a patient over that of a doctor, and no doctor would testify against another doctor, so there is no real way of holding doctors accountable the way we would expect in other professions. Knegtering admitted that indeed Dutch doctors have no such fears but he had put it in because he thought it amusing. I didn’t tell him just how amusing it truly was. Knegtering added, as though he didn’t want me to think that Dutch doctors have too little accountability, that they have to fill in increasingly many forms.
The second speaker was Peter Lehman, secretary of the ENUSP, European Network of Users and Survivors of Psychiatry.
Lehman discussed dependence on psychoactive drugs. He reminded us of the changes they make in dopamine receptors. Research on rats indicated that when after a period of neuroleptics having been administered, they were withdrawn, tardive psychoses appeared. (How can you tell that a rat is psychotic?) When neuroleptics were withdrawn abruptly from rabbits, many died. (How many?)
Neuroleptic withdrawal deliriums are indistinguishable from alcohol and barbiturate withdrawal deliriums. Research also reveals that there is no difference between “relapse” and withdrawal symptoms.The third speaker was supposed to have been a psychiatrist named Peter Vlaminck. I’ve heard that he is excellent. Unfortunately, he was home with a fever. Another speaker had been asked to take his place, but was caught in traffic and would be late. So the fourth speaker was asked to precede the third speaker.
He was a user, Ron Coleman, and he definitely stole the show. Coleman didn’t read his speech from notes. He spoke spontaneously, naturally, convincingly, and with lots and lots of humor. His T-shirt said: I hear voices and they don’t like you.
Coleman said he was used to being asked to respond to the speaker. That’s easy, all he has to do is say what rubbish it was. But since the previous speaker hadn’t arrived yet, like a good schizophrenic he would debate with himself.
In 1982 he was diagnosed schizophrenic. In 1987 the diagnosis was changed to chronic schizophrenia. In 1991 he gave up being a schizophrenic. He was able to do it thanks to the wonderful doctor Phil Thomas (more about him later). So there are good doctors, said Coleman, though not many. Thomas changed Coleman’s diagnosis to personality disorder (because apparently even a good doctor like Thomas can’t bear leaving somebody diagnosis-free) and wrote Coleman’s psychiatrist a letter. That made it possible for Coleman to start getting off of the drugs.
The DSM, said Coleman, is a comic book. The DSM-3 contains 200+ diagnoses of MI. The DSM-4 contains 390. Can you imagine what the DSM-10 will be like?
The DSM describes mental illnesses like spiritual disorder and cannabis dependency disorder. In his first year at college all of his classmates, including those who would later become psychiatrists, were mentally ill, but they didn’t know it because nobody had told them yet.
When you speak to G-d you are praying. When G-d speaks to you you are schizophrenic. (Coleman failed to identify the source of this witticism, Thomas Szasz). Psychiatrists don’t speak to G-d because they think they are G-d.Coleman first became psychotic after a period of insufficient sleep. Now he knows how to recognize the warning signs and avoid it. He also hears voices. One of the voices he hears belongs to the Catholic priest who abused him in childhood. The voice tells him that what happened to him was his (Coleman’s) fault. And he hears the voice of his deceased lover. Falling in love is the ultimate psychotic experience. His 14-yr. old stepson recently regained his use of the English language when he fell in love. For two years all he ever said to Coleman was “uh.” Now he talks to him.
Voices are not part of biology. 70% of the people who hear voices relate those voices to life events.Unfortunately, this great speaker who had us all sitting on the edges of our seats was also told that he had only three minutes left.
Meanwhile the delayed speaker had arrived. He was Peter van Harten, a psychiatrist from Heerlen not far from Roermond where the convention was held. Although I agreed with nothing that he said I must commend him for coming so well prepared at such short notice, only a few hours?
Van Harten asserted that his opinions are opposite of those of Vlaminck, the speaker he was replacing. So we should just reverse everything he says in our minds.
An ideal concept of illness must have valid criteria and be reliable. It used to be that different psychiatrists would differently diagnose the same patient. Now thanks to the clearly described criteria in the DSM this is no longer the case.He projected an image on the screen that was reported to have been drawn by a psychotic man. It was a well-drawn portrait. The forehead was covered by an open mouth. This patient claimed that other people could hear his thoughts.
