Naar aanleiding van het toekennen van de John Maddox-prijs aan prof. Wessely (klik hier)
schreef prof. Malcolm Hooper een zeer uitgebreide open brief (tekstfragmenten: zie onder).
Om de gehele brief te kunnen lezen, klik op onderstaand logo:
Professor Simon Wessely's award of the inaugural John Maddox Prize for his courage in the field of ME and Gulf War Syndrome
Professor Malcolm Hooper (with members of the ME community)
12th November 2012
On 6th November 2012 it was announced that:
"Two strong-minded individuals are the first winners of an award for standing up for science...
The prize rewards individuals who have promoted sound science and evidence on a matter of public interest,
with an emphasis on those who have faced difficulty or opposition in doing so".
International clinicians and medical scientists have repeatedly shown that
Wessely has not produced "sound science and evidence" about either ME or Gulf War Syndrome and
his work is widely referred to as "pseudoscience" by patients and professionals alike.
Indeed, 21 years ago Peter Behan, Professor of Neurology at Glasgow, stated that the psychiatric hypothesis:
"lacked all scientific merit and now, with the emergence of hard data, can be totally rejected"
(Myalgic Encephalomyelitis: Postviral Fatigue Syndrome: Diagnostic and Clinical Guidelines for Doctors. The ME Association, 1991).
What the "Wessely School" (Hansard: Lords: 9th December 1998:1013) refer to as "CFS/ME" is,
according to them, a "functional somatic syndrome" (i.e. a behavioural disorder)
in which medically unexplained fatigue is perpetuated by inappropriate illness beliefs, pervasive inactivity,
current membership of a self-help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9 – see below).
They insist that it should be managed by behavioural interventions
(cognitive behavioural therapy/CBT and graded exercise therapy/ GET) to "reverse" and "cure" the patients' misperceptions.
Simon Wessely believes that attri-bution by patients to a virus is somatisation "par excellence" (J Psychosom Res 1994:38:2:89-98).
According to the Wessely School's beliefs, to their teaching of students and other clini-cians, and
to their recommendations to Government departments to which they are official ad-visors on "CFS/ME",
there are no physical signs of disease and there is no pathology causing the patients' symptoms, and
patients are merely "hypervigilant" to "normal bodily sensations".
The influence of industry
The permanent health insurance industry does not like the disease ME/CFS.
Despite the fact that the WHO has classified ME as a neurological disorder since 1969,
the permanent health insurance industry for which many of the Wessely School psychiatrists work
is known internationally not to pay out on a policy if they can possibly avoid doing so:
"UNUM stands to lose millions if we do not move quickly to address this increasing problem"
(UNUM's CFS Management Plan; Dr Carolyn Jackson, 4th April 1995).
Certainly, the Wessely School has worked assiduously
for the last quarter of a century to change the WHO classification and
they have exerted significant control over the perception of the disorder
throughout the UK for over twenty five years,
including over the funding bodies such as the Medical Research Council
(where the disorder comes under the aegis of its Mental Health Board:
the MRC's Mental Health Board Strategy and Portfolio Overview report of January 2005 confirms at paragraph 6.2:
"Mental health research in this instance covers CFS/ME").
In 2000, the UK WHO Collaborating Centre for Mental Health at the Institute of Psychiatry
misclassified the disorder as a mental (behavioural) disorder in its
"Guide to Mental Health in Primary Care" by using Wessely's own material on "CFS/ME".
The Guide was funded by the Department of Health. Despite strenuous complaints and
despite WHO ICD-10 classifications being mandatory in the UK,
sales of the Guide were allowed to continue unabated until almost 30,000 copies had been sold.
Eventually, an erratum was issued but this did not prevent
the disorder being wrongly classified as a mental disorder in the NHS Mental Health Data Manual,
nor did it prevent Ministers of State and Members of Parliament from receiving the impression that
it was the WHO itself (not the WHO Collaborating Centre in the UK) that had re-classified the disorder as a mental disorder.
