This blog entry comes from a website I subscribe to. I think the discussion is worth re-blogging
NYAPRS Note: Brought to us by a group of Dutch medical and non-medical providers, advocates, and consumers is the below debate that lays out the “problem” of schizophrenia. The issues range from language, positive versus negative pathology, errors in research and the methodology of educating psychiatrists, and experiences of individuals who experience psychosis. Does schizophrenia exist? And, if not, what do we do about the experience of psychosis?
Schizophrenia, Does it Exist or Not?
Schizophrenie Best Aat Niet; Davy de Geeter (translation)
No, we don’t deny the suffering of patients and their family members. No, we’re not obsessed with the academic question whether or not the construct of Schizophrenia exists.
We’re trying to do something about the wall of negative expectations that patients run their heads against on a daily basis in all aspects of their lives. These negative expectations are being fed by the constant push of the biological –and unjustly pessimistic– concept of psychosis. This pessimism is so incorporated in the current belief system that it won’t just disappear on its own.
Only in Japan they’ve already succeeded. After battling it for ten years. Over there, they’re sensitive to these things. In Japanese culture the dispiriting diagnosis of schizophrenia is seen as a hidden assignment to commit suicide.
Of course it’s not just the name Schizophrenia that does all this
It concerns the way that it’s self-evident that the term is unjustly linked to negativity and pessimism. Scientifically seen there’s a broad spectrum of psychosis. People who have been given the diagnosis schizophrenia are just a minority in that spectrum. Out of this minority there’s a group of people who don’t recover and who are under constant suffering.
From the recovery oriented movement, we know, that when medical recovery isn’t possible, there is a possibility to change someone’s perspective on it. In such a way that people despite having their constant severe limitations, have a way to experience their life in a meaningful way. This is called personal recovery.
And for that to happen, we need a culture shock. It’s only through this, that we can reach a culture of hope and belief in change. That’s what schizofreniebestaatniet.nl really is about.
Despite the recovery movements 25 years of activeness, there’s still a great lack of knowledge and the principals of personal recovery aren’t being understood like they should. Especially the difference between a medical recovery (less symptoms) and personal recovery (experiencing a meaningful existence) is something that’s very confusing for biological psychiatry
Schizophrenia: the wall of pessimism on which patients hit their heads
Take this true story of a person with a psychotic disorder. She had been diagnosed with practically every diagnosis of psychotic disorder, including schizophrenia. Her family remarked that there were rather negative expectations and pessimism in the way the treatment was communicated and executed. They noted that part of this pessimism seemed to be embedded within the diagnosis schizophrenia.
A psychiatrist spoke to the family regarding her ‘narcissistic’ wish to apply for a job (that’s just plainly not possible, no?).
When years later she eventually got a job, her boss tried to fire her after a week. He had discovered that she had been given a schizo-diagnosis in the past.
A different psychiatrist told her gynaecologist that she shouldn’t be allowed an in vitro fertilisation. You guessed it: because of her diagnosis.
A divorce was just around the corner
Of course this story was also filled with fantastic contacts with inspired psychiatrists, psychologists and nurses. But they also have to work in a culture where the concept of schizophrenia is inherently pessimistic. A shroud of gloom and low expectations. This pessimism seems infectious. It’s also observed in the offices of politicians, policy makers and insurance companies. And may lead thinking like: why are we investing money in this chronical set of people that can’t recover anyway
Is the pessimism surrounding the diagnosis schizophrenia justified?
The answer is: no. Hard data show that most people diagnosed with schizophrenia recover or learn to live with their vulnerabilities. Even in the absence of medical recovery (Menezes et al, 2006).
Furthermore we learn from the recovery movement that even people with a severe, seemingly hopeless psychosis, can get a new perspective on it. A perspective where they can live meaningful lives despite their limitations.
This is called personal recovery
Personal recovery is only possible if a perspective is offered of hope and belief in change and in your own strengths. This hope can be found with other experts by experience. But it is crucial that this kind of hope is also present in society and in the influential biological psychiatry.
And what if your family member doesn’t recover, medical or personal? We say: don’t give up, keep having hope. It surely doesn’t help to say: let’s just give up, you have the diagnosis schizophrenia and that’s a debilitating brain disease which will never get any better.