There are 100,000 schizophrenics in the Netherlands.Next he projected two brain scans onto the screen. They belonged to monozygotic twins, he said. In the right-hand picture we could see loss of brain. This was the schizophrenic brother. (Nowadays we know that not “schizophrenia” but neuroleptic drugs cause the difference. Besides, if the twins were monozygotic and schizophrenia was genetic as psychiatrists claim, both images would have been identical.)
Illness has three possible outcomes. Either the patient recovers, he becomes disabled, or he dies. This is also true for mental illness.Next four images were projected onto the screen. They were supposedly all drawn by the same patient at different times. The first was drawn at the beginning of the psychotic period, and was a realistically and well-drawn orange cat. The successive drawings were the same cat but more chaotically drawn, representing the patient’s advancing confusion as he became more psychotic. The last two drawings were not recognizable as a cat. (I don’t believe that the successive drawings were made by the patient, if even the first one was. They were too accurate in relation to the first drawing. It is unlikely even that the patient would have had access to exactly the same colored crayons. I believe the last three drawings were the same drawing as the first but intentionally distorted by a computer. Even if the drawings were real, that still would only demonstrate the damage to the person’s brain from neuroleptics, not any supposed illness.)
In spite of my suspecting his slides of being fraudulent, I found it rude that this impromptu speaker was also interrupted for the three-minute warning.
Van Harten closed his talk with the remark that research into mental illness is promising.
During the first coffee break I approached the registration desk. It was manned by the lady who had corresponded with me about my registration. She had repeatedly confused me, Mira de Vries, with one of the scheduled speakers, Maarten deVries (last name written without a space). De Vries is an extremely common last name here, like Smith or Jones in English-speaking countries. Maarten deVries is also employed by the University of Maastricht and is (or was) chairman of the WFMH, initials that are apparently supposed to remind us of the WNF. In fact the World Federation for Mental Health is a joint venture of the pharmaceutical companies and seems to have as its goal: convincing governments of poor countries that their citizens are mentally ill, and lobbying them to spend their money on psychoactive drugs instead of food, clean water, shelter, and education. They claim to champion human rights in psychiatry, by which they mean the right to be diagnosed and drugged accordingly.
Half a year ago I wrote deVries a polite letter inquiring about WFMH activities and asking him whether he could refer me to a web site. He never answered it. So now I brought a copy along to hand him personally. However, I was told that he had canceled his participation. No reason was given. Perhaps he objected to the presence of users?
After the break the chairmen from Maastricht traded places with their colleagues from Aachen, who were to chair the next part of the convention. They were no less strict about the time limit.
The fifth speaker was Richard Bentall, Professor of Psychology at the University of Manchester, England. The title of his presentation was: Bad theories are bad for mental health.
He started by projecting a picture of a beautiful, castle-like building. Behind the fairy-tale façade of this supposed asylum for the insane the most terrible cruelties transpired.
Psychiatrists have always used violence against their patients. First there were the insulin comas, from which many victims died. Then there were the lobotomies (for which their inventor won a Nobel prize!).(This is probably not true. It was claimed by psychiatrists on trial at Neurenberg.)
Instead they were sent to concentration camps where they were nevertheless exterminated.Bentall wasn’t yet a quarter of the way through the presentation he had prepared when the three-minute signal was sounded.. A shame.
In the break I asked him whether he might be willing to consider political activism. He said he had been thinking about it. The problem was that although he is a Ph.D., he is not a medical psychiatrist but rather a psychologist. Politicians only believe in doctors, he said.
The sixth speaker was Thomas Bock, a psychiatrist from Hamburg. He joked that although he had been trying to learn the language of psychosis for decades, he had forgotten to learn English.
Compliance is a ritual of subordination. The first step to recovery is not believing your doctor. Psychoses are similar to dreams, the same mechanism causes them. Crises can not be prevented, they must be supported.This speaker spoke no shorter than the others so I must have been lax on taking notes.
The seventh speaker was L. de Haan from the adolescent psychiatry ward at the University of Amsterdam hospital. His apparently obligatory opening joke was that although the hotel we were in belongs to Van der Valk, the roof was strong (recently the roof of a different Van der Valk hotel caved in).
I don’t know what schizophrenia is, said De Haan.
Recovery from what? Recovery is a term from the consumer movement. Psychiatrists speak of management. Who defines recovery? It appears that schizophrenics sometimes recover after decades of illness, which is hopeful. Patients who seek medical assistance do better than those who avoid it.(Yeah, sure.)
