Wednesday, August 17, 2011

Disease of the brain, not the mind, has no stigma

Submitted by Susanna Agardy <susannaa@dodo.com.au>:

Letter to Prof Colin Blakemore: 'Disease of the brain, not the mind, has
no stigma' ( 'The Times', 2 August 2011)
by Susanna Agardy

Dear Prof Blakemore,

Re: 'Disease of the brain, not the mind, has no stigma' ( 'The Times', 2
August 2011)

In your article I note an unfortunate sidestepping of major issues in
'CFS' in which you include ME. From a discussion of 'CFS' you segue into
a discussion of mental illness. You seem to try to console 'CFS'
sufferers by saying that once neurology and psychiatry have been
reunited the stigma of their (mental?) illness will retreat. This
ignores the fact that ME is already considered a neurological illness
without being a psychiatric one, by the WHO.

As a sufferer, I would venture to claim that ME sufferers are not
affected by shame as you imply, but rather by feelings of neglect and
invalidation which their misdiagnoses and missed diagnoses inflict on them.

Patients with ME have been diagnosed with a psychiatric condition purely
on the basis that they have a physical condition – an intractable one
for which there is no simple test or explanation as yet. A group of
psychiatrists of whom Wessely is a leading member have invented a
diagnosis of somatisation or dysfunctional cognition for which there is
no evidence, and substituted it for the experience and symptoms of
patients, ignoring or reframing physical symptoms such as orthostatic
intolerance and post-exertional malaise. As a result, motives such as
malingering have been attributed to patients.

The psychiatrists then invented the CBT/GET treatment for this invented
diagnosis. Yet, CBT/GET is 'a purely pragmatic approach and without
theoretical foundation' as Prof Sharpe has cheerfully admitted. So, the
MRC has been supporting research on a treatment for which there is no
theoretical basis (with seriously adverse consequences already known to
patients and clinicians) for a condition of which the underlying
features were admittedly unknown to it and which has been reframed as a
psychological theoretical construct. All in the name of science and the
taxpayer.

You seem to be saying that it was too hard for the MRC to get a handle
on this multi-faceted condition. So, the MRC settled on the assumption
that it is psychological even in the face of numerous findings of
physiological underpinnings by independent scientists many years ago. It
seems the MRC endorsed Wessely et al's prescription that 'No
investigations should be carried out to confirm the diagnosis.' In
addition, the Wessely school's claim that the more patients protest that
they have a physical condition the more they are thought to be
psychiatric purports to box in patients so that the psychiatrists can't
be proven wrong by scientific testing. This behaviour indicates an
active turning away from the physical aspects of 'CFS' by the MRC. No
wonder 'CFS' patients were protesting. We hope that the current
allocation of funds at least begins to repair the situation.

Patients do not generally attack researchers who approach their
condition with respect and a genuine open-mindedness to discovering the
source of their problems. The Wessely school has not shown this respect
nor any scientific open-mindedness. They insist on their psychosocial
model, ignoring the biomedical abnormalities in spite of the mounting
evidence for these. All the while they parade themselves as experts in
'CFS'. It is also widely ignored that Wessely has been insulting and
provoking ME patients for many years and sneering at their disappointments.

If one or more persons have unfortunately overreacted to his
provocation, is that an occasion to invite the media to ridicule and
denigrate an entire group of ill patients? Is this in accord with the
standards of behaviour in psychiatry? Wessely himself stigmatizes mental
illness in the course of his crusade against ME patients.

Wessely claims to have given up research on 'CFS' 10 years ago. How is
it then that we seen his name on at least two recent publications? (He
features as participanting author in the PACE study and the study of
XMRV and CFS with M McClure et al, both published in the past year.) His
recent publicity-seeking in relation to 'CFS' also does not indicate
retirement from the field.

Wessely has been widely quoted as saying that he now goes to Iraq and
Afghanistan to feel safer. This claim would appear to be grossly
disrespectful to the many thousands of civilians and soldiers who have
been killed and maimed there. I wonder if the maimed and the relatives
of the dead would agree with him? It would seem that Wessely is willing
to trivialize these large-scale, tragic conflicts to dramatise his own
sense of victimhood.



What benefit does Prof. Wessely hope to gain from lashing out at very
ill ME patients in this way?

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