Compare it to diabetes
Diabetes is a spectrum of symptoms which you’re able to live with. But a minority doesn’t respond to treatment and has severe complications. Would we make a separate diagnosis with a misleading name for this group of people? A name that has the sole purpose to convene that they belong to a group that can’t be cured? That surely isn’t the goal of diagnosis? The purpose of a diagnosis is showing what can be done tohelp, not to make patients and their family members more desperate than they already are.
Where does the pessimism come from?
That’s not so hard. Look at the way that schizophrenia is discussed in biological psychiatry. It’s being called a debilitating brain disease from which you never recover. Even in the most prestigious scientific journals likeNature and Science, schizophrenia is being described for decades as a genetic brain disease from which you can’t recover. Whilst this clearly contradicts the data about the course of those diagnosed with schizophrenia (Menezes et al, 2006). Let’s examine what is written about schizophrenia in the most prestigious scientific journal in the world, Science:
Once the symptoms of schizophrenia occur, they persist for the entire lifetime of the patient, and are almost totally disabling (Sawa and Snyder, 2002).
And of course biological psychiatry means well. But they decide what the view of society is for people with a diagnosis. And the view of policymakers, who decide how much resources can be put into mental health care. Why give money to care for people that don’t recover anyway? Small detail: there’s no scientific evidence that shows that schizophrenia is a brain disease. It sounds tough. It is often depicted like that in media. But there is no scientific proof that it actually is. If only it was more clear. More simple.
If only we could say that it was a genetic brain disease
But we can’t do that. Which means we shouldn’t communicate it like that. It doesn’t help when we provide patients with info that isn’t correct. And of course: without brains, no psychosis, but that’s the same for all mental experiences, healthy or not. And the opposite is true as well: no mental experiences, no brains. Because maturation and programming of the brain is being controlled by our experiences, from the moment we’re born – and even before.
Why then do most biological psychiatrists discuss it as if it was a brain disease?
In the folder of the Dutch Psychiatric Association, ‘talking about schizophrenia’ the following is written:
Schizophrenia is a brain disease…that isn’t curable…there’s a disruption of the activity in certain areas of the brain. This is being expressed by a disrupted balance between substances, which are necessary for the functioning of our nerve cells. This imbalance can be partly rectified by antipsychotic medication.
These days, researchers in biological psychiatry are even discussing it as a progressive brain disease (van Haren et al., 2008), akin to Alzheimer’s disease.
But how is it that this idea of a (progressive) brain disease was born? It’s simple: because research says there’s differences between patients and control groups in biological variables.
What do we mean by that?
For example: we have made a brain scan of a group of 100 patients and of 100 people in the control group. When we compare those scans, we see tiny differences between these two groups. On basis of these kind of differences, researchers state that schizophrenia is a brain disease. These small on average differences are being presented as deficits that can be used as a biomarker for the diagnosis of schizophrenia. But what is not discussed, is that the differences between the groups are too small for us to be able to make correct individual predictions. And thus it seems that the story concerning schizophrenia being a progressive brain disease, is a myth (Zipursky et al., 2013).
A good example to further elaborate this, is the research concerning the heritability of the diagnosis schizophrenia. On this topic, biological psychiatry has made considerable progress. You can read it with a certain regularity in general press: new genes for schizophrenia found!
But upon closer inspections of the results, another conclusion can be drawn.
What is the most important conclusion of the research? Every person in the world has hundreds of genetic variants that increase the risk of developing the diagnosis schizophrenia.
In other words: we’re all susceptible to psychosis (Kendler, 2015)
The genetic variants for the diagnosis schizophrenia are not specific to illness. Furthermore they also increase risk for other mental disorder diagnoses like bipolar disorder and depression.
The truth is that 50 years of intensive biological psychiatric research hasn’t produced any diagnostic biomarker for any mental disorder (Kapur et al., 2012). The most important result of biological psychiatry is that there are no diagnostic results from which we can conclude that there specific diseases like schizophrenia exist. This result is not something that the press gives much attention to and a fact that only few people realise.
The dilemma of biological psychiatry
By stating for decades that schizophrenia is a real brain disease, biological psychiatry has taken on the burden of this problem. Cause current scientific findings don’t justify the conclusion that it is an objective brain disease. So one can expect to get critical questions about this conclusion – the kind that we ask. Not to be a pest, but to create a more nuanced and less desperate view.
