Dutch experts say schizophrenia does not exist, but psychosis does, and is very treatable

Machine translation from http://www.nrc.nl/handelsblad/van/2015/maart/07/laten-we-de-diagnose-schizofrenie-vergeten-1472619

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Let’s forget the diagnosis of schizophrenia

Schizophrenia does not exist. And so we should stop to make that diagnosis. Psychosis exists. And fortunately we can do something about it, writing

Jim van Os and five others.

March 7, 2015

Jim van Os is the professor in psychiatry from Maastricht, member of the DSM-5 schizophrenia sub-committee and co-founder of schizofreniebestaatniet.nl. Wilma Boevink is a Senior Researcher at the Trimbos Institute and co-founder of the site. Rutger Jan van der Gaag is chairman of the Royal Dutch Medical Association Doctors Federation. Aartjan Beekman is chairman of the Dutch Association for Psychiatry. Robert Vermeiren is Chairman Department of Child and Adolescent Psychiatry, Dutch Psychiatric Association. Rutger Engels is CEO Trimbos Institute.

Schizophrenia does not exist. Yes, you read that right. Schizophrenia, wrongly known as the disease of the "split mind" does not exist. Psychosis exists. About three percent of people suffer from it, as an adolescent or young adult. Someone who is psychotic, taking under the influence of personal emotions reality so distorted that other people no longer understand him or her.

Misunderstanding that we often see in other mental disorders, depression or anxiety disorders for example. Only, there are therapists ready to help. People with psychosis are considered hopeless cases. And that’s baloney. Because research has shown just that people with psychosis usually get back on top – with the right help. That they do not get, for three reasons.

Firstly, we have so much pessimism about the future of people with psychosis palmed that hope and recovery is not automatic central to the treatment. Secondly treatments that demonstrably works, such intensive counseling to training or work, not sufficient. And third, there is the current "diagnosis-prescription-symptom list” system of market forces in healthcare no room for the psychological process of recovery.

Because people with psychosis have too little help, they remain needlessly hanging in an empty existence, deprived of education and work until they die a premature death. Early yes, because life takes a fifth less than that of the average American. A crude form of social injustice.

To stop that, and people with psychosis, their environment and society to give a realistic picture, the website schizofreniebestaatniet.nl was created. We want to create the term schizophrenia in five years and eliminate room for the following principles for treatment and support of people with psychosis:

1 There is scientifically make a clear distinction between psychosis and other experiences. Psychosis is simply to treat.

2 More than 15 percent of adolescents and young adults have psychotic symptoms during normal development. They hear voices or paranoid. In 80 percent of them disappear these symptoms naturally.

3 About 3.5 percent of people have so much experience psychotic symptoms they should seek help. Their diagnosis is psychosis sensitivity: their symptoms are part of a psychotic syndrome that looks different in each of them.

4 The course of psychosis sensitivity is variable and unpredictable. Only 20 percent of people who suffer from it have a poor prognosis; Most recover or learn to live with it.

With the right help, people with psychosis usually bounce back

5 A psychotic experience is often a reaction to trauma, adversity, disappointment, humiliation or discrimination – the burden is too heavy for the individual.

The dominant view that psychosis is a manifestation of an underlying biomedical brain disease (schizophrenia) is scientifically incorrect. That view, however, contributes to negative expectations about the recovery and should not be central in psychoeducation.

6 Psychiatry shares psychosis sensitivity in all ‘schizo-diagnoses (schizophrenia, schizoaffective, schizophreniform, etc). But everyone has a different mix of symptoms, and does not fit well in a diagnostic box.

7 People with psychotic syndrome should receive from the first moment of hope and perspective. Recovery is a psychological process. People must learn to adapt to their psychosis sensitivity, with support of skilled experts and, where necessary, of doctors and therapists to support that recovery.

8 Anyone with a psychosis must from the outset have access to an expert by experience, like no other can help in providing hope and perspective.

9 Return to the home environment, training and work at the forefront of the treatment plan. Even if there are residual symptoms, people can pick up the thread. The current practice to wait for complete "cure" is counterproductive.

10 Everyone who comes with psychosis in mental health care, should be encouraged to talk about it. The contents of psychosis should be taken seriously and be considered significant, for it is often the key underlying problems.