During the break I asked De Haan since he doesn’t know what schizophrenia is, does he prescribe neuroleptics? Yes. What if a teen-ager wants to be treated without drugs? Does De Haan agree, or evict him, or force drug him? At first he hemmed and hawed and beat around the bush. After I pressured him he said that in theory he might treat somebody who didn’t want to take the drugs. It was clear that in reality he drugs every teenager he gets his hands on.
The last speaker was again a user, Wilma Boevink who is employed by the Trimbos Institute that purports to do research into psychiatry and drug addiction. She spoke very well and her English was better than that of the Dutch and German psychiatrists. I was secretly proud of her. The complete text of her speech is available here.
Recovery, she said, is not about cure. Psychiatry is not about cure. The patient must learn not to ascribe all of life’s irritations to mental illness. A diagnosis means that all questions are automatically answered.
The psychiatrists’ story is not her story. According to the psychiatrists she was hospitalized because of a psychotic episode, and thanks to treatment she went into remission. Her own story is that she was unable to handle being battered by her husband, needed a place of refuge, and had to learn how to deal with what was going on in her life.
When released from the psychiatric hospital she had to learn to live with having been in it. Psychiatric institutions are reservoirs of human suffering. People who are feeling terrible are herded together in depressing and degrading institutions and are expected to feel better. It is easier to adjust to institutionalization than to adjust to not being institutionalized anymore.
During the break I asked Boevink whether the Trimbos Institute is generally sympathetic to our cause. This is unfortunately not so, she said.
After those speakers was lunch. Usually the caterers provide trays of fresh fruit, but there were none here, so none of the food was remotely suitable for me. That was just as well, as there was but little time for lunch, and I had a different plan in mind.
When I registered for the convention, I was asked whether I’m a user or a professional. I explained that I was representing the Association for Medical and Therapeutic Self-Determination in the Netherlands (MeTZelf). She said in that case I would have to pay. Since I had paid, I received a name tag … without a green dot! Oh what you can accomplish with €75 (about $75, which was the same as the fee for students though I didn’t see any students there).
So, naughtily, I ascended the stairs to the display.
Already on the way up there were plastic shopping bags lying in waiting to be filled with goodies. They bore a colorful design especially created for Organon by a Dutch artist. The name “Organon Netherlands” was sprawled conspicuously across the top. I might add that I saw only users carrying the bags. No psychiatrist would be caught dead with something like that among users. So I figured I’d better resist the temptation.
The first display was piled high with little knickknacks – colorful notepads, lined writing paper, two different kinds of pens, pill boxes, and paper weights with something orange in them which may have represented brains (or that cat?). All had the word “Risperdal” written in huge letters where you couldn’t possibly miss it. I decided not to seem greedy, besides, as I had resisted taking a shopping bag, I had nowhere to put it all.
As I moved on to the next display, a beautiful young blonde woman approached me and introduced herself in English though her accent was unmistakably Dutch. I decided to stay with the English. As I speak English with an American accent, it might help disguise that I'm not really a psychiatrist. Dutch people think that all Americans, including American doctors, are crazy, which might account for any slips.
Upon my question, Blondie said that she represented both Organon and Janssen-Cilag who had jointly presented the display in spite of presumably being competitors on the pharmaceutical market. I wondered whether she was a licensed physician, and if not, why was she allowed to see what is forbidden to the rest of us lay people?
Blondie handed me a blue box and asked me, “Are you familiar with this already? It’s Modiodal for the treatment of narcolepsy. In the US it’s marketed as Provigil”. Narcolepsy? I asked surprised. How many sufferers of narcolepsy can there be in the Netherlands? I had just blown my cover, but she didn’t seem to notice. She answered, “1200 to 1600. You can also prescribe it off-label for all sorts of tiredness or drowsiness, or as an add-on to an antidepressant. We’re only not allowed to promote it for that.” Did I see her wink?
What about using it to treat the side-effects of neuroleptics, I asked. “Certainly,” she nodded, “off-label.” And ADHD? “Yes, very appropriate, off-label.” The fact that drugs for ADHD are prescribed to growing children is of course not important, off-label.
I thought of asking her about the side effects of the drug, but feared compromising my act too much. What psychiatrist cares about side-effects?
I slid open the box of pills for narcolepsy (an extremely rare condition which certainly doesn’t pay to spend an advertising campaign on) and exclaimed, “Oh my, how big! My patients all have problems swallowing. I hope these dissolve in water?” Blondie said that because there were users present they had filled the box with peppermints. Later, at home, I studied the box and saw that it was clearly marked as “a gift of candy.” This is probably standard practice, and Blondie would surely have been suspicious of me if I hadn’t spoken with an American accent. The mints, by the way, I later gave away to a junkie at the train station, though he surely would have preferred the pills against narcolepsy, off-label, of course!