We support biological research
The researchers who work with schizofreniebestaatniet.nl also do a lot of biological research in the area of psychiatry. It’s an important topic. We’re passionate supporters of this kind of research. But we are against superficial explanations of uncertain scientific findings. Especially if these findings have noticeable consequences for the wellbeing of patients.
Specialists only see the worst cases
There is another source of pessimism: the academic psychiatrists that determine the definition of schizophrenia only see the patients that are worst off. People who are experiencing a mild psychosis are never seen by them. These persons recover through their own strength, or with the aid of a general practitioner, psychologist, alternative healer or any other kind of help.
It’s logical then that super specialists of academic hospitals think that ‘mild’ cases of schizophrenia don’t exist, simply because they never see these patients. This is known as the Berkson bias, a distortion in the perceived severity of diseases. This bias is also present in modern psychiatry (Maric et al., 2004, Regeer et al.,2009).
The problem of Berkson bias is that new patients in mental health care are being confronted by the image and pessimism of the more severe group, while they could still be placed anywhere in the spectrum. In other words: Berkson bias is that the most negative prediction is in control of the image of the whole spectrum of a certain disease. As if the view that society has of diabetes is being controlled by the small minority that isn’t reacting to treatment. The minority that gets severe complications affecting their eyes, kidneys and circulatory system.
Does the diagnosis of schizophrenia always have a bad prognosis?
Biological psychiatry suggests that the unfavourable prognosis of schizophrenia is mostly the cause of the underlying biological disease state, which is progressive in nature. But objective research shows a more nuanced image. Much of the unfavourable prognosis is not related to the condition itself.
What else can influence the prognosis?
Often the cause is the poor access to care and treatment. The absence of treatment like psychotherapy and job-coaching. Negative reactions of society resulting in exclusion and under-stimulation. Too much dampening by medication. Withdrawing oneself from treatment. Too little response to treatment. Not following treatment. Poverty.
And the presence of other untreated mental disorders like posttraumatic stress disorder, depression, substance abuse and cognitive alterations (Zipursky, 2014). These factors can all influence the prognosis in a negative way. We can do something about most of these factors. So why the gloomy view that it’s all inherent to the biology of the disease?
In England, a national research commission came to a different conclusion: they established that the prognosis was also unfavourable due to the English mental health care operating as a ‘completely dysfunctional system’. In England, mental health care institutions acknowledge that the prognosis of people with the diagnosis schizophrenia can be and should be better, with better care (Schizophrenia Commission, 2012).
DSM5 says: Schizophrenia doesn’t exist
Schizophrenia doesn’t exist. That’s the name of the website. With a reason.
That’s not something we’ve made up. It’s just plainly written in the DSM5. There it says that schizophrenia consists of a set of criteria that roughly describes a group of people so that psychiatrist can communicate with each other. The DSM5 explicitly warns that we shouldn’t think that we’re talking about an objective, fully established disease. That’s not possible, since the criteria for the diagnosis change with each revision of the DSM5 and each international classification system has its own criteria for schizophrenia. The criteria are apparently subject to quite some changes.
The same person gets a different diagnosis for schizophrenia in England than in Amerika
How’s that possible? ‘Schizophrenia’ is defined differently by psychiatrists in England, France and Germany compared to the Netherlands. Because in those countries they don’t use the DSM5 from Amerika, but the ICD10 from the World Health Organisation.
What’s the difference?
Compared to the DSM5, the ICD10 has a broader, somewhat more optimistic definition of schizophrenia. The criteria in DSM5 state for example that it needs to be chronic, while that criterion doesn’t exist in ICD10. ‘Schizophrenia’ is thus a common agreement – and the diagnosis changes over time and changes from country to country. Thus it is not an objective disease.
We are thus not denying that there are people who are suffering tremendously
Let that be clear. These people are of course here, and their need for care is very real. We say that people are unjustly labelled with pessimistic terms agreed on by committees. Constantly changing agreements.
If schizophrenia doesn’t exist as an objective disease. How then can we inform, diagnose and treat?