11 Anyone who has suffered from psychosis should be offered psychotherapy by a therapist with experience in psychosis.

12 Antipsychotic drugs may be necessary to dampen violent experiences, but they can not correct underlying biological abnormality. An antipsychotic does not heal.

Schizophrenia does not exist. That’s a good thing. Because of psychosis, we fortunately do very much.

A version of this article appeared on Saturday, March 7th, 2015 in NRC Handelsblad.
This article is copyright of NRC Media BV, respectively, of the original author.

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Best Wishes
Philip Benjamin
MHN BEd MMind&Soc
Chair, ISPS Australia

ISPS Australia Conference, 28-29 May 2015 at La Trobe University
New Paradigms and Therapies for Psychosis: The Experience of Listening

6 responses to “Dutch experts say schizophrenia does not exist, but psychosis does, and is very treatable

  1. Margreet de Pater, of the International Society for Psychological and Social Approaches to Psychosis (ISPS), has already made a rough (human) translation of this text from the NRC Handelsblad newspaper published last weekend. She is arranging for a fully bilingual member of ISPS to make a thorough translation.
    ISPS is about to have its 19th International Congress in New York on the theme of Dialogue. It is possible the biological and socio-psychological wings of current psychiatry may make some headway towards a rapprochement at this Congress.
    Jim van Os and Wilma Boevink represent the psychological and social wing. The previous fortnight on 23 February the same (quality) newspaper published an equally impressive article by a member of the biological wing, Iris Sommer, professor of psychiatry at Utrecht University Medical Centre. Her theme was hearing voices.
    There are already seeds of ‘getting closer together’ in these two forward-looking articles. Noteworthy is that they both pay their respects to the lived-experience patient movement.

  2. http://digitaleeditie.nrc.nl/digitaleeditie/NH/2015/2/20150313_/1 J6 / artide4_image.html

    14-3-2015 NRC Digital edition | NRC Handelsblad newspaper
    Scrapping schizophrenia as a diagnosis is anti-psychiatry from the ’70s:
    Doctors who say schizophrenia does not exist are ignoring biological evidence, according to
    Iris Sommer and four other psychiatrists.

    Schizophrenia does not exist and the Maagdenhuis (Amsterdam University HQ) is once again occupied by students. The seventies of the last century appear to have come back. According to Jim van Os and a few colleagues we should abandon the diagnosis of schizophrenia (NRC, Opinion, March 7) and then the lives of patients with severe psychotic disorders will be better. Noble endeavor, but it is not so simple.
    Schizophrenia is the globally accepted diagnosis for a group of serious psychiatric disorders consisting of a combination of delusions, hallucinations, confusion, cognitive disorders, social withdrawal and emotional flattening. The diagnosis is established only when these symptoms are prominent for at least six months and furthermore seriously impair daily functioning. Schizophrenia affects approximately 0.5 – 1.0 percent of the population and entails more extra costs for admissions and treatment than any other disorder. It would be fantastic if the symptoms would disappear were the diagnosis to be scrapped. Unfortunately, the reality is not so utopian.
    Van Os and colleagues want to abolish the diagnosis of schizophrenia and moreover they are talking about 3.5 percent of the population having psychotic symptoms. Compare it with cardiologists who write an article in which they argue that heart failure does not exist and thereafter focus on people who only have high blood pressure.
    Psychotic symptoms (hallucinations and delusions) make up only a part of the symptoms associated with schizophrenia. Schizophrenia is considerably more serious than psychosis because the cognitive, social and emotional capabilities of these patients are more affected than with people who only have a psychosis sensitivity/susceptibility. Van Os wants the situation of people with mild forms of psychosis to be regarded as normative and thereby to downplay the more serious forms.
    Negating schizophrenia as a disorder is moreover not new. Van Os and others are regurgitating the old, politically motivated but long ago scientifically refuted arguments from the ’70s of the last century. They breathe new life into the completely outdated anti-psychiatry whereby psychiatrists were blamed for the inability of patients to take their part in society.
    The inability of some patients with schizophrenia to keep up their societal roles is not caused by a predicted prognosis, but is, unfortunately, inherent in the symptoms, especially the social and cognitive deficits and the limitations of our treatment options. Meanwhile there are countless scientific articles which, on the basis of data from hundreds of thousands of people, demonstrate that the concept of schizophrenia has a biological basis that can be objectively measured, with its own elaboration. It is linked with specific early abnormalities such as: a smaller circumference of the head, problems at school and limitations in social functioning that are evident long before the first contact with the mental health services takes place. Indeed, in schizophrenia the first symptoms of dysfunction occur on average ten years prior to the psychosis. Finally, last year an article appeared in Nature – with Van Os as co-author – in which 108 genes were identified that increase the risk of schizophrenia. Are these then genes that increase the chance of a non-existing condition? That there are also environmental factors that interact with these biological factors, no-one will deny, and has been well known for years.
    At the same time, we wholeheartedly support the call for greater understanding and more adequate treatment for people with psychosis. Providing perspective and supporting social roles are essential to prevent loneliness and demotivation. We recognize the historical inaccuracy of the term “schizophrenia” (split mind) that, like many terms in medicine, in the course of time have acquired an adapted meaning beyond the original. However, the belief that the condition that we – unfortunately – have already for a century called schizophrenia does not exist, is a misconception for which there is insufficient scientific evidence. Apart from the scientific blind spots, propositions are posited that do not correspond to reality. Such as the suggestion that in the current treatment for schizophrenia recovery plays no role, patient-experts have no place, psychological treatments are not applied, and resumption of work and activities are not a treatment goal. Are the authors not abreast of current treatment guidelines in which these elements are included, of the existence of FACT teams that work with people with lived experience? A plea for a new élan in research and clinical practice for schizophrenia is in place. However, prejudices packaged as facts is quite another matter. The opinion piece does current scientific knowledge and the effective treatments now being given in psychiatry serious injustice. Discussion is good, misleading is not. Patients with major psychotic disorders will not benefit from denial of their problems and unfounded optimism. It is much more important to work on more and better research for the development of new treatments.
    René Kahn is professor of psychiatry, University Medical Centre (UMC) Utrecht; Iris Sommer is professor of psychotic disorders, UMC Utrecht; Damiaan Denys is professor of psychiatry and department head, Amsterdam Medical Centre; Robert Schoevers is professor of psychiatry and department head, UMC Groningen; André Aleman is professor of cognitive neuro-psychiatry, UMC Groningen and State University of Groningen.
    (Translated by Bill George)