At the last display Blondie waved a box of Remeron under my nose. Remeron claims to be an antidepressant that isn’t an SSRI (no, it’s a tricyclic). It was introduced in the Netherlands in 1994. The official government advisory agency tells doctors that it is an antidepressant of last choice because of its side-effects, weight gain and drowsiness, which are worse than with other antidepressants. Other authoritative literature (written by doctors) suggests that it should never be prescribed at all, and refers to suspicions that Organon makes fraudulent claims about the drug and hushed-up research indicating that Remeron is less effective than imipramine, an old tricyclic antidepressant.
There was a brochure for patients on the table (but there was to be no direct contact between drug company and patient?) which I regret not having taken to tell you what lies it contains. At that moment I was more interested in the Psychotropic Drug Directory 2002 which would be a welcome addition to my collection. Blondie said I could take it. To not seem too disinterested, I asked her whether she could provide me with more professional information about Remeron? “Only in Dutch,” she said. No problem, I slipped, blowing my cover, and I quickly ran back down the stairs with my loot.
During the whole break no psychiatrist had come to look at the displays. Had any been there alll day? It wouldn’t surprise me if there were no 11th Triptych convention.
It turned out that Blondie, according to the business card she gave me, is a “medical adviser.” She used the title “Dr.” on her business card even though in the Netherlands that title is legally reserved for Ph.D.s. Perhaps she had a Ph.D in another field (though what Ph.D. would take a job as a sales-rep at a pharmaceutical company?) or she had graduated from med school and was using the title improperly. And people lobby our government to spend more money on training physicians because there’s such a shortage!
After lunch the four workshops were held simultaneously:
But that wasn’t the end of my surprise. A group of psychiatrists and been sitting there whispering among themselves. Shortly after the workshop began, they rose and left it. There were now except for the speakers only a couple of psychiatrists left. The rest of the participants were users! The psychiatrists couldn’t go home as they had to wait for their certificates of participation, so they sat in the lounge having coffee, where I saw them at the end of the workshop. After that I didn’t see them anymore, so maybe they managed to get their certificates early anyway. Now you know the value of the obligatory educational up-dates.
At the workshop we again had speakers. The first was a Belgium psychiatrist with little to say, but he did a good job chairing the discussion.
The next speaker was Phil Thomas, the British psychiatrist that Ron Coleman (the one who spoke so well) had praised. Thomas struck me as being a doll. Here is as much of his speech as I managed to jot down:
I come from a part of the city where 55% of the population is of not-western descent. I don’t believe in the existence of schizophrenia but I’ll use the term, as well as the term patient, because that’s what people are used to hearing. I am not a psychopharmacologist. Medication is the key problem. Nowadays we know that what mainstream psychiatrists call relapse is in fact not caused by some mysterious illness but by damage from the medication. We call that super-sensitivity psychosis or tardive psychosis. What really happens is that the supposedly schizophrenic behavior is caused by the withdrawal syndrome.After that he gave a rather technical explanation of the five brain systems that have dopamine receptors. One is the limbic system (source of emotions, ambition, assertiveness, etc.) Research has indicated that neuroleptics cause dopamine receptors to proliferate in all those systems. That’s what causes tardive dyskinesia, tardive dystonia, tardive akathisia, and it is reasonable to assume that it also causes tardive psychosis, he posited.
Affective disorder is caused by pharmacological stress factors.Yet Thomas said that he prescribes neuroleptics himself, even in new cases, although he mainly engages in helping people get off them or reduce their doses.
He expressed anger at the excessive power that psychiatrists have (given to them by our governments) and at the high profits of the drug companies (as though it weren’t the doctors themselves who tucked those profits into drug company pockets).
The drug companies claim that their drugs are so expensive because they invest in research, he said.
That’s rubbish. They invest only 12% of their profits in research (and receive subsidies from their governments and collections). The largest part of their budgets goes to marketing. Nowadays relatively few new drugs are developed because it pays the drug companies more to invest in better marketing of the old drugs (like Remeron).After Thomas, Peter Lehman spoke again. Among other things he told us that his book about withdrawing from psychoactive drugs will soon be published in English. When I mentioned penfluridol, he said it has been banned in most of Europe since 1980 because it was found to be carcinogenic (which would be the least of your problems if you’re on it). This surprised me because I have so many authoritative books on the subject and none mention this.