As we saw before, everyone has a degree of psychosis susceptibility. But not everyone gets a psychotic episode requiring treatment. Psychosis is a mix of different symptoms like delusions, hallucinations, problems with attention and memory, motivational problems and depression or mania.
Every patient has his/her own mix of these symptoms, so that means there’s a broad spectrum through which psychosis susceptibility can express itself. This is what we call the Psychosis Susceptibility Syndrome, or, depending on preference, Psychosis Spectrum Syndrome – or simply PSS (George and Klijn, 2013). PSS incorporates all those different DSM-diagnoses of psychosis such as schizophrenia, schizo-affective disorder, schizophreniform disorder, delusional disorder, substance-induced psychosis, etc.
A little bit of this, a little bit of that. It is PSS
Scientific research shows us that all the different DSM-diagnoses which are incorporated into PSS, are not clearly distinguishable from each other. They are in fact all part of the same psychosis spectrum. They come together as PSS.
About 3.5% of the general population will have PSS, and less than 30% of those get the diagnosis of schizophrenia (Perala et al., 2007). Schizophrenia is actually at the utmost end of the psychosis spectrum, where patients have the most severe symptoms.
Strangely enough there’s currently only one diagnosis of psychosis that really matters. And that’s schizophrenia – in whatever way it’s described. But the diagnosis schizophrenia is only a small part of the much broader spectrum of diagnoses of psychosis. We’ve completely lost track of that. That’s why we should now shine our light on the broader spectrum of PSS and not only on the minority that has the most severe form of it.
Why is PSS called a syndrome and not just an illness?
Syndrome was chosen over illness, because syndrome covers the whole subject better. In medicine, syndrome is used to describe a mix of symptoms, which can appear in variable combinations with each other. It’s not clear whether there’s a disease underneath those symptoms, or multiple diseases, or maybe no disease at all – maybe symptoms are all that’s present. We just don’t know.
Using the word syndrome thus means that you’re saying that you’re not really sure and it’s the reason for you using more general terms. Not flexing your muscles by showing off the genetic brain disease terminology, but having a more modest approach so there’s no misunderstandings. Misunderstandings that could have a negative influence on the lives of many people.
Towards a personal diagnosis
PSS is in fact so broad a diagnosis that it coerces towards a more fine-meshed, personal description. What’s the specific mix of symptoms that this specific person with PSS experiences? This specific mix is the personal diagnosis of the patient. So even if the first diagnosis a person gets is PSS, that diagnosis can’t be used to make stereotypes of people or put them all in the same box, like what happens now when you’re diagnosed with schizophrenia. PSS is too broad and too variable for this. PSS is only an invitation to make a more personal diagnosis based on the specific mix of symptoms of this unique person.
Conclusion: let the future begin.
We’re not the only ones. And not the first ones either
In the whole world, more and more people are gathering to dismantle the schizo-mythe (George and Klijn, 2013, Henderson and Malhi, 2014, Kinderman et al., 2013, Moncrieff and Middleton, 2015, van Os, 2009). Besides, this is not something new: already in 1976 a famous Dutch psychiatrist, Herman van Praag, talked about the ‘impossible concept schizophrenia’ (van Praag, 1976a, Van Praag, 1976b) and the ‘tunnelvision in biological psychiatry’ (Van Praag et al., 1990). And of course we all know the sharp analyses published by Richard Bentall and Mary Boyle.
What we’re trying to say: stop using semi-scientific but really empty schizo-words. Stop predicting in a pessimistic way. Instead provide people with realistic, scientifically correct and hopeful terminology and use PSS as a start for a personal diagnosis.
A syndrome that affects 3.5% of the general population, but from which most of them recover.
And for those that do not recover, we should call upon all our resources to achieve the best possible result. We shouldn’t only strive for medical recovery, but also for societal and personal recovery.
So don’t be pessimistic, and give us all the resources needed to achieve this goal. Because there’s always hope for change. No one deserves to be judged with lifelong negative expectations as a result, simply because they’re culturally incorporated into an empty diagnostic shell.
With our site schizofreniebestaatniet.nl we want to contribute to the recovery of as many people as possible who are affected by PSS. We want to help people cope with their sensitivity to psychosis.
Editorial Staff Schizofreniebestaatniet.nl
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