    • An apology for Anoiksis
      There are two camps or wings to psychiatry in the Netherlands on the go. One is the biological or medical wing. The other is the psychosocial wing. Once again we have here the conflict between those who support nature and those who support nurture.
      According to Simon Collin’s Dictionary of Science and Technology (A & C Black, 2nd edition, 2007) Biology is the study of living organisms. Psychology is the study of human behaviour and mental processes. Psychiatry is a branch of medicine concerned with the diagnosis and treatment of mental disorders. As I see it therefore psychology and psychiatry are subsumed under biology.
      René Kahn and Iris Sommer are examples of professors of psychiatry who belong to the biological wing. Jim van Os, epidemiologist supreme, is an example of a professor of psychiatry who belongs to the psychosocial wing. Wilma Boevink is a lived-experience expert with a very talented literary style like the American Pat Deegan. They tend to protest and speak for those who are dissatisfied because of psychiatry’s weaknesses and failures. (Sometimes psychiatric treatment is frankly iatrogenic, but then even cutting people up by surgical procedures is not always without its dangers.)
      These two camps or wings tend to be rivals and set themselves up in opposition. Irritation and a measure of recrimination can ensue. Strictly speaking this conflict is unnecessary because the two aspects are the two sides of the same coin. They are complementary rather than conflicting. On the other hand, what would debate be without a bit of passion and fire? Think of the politicians. Human beings, being what they are, find the way politicians get and each other on television entertaining rather than distressing. Broadsheets and gossip magazines are more popular than The Times. The News of the World went too far. But even The Times is now not averse to a bit of gossip.
      Anoiksis, the Dutch society for people with a sensitivity/susceptibility/vulnerability for psychosis, stands aside from the extremes of controversy over psychiatry. We stand four-square in the middle, if you will pardon the mixed metaphor. We deplore the philosophical reductionism that speaks of mental functions only in terms of neural circuits and dopamine. It does little harm but it is ugly. We note that the finding of 108 genes that influence the etiology of schizophrenia (pardon the word) puts paid to the belief that there is just one genetic aberration responsible. (Contrast Down’s syndrome.) We rejoice that the two wings of psychiatry are finding more and more common ground, thus giving a more complete, holistic picture as science advances.
      We are pleased that greater emphasis is at last being put on the negative and cognitive symptoms that are the bane of our existence as patients with “schizophrenia”. The question arises, however, whether the concept of psychosis does not itself involve the notions of negative and cognitive symptoms. And whether it is proper to call someone who has hallucinations without them making the person ill “psychotic”. Our home page http://www.psychosegevoelig.nl is intended to be all-inclusive. We do not protest when we are referred to as patients.
      Bill George
      Anoiksis Foreign Affairs correspondent
      The Netherlands