After Lehman another user spoke, Jan Verhaegh, whom I know from the clients’ union (a euphemism for psychiatric consumers). He in particular expressed the opinion that what is lacking is that we see matters in context. Symptoms should not be seen as separate entities but should be contemplated in the context of what’s going on the person’s life. Also the use of drugs should be seen in the context of circumstances, like how they are working and how the person taking them feels about them, he said.
I forgot who it was that related about a precedent: a psychiatric hospital in the Netherlands that is sponsored by Pfizer, manufacturer of Zoloft. The government tried to block the sponsorship but it couldn’t.
Like I said before, many psychiatrists had already walked out of the workshop, although a couple stayed and bravely participated in the discussion. They mainly complained about the lack of information from the drug companies (because the drug companies don’t know the answers either?)
Most of the people who participated in the discussion were users. One said that when a doctor prescribes drugs, the patient feels that his problems are taken seriously. Another said that when she was in crisis, she mainly needed an arm around her shoulders and understanding, which was the last thing available at the mental hospital. Somebody asked why it took psychiatrists so long to recognize the existence or tardive psychosis when users have known about it for decades.
After the workshop we returned to the auditorium for the closing speeches. Each of the workshop chairmen was asked to briefly report on what was discussed in the workshops.
Meanwhile there had been grumbling about the green dots, possibly because I had been agitating about them. We were given an apology, and it was explained that the reason it had been necessary was because of the Dutch law forbidding users to see the displays. “Now you know what it’s like to be labeled” he joked, which missed the mark because the ones with the green dots already knew. Unfortunately he could not think of any alternative solution. That the drug companies not have the displays was out of the question as they don’t sponsor conventions for nothing, and without their sponsorship there can be no conventions.
Aside from that matter, we were invited to make suggestions for the next Triptych. Jan Verhaegh from the clients’ union jokingly suggested that next time we hold it in the Russian language. Many people had found the English trying. Somebody complained about the speakers having too little time. We were told that the reason for the strict discipline was that if we didn’t vacate the premises exactly at five in the evening, the hotel would charge extra. Somebody else said that pro-drug psychiatrists should have been invited. They were, of course, we were told, but perhaps there hadn’t been enough arm-twisting (or they preferred to walk out?). Coleman pointed out the need for these ideas to be carried back into the mainstream psychiatric community, to which Dr. Thomas responded that indeed, perhaps dissident psychiatrists should convene and discuss how to do that (which I loudly applauded). I asked why the media hadn’t been invited. I was told that they had, but they didn’t come. The subject does not have the media's or public’s interest.
As usual, large parts of the population of psychiatric victims received not a single mention. They are the people whom even psychiatrists don’t dare claim are schizophrenic: people in homes for the elderly, the intellectually challenged, autistics, problem children, and physically handicapped people who cannot lead independent lives. Wherever people need care, neuroleptics are widely used, which in itself illustrates the absurdity of the dopamine theory of schizophrenia
Aside from learning about dissident psychiatrists in Europe this convention taught me nothing new. I had not yet heard the term “tardive psychosis” but I’ve known it exists for ages. If I can know it, anybody can know it, including mainstream psychiatrists. Whoever doesn’t know apparently doesn’t want to know, perhaps like the psychiatrists who walked out of the workshop.
I was happy to learn that now also in Europe there is a small but serious group of dissident psychiatrists. However, the conclusion that in my opinion they should draw, they don’t. If mental illness doesn’t exist and mental treatments do more harm than good, psychiatry as a medical specialty doesn’t have a leg to stand on. The users said it over and over: what is needed is exactly not the distanced attitude of the professional but love and practical assistance, which the doctor cannot provide.
On July 15, 2003, I received the invitation to the 11th. Unsurprisingly, no users were invited this time. None of the speakers from the 10th were listed to be at the 11th. I didn't recognize the names of any of the speakers. The sponsors were the same pharmaceutical companies, of course.
The subject of the 11th Triptych conference was "Assertive Community Treatment." That means how to increase demand for psychiatry, and, if I read correctly between the lines, how to make clients and family think they are being assertive while in fact agreeing to everything the psychiatrist says. As I said, no clients and family, assertive or otherwise, were invited to participate in this discussion.
Fortunately, the date was inconvenient for me. That spared me the decision whether or not to go crash their party. See "Skills in Psychiatry" symposium.