of schizophrenia is unscientific and damaging to those to whom it
is applied, argue Marius Romme and Paul Hammersley,
both part of a new campaign entitled CASL (Campaign to Abolish
the Schizophrenia Label). They say we should replace it with post-traumatic
idea that schizophrenia can viewed as a specific, genetically determined,
biologically driven, brain disease has been based on bad science
and social control since its inception.
(2004) lists a fundamental dissatisfaction with the concept of schizophrenia
as an illness that can be traced back over 80 years. More recently
Bentall (1990, 2003), and Boyle (1990) have published elegant, well
researched arguments clearly demonstrating that the concept of schizophrenia
is neither valid nor reliable. Despite
this, mainstream psychiatry continues to perpetuate the myth that
when talking about ‘schizophrenia’ we are discussing
something that actually exists. For example, the opening statement
of the National Institute for Mental Health public information website
in the USA reads as follows: “Schizophrenia
is a chronic and severe disabling brain disease”. As
Read (2004) points out, such an opinion is common in psychiatric
textbooks and drug company pamphlets. The CASL campaign is driven
by two central factors:
The concept of schizophrenia is unscientific and has outlived any
usefulness it may once have claimed.
label schizophrenia is extremely damaging to those to whom it is
For a diagnosis to have any clinical utility it must be reliable.
That is to say there must be consistency in how individuals are
diagnosed. There is no evidence that this has ever been the case
with schizophrenia. Read (2004), has illustrated how it is possible
for 15 individuals with nothing in common to be gathered together
in one room and all be diagnosed with schizophrenia. Test- retest
analysis is as low as 37% and in 1970 when 194 British and 134 American
psychiatrists were asked to provide a diagnosis on the basis of
a case description, 69% of the Americans diagnosed schizophrenia
whilst only 2% of the British did so. There is no definitive evidence
to suggest that the reliability of the diagnosis has improved since
unreliable diagnosis cannot by definition be valid. However it is
worth pointing out quite how poorly the diagnosis of schizophrenia
performs in terms of validity. Firstly, a diagnosis of schizophrenia
tells us nothing about cause. Biological research into cause offers
little more than a series of dead ends (Bentall 2003, Read 2004),
and the significance of genetic inheritance in schizophrenia has
been vastly overstated and is seriously methodologically flawed
(Joseph 2004). Secondly, a diagnosis of schizophrenia tells us nothing
about prevalence rates. It is often blandly asserted that schizophrenia
has a prevalence rate of 1% in all societies. This is not true;
there is a wide disparity of prevalence between rural and urban
environments and different research has shown prevalence rates of
between 0.33 and 15%. In addition a diagnosis of schizophrenia tells
us little about the course of the illness. Kraepelin initially suggested
that schizophrenia was a chronic deteriorating condition in all
cases. We now know that all outcomes are possible from chronicity
to complete recovery.
be labelled ‘a schizophrenic’ is one of the most devastating
things that can happen to anyone. This label implies dangerousness,
unpredictability, chronic illness, inability to work or function
at any level and a lifelong need for medication that will often
be ineffective (Whitaker 2005), but will usually cause unpleasant
side effects. To champion the idea that schizophrenia is an illness
just like any other (sometimes referred to as mental health literacy)
makes the situation worse, in that it has been shown to increase
amongst other things mistrust and a desire for social distance (Read
et al in press).
desire of our campaign to place the label ‘schizophrenia’
into the diagnostic dustbin in which most certainly belongs is not
therefore based solely on the poor science that surrounds it, but
also on the immense damage that this label can bring about. A single
word can ruin a life as surely as any bullet and schizophrenia is
just such a word.
is hope. In 2002 in order to remove the stigma and prejudice associated
with the term schizophrenia, The Japanese Society of Psychiatry
and neurology renamed the condition. Their reasons were that the
old term ‘Seishin Buntreyso Byo’ (mind- split disease)
was ambiguous, had purely negative connotations and was in part
related to the inhumane treatment of most people who carried the
diagnosis (Sato 2006). The new term is ‘Togo Shitcho Sho’
(Integration disorder). It is defined not as a specific illness,
but as a syndrome based on a stress vulnerability model, with many
different causes, symptoms and outcomes. This change was brought
about largely by lobbying from service users and family groups,
and has been welcomed by service users and families alike.
already exist. Given the high levels of trauma in the lives of individuals
who experience psychosis (Read et al 2004, Hammersley et al 2003)
one of us (Marius Romme) has for a number of years called for a
new diagnostic category of post-traumatic psychosis. Colin Ross
in the United States has made a similar call for a category of Dissociative
CASL campaign began as collaboration between The COPE Initiative
at the University of Manchester and The Hearing Voices Network UK.
We will attempt to build a broader coalition of service users groups
and like-minded professionals, with the aim of bringing a more coherent
and humane diagnostic system to service users worldwide.
do not intend to go away.