  3. You do not abolish concepts

    Jaap van der Stel

    It is hard to imagine a medical discipline in which disagreement reigns supreme more than in psychiatry. Fascinating for historians, and philosophers always feel attracted to the sector, but whether patients and their families get much benefit from it is the question. There is no sharp definition of the subject matter of psychiatry; and there is an unstoppable debate about what is or is not a divergent mental development deserving of the name ‘disorder’. For example, the Dutch professor Jim van Os, who has numerous scientific publications about schizophrenia to his name, has suddenly turned to the public domain with the proposition that schizophrenia does not exist. That four professors of psychiatry felt compelled, through a letter to the NRC Handelsblad newspaper (13-3-15), to oppose the move, goes without saying. Diagnostic categories are not to be abolished by means of a public debate.

    Van Os and his supporters have a point of course when they turn against entrenched attitudes and highlight the potential for recovery. But anyone who follows the literature knows that schizophrenia has for a long time not been seen as a single condition in which only genetic factors are involved and from which hope of recovery would be an illusion. Perhaps not all colleagues keep up with the professional journals, but that’s another problem. Viewed from a distance – I’m not a psychiatrist – I find it strange how leaders in the field take their cue from each other via the media.

    Besides, cancer does not exist either. It is, like schizophrenia, a cluster or spectrum of a range of different conditions. The word cancer, like schizophrenia, is perhaps out of date. Oncologists do not make problems about it, and are at the forefront of innovative classification and personalized medicine. The concept of cancer has for a long time been much further developed than when Hippocrates compared the disease to a lobster. But patients with a form of cancer have much more hope after they have been given a diagnosis. Not because the word cancer has been abolished, but by improving the chances of recovery; and so the underlying concept has also been regularly adjusted.

    I am afraid that as a result of this discussion mental health care is again going to be assailed and ridiculed and that the budgets for research into schizophrenia, or whatever it is called, will dwindle even more. I was moved by a reaction that I received via Twitter of a father who had visited his, in his own words, “severely schizophrenic” son twice a week for thirty years. He was irritated by this discussion; his son stands to gain nothing from it, of course.

    I’m all for public debate. However, through the way Van Os and his supporters have cranked up the discussion, it quickly takes on an ideological colour. You are for or against Jim, for or against the term schizophrenia, and so on. Ideology distorts perception and filters information. That is disastrous for scientific debate.

    I foresee a recurrence of the taking up of positions: a discipline that every time disintegrates into ‘factions’ that are all true in their sub-domains but evidently find it difficult to achieve an integrated vision. In such a situation it seems sensible that you should throw the cat among the pigeons and involve the media. I very much wonder.

    More generally, it is sensible to clearly distinguish the term schizophrenia, the concept that we have of it, from the phenomenon, the people with a disorder and symptoms that have long been clustered together with the term schizophrenia. You can change the term, but that has only a temporary effect, and the term Van Os proposes, ‘psychosis susceptibility’, is even misleading. It puts a unilateral emphasis on what are till now the most treatable of the symptoms. You can change the concept, but when I look at the literature, that has been underway internationally for a long time. And finally, you can change the phenomenon. The focus should be on this: more timely detection, attention to mental functions and social functioning rather than on symptoms, and search for more effective therapies.

    Oncologists have left the term cancer largely alone for more than two thousand years. They have already achieved great successes, especially by taking action at an earlier stage, whereby the chances of survival are increased. And in parallel to that, the concept of cancer has evolved. Psychiatrists can learn from this by (1) conducting far more clinical research (at the expense of epidemiological studies); (2) setting the focus on young people, because most mental illnesses arise and manifest themselves between 0 and 25 years of age (less of an accent on long-term care; and (3) working together much more closely with family and clients. But concepts, you do not abolish them: you develop them through innovative practice.
    (Translated by Bill George)

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