In September 2001 the WHO issued a statement repudiating the unofficial re-classification by the UK Collaborating Centre.
The matter was raised in Parliament on 22 January 2004,
where Earl Howe noted the suggestion that Professor Wessely had
"effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness"
(Hansard [Lords] 23 January 2004:Vol 656:No 7:1192).
The ME Association Newsletter of March 2004 stated:
"The issue mattered because the psychiatrists had stifled access to research funds
for any UK researchers wanting to study organic causes".
Undaunted, these Wessely School psychiatrists then asserted that
the WHO ICD-10 itself had classified the same disorder in two places,
once in the Neurological Section and also in the Mental (Behavioural) Section.
Yet again, their claims were repudiated by the WHO, who on 23rd January 2004 confirmed:
"According to the taxonomic principles governing ICD-10,
it is not permitted for the same condition to be classified to more than one rubric".
Ministers were forced to correct their own misinformation and
on 11th February 2004 the Health Minister formally confirmed that
the correct classification for the disorder remains neurological.
In their determination to supplant sound science with their own ideology,
the Wessely School resolutely dismiss the international biomedical evidence-base and
continue to target "the attitudes and beliefs of doctors"
in order to further their own disproven beliefs that
ME is a behavioural disorder and thus does not qualify for insurance payments
(Cognitive and behavioural treatments for functional somatic syndromes;
Presentation by Professor Peter White; Royal Society of Medicine;
International Forum on Disability Management, 10th- 12th September 2012).
Is there a "cover-up" about ME/CFS?
Written evidence exists of a "cover-up" with regard to ME (personal communication, 19th September 2004) and
public opinion is mounting that all those who did not speak out are themselves culpable and must be held to account.
Twelve years ago, the Opinion of a Leading Queen's Counsel
(Lord Campbell of Alloway, 2, King's Bench Walk, Temple, London EC4Y 7DE) obtained on 6th April 2000:
"On the document you have sent me there is an overwhelming case
for the setting up of an immediate independent investigation
as to whether the nature, cause and treatment of ME as considered by the Wessely School
is acceptable or consistent with good and safe medical practice.
There is substantial doubt as to whether such could be the case
in view of the clear division of medical opinion.
The document and a copy of this Opinion
should be sent to the NHS by the good offices of Lord Hunt of Kingsheath
with whom informal contact should be made and
it could well be that the Department would wish to send an observer to the enquiry and (if so advised) participate.
On the basis of such information,
if the formal request were to be refused it could be possible to seek declamatory relief against the GMC".
Given how much evidence has been presented to them over the years,
it is beyond doubt that the Prime Minister, the DWP, the NHS, the DoH, the MRC, NICE and other agencies of the State
do indeed know that ME is a serious, chronic, multi-system neuro-immune disease and
not a behavioural disorder as asserted by Simon Wessely, but they refuse to act.
Is it possible that in time they, too, will all be investigated for
refusing to listen to very sick people, for denying them appropriate medical investigation and care, and
for imposing upon them psychological interventions which cannot help but only harm them?
There is thus an abundance of empirical evidence
from ME/CFS patients and charities that
GET can result in high rates of adverse effects, and
this evidence was conveyed to the Medical Research Council and other agencies
but has been comprehensively ignored in their support of Wessely's belief
that ME is a behavioural disorder.
Despite the evidence of abnormalities in
the immune system, the central nervous system, the endocrine system,
the cardiovascular and respiratory systems, the musculoskeletal system,
the gastrointestinal system and the ocular system,
all of which have been credibly demonstrated in ME,
over the years Wessely has consistently dismissed or denied it,
yet he has produced no evidence of his own to disprove the biomedical evidence.
Illustrations of Wessely's published views about people with ME/CFS
In 1989 Wessely wrote in the BMJ: 298:1532-1533:
"(neurasthenia) is back with a vengeance.
My local bookshop has just given ME the final seal of approval, its own shelf.