Romme is a visiting professor at the Mental Health Policy Centre,
University of Central England in Birmingham. He was a professor
for social psychiatry at the Medical Faculty of the University of
Maastricht (Netherlands) from 1974 to 1999, as well as consultant
psychiatrist at the Community Mental Health Centre in Maastricht.
Hammersley is programme director for the COPE (Collaboration of
Psychosocial Education) Initiative at the School of Nursing Midwifery
and Social Work at Manchester University.
Bentall, R.P. (1990). Reconstructing schizophrenia. Routledge.
Bentall, R.P. (2003). Madness Explained. Allen Lane. Penguin Books.
Boyle, M. Schizophrenia: A Scientific delusion. Routledge. UK.
4. Joseph, J. The Gene Illusion: Genetic Research in Psychiatry
and Psychology Under the Microscope. Ross-on-Wye. PCCS Books.
Hammersley, P.A., Dias, A., Todd, G., Bowen Jones, K., Reiley, B
Bentall, R.P. (2002). Childhood trauma and hallucinations in bipolar
affective disorder: A preliminary investigation. British Journal
of Psychiatry, 182, 543-547.
Read, J, Mosher, L.R. & Bentall, R.P. (2004). Models of Madness.
Sato, M. (2006). Renaming schizophrenia: A Japanese Perspective.
World Psychiatry, Feb, 5, 1, 53-55.
Whitaker, R. (2004). The case against anti-psychotic drugs: a 50-year
history of doing more harm than good. Medical Hypotheses., 62, 5-13
to treatment is the only virtue of (any) psychiatric diagnosis
Phil Barker, Professor of Health Sciences, Trinity College, Dublin,
October 30, 2006
I wish Marius Romme and Paul Hammersley every success in their campaign
to abolish 'schizophrenia'
However, I wonder if - in a couple of decades time - the 'alternatives'
will have assumed much the same stigmatising power as the old 'label'.
This is not so much about the validity or reliability of a medical
diagnosis, which has been found wanting, from all kinds of perspectives
for over forty years, but one about 'meaning'.
People - whether professional or lay - attribute certain meanings
to diagnostic labels. Changing the labels may be an interesting
linguistic project but may not seriously address the underlying
The 'big question' in my book is - "why do we have to assign
diagnostic labels in the first place?" When one condenses all
the available evidence, the only thing we can be certain of is that
some people are characterised by this or that - or these or those
- features. These features are rarely, if ever, constant, but come
and go as part of the person's lived experience. This applies as
much to me as any 'schizophrenic' or "person with dissociative
psychosis". As far as I can see the only virtue in attributing
a diagnosis is to gain access to medical treatment.
I believe that the kind of problems, previously named 'schizophrenia',
are human (not medical) problems, and require human solutions. I
would have hoped that an outfit like the Hearing Voices Network
would be in sympathy with such a view and would not be chasing name-changing,
which is more of a cosmetic than a fundamental form of address of
such 'human problems'.
one label with another is no answer
Maureen Eldred, carer
November 16, 2006
Replacing one stigmatizing label with another is not the answer.
People are individuals and their human problems should be addressed
humanely on an individual basis, rather than a 'one size fits all'
basis in the case of psychiatric labelling.
Foolish to rename
Sarah Yates, service user, Cambridge, UK
June 28, 2007
is a heterogeneous group of disorders, with a variety of causes,
some of which may overlap. There is no more evidence 'schizophrenia'
is caused by post-traumatic stress than there is evidence it is
genetic, autoimmune, toxic or parasitic. Indeed, having read the
scientific literature, there is probably less. Since the causes
of the schizophrenias remain to be eludiated it seems foolish to
rename these disorder with a label suggesting causality is understood.
How to get
Gabrielle Bryant, USA.
May 25, 2009
schizophrenia? This makes sense! Because the schizophrenia label
is so flawed. It might help people associate with their symptoms
better, instead of exaggerating their worries. It is not 'split
mind' 'cancer of the mind' and you can recover from psychotic episodes.
To be told again and again by mental health practitioners that you
have to be on meds for the rest of your life is also a big concern.
In changing the label it might offer better solutions.
also warrants abuse in mental health systems. While other people
can be stuck in a hospital but they can refuse meds, with schizophrenia
label you will be kept longer and not be allowed to refuse medications.
Medications are not the end-all solution. They should be a last
resort, not a first...so should the word schizophrenia. I don't
want to carry this label to my death, and how do you get in-diagnosed?
I was diagnosed for other things than voices or seeing things. Then
they developed after a few years as a response I believe to what
I read. Now they're gone for good. It's all very psychological.
Meds can give you that comfort, but I was astounded at how well
I was doing and that I 'differed' from all the others. Well, I don't
think I ever was schizophrenic. In fact, no one is. People are just
people...there is no such thing as a 'schizophrenic mind'
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