A little more psychology and a little less T-cells would be welcome".
Again in 1990, Wessely wrote about people with ME:
"The description given by a leading gastroenterologist at the Mayo Clinic remains accurate:
'The average doctor will see they are neurotic and he will often be disgusted with them' "
(Chronic Fatigue and Myalgia Syndromes. Simon Wessely.
In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al. Pub: Hogrefe & Huber, 1990).
For the avoidance of doubt, Wessely often claims that this quotation
from what he published has been deliberately reversed in order to demonise him,
but the extent and content of his other publications on patients with ME
robustly counter his proffered "explanation".
In 1991Wessely wrote:
"Continuing attribution of all symptoms to a persistent 'virus' preserves self-esteem" (JNNP
1991:54:153-158) and "The prognosis may depend on maladaptive coping strategies and the attitude of the medical profession"
(Pulse of Medicine 1991:14th December:58).
"It seems that ME sufferers prefer to feel that they have a 'real' disease
– it is better for their self-esteem (and) the label 'ME' helps legitimise their dealings with doctors"
(Eradicating myalgic encephalomyelitis (ME). Simon Wessely.
Report of meeting held on 15 April 1992 at Belfast Castle; Pfizer Invicta Pharmaceuticals, 4-5).
on 12th May 1994, giving the 9th Eliot Slater Memorial Lecture at The Institute of Psychiatry,
Wessely talked about ME in terms of hysteria, and said:
"I will argue that ME is simply a belief,
the belief that one has an illness called ME...
Neurasthenia was the disease of modern life, so is ME...
Talk of viruses and the immune system is deeply embedded in popular consciousness...
Does it really matter if the 5HT neurotransmission is enhanced
(that's [ME]CFS) or suppressed (that's major depression) --
what's a little up or down regulation among friends?
I will argue that this line here represents not the line between low and high cortisol responses,
but the line between real and unreal illness...
Royal Free Disease itself is part of the world of myth...
As Tony David has called it, it is the H (hysteria) word,
never spoken but always present in the ether between doctor and patient...
The mere existence of the word (hysteria) might condemn the sufferer to a lifetime of non-recovery,
if only to prove the doctor wrong...
viruses are an attribution free from blame...
there's no blame, no shame, and no stigma...
Hence our virus doctor exists not to hold out hope of cure – but to give legitimacy to distress...
Each generation will find it necessary to discover its own ME".
Also in 1994, Wessely wrote:
"Most doctors in hospital practice will be familiar with patients
who complain about a wide variety of symptoms but whose physical examination and investigations show no abnormality"
"(Such) symptoms have no anatomical or physiological basis"
"Patients at the severe end of the spectrum
exert a disproportionately large and avoidable financial burden on the health and social services"
"Patients with inexplicable physical symptoms
are usually strongly resistant to any psychological interpretation (and)
are generally viewed as an unavoidable, untreatable and unattractive burden"
(British Journal of Hospital Medicine 1994:51:8:421-427).
In 1996 Wessely wrote:
"The perpetuating factors include
inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state"
"CFS is dogged by unhelpful and inaccurate illness beliefs,
reinforced by much ill-informed media coverage;
they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder"
"Increased symptom focusing occurs in CFS sufferers;
(this) increased concern leads to selective attention and 'body watching':
this can intensify the perceived frequency of symptoms,
thereby confirming illness beliefs and reinforcing illness behaviour"
(Update 14th August 1996:61).
There are many more examples of
Wessely's beliefs and published works about ME (including several textbooks) and
the above are merely illustrative.
Despite the advancement of medical science over the last quarter of a century,
Wessely's views about ME have remained intransi-gent.
There is abundant evidence of his total disregard of the significant biomedical evidence base
that has been shown to underpin ME, and
despite his irrefutable indifference to the profound suffering of people blighted by ME,
Simon Wessely is honoured with the inaugural John Maddox Prize
for his courage in standing up for "sound science".
That is a travesty of science, truth and justice.