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ME/CFS?/CFIDS Scandal UK
Wednesday, 21 January 2004
ME/CFIDS/CFS/FM UK Scandal
FINAL PAGE
Continued from Jan20
page1 Jan17, page2 Jan18, page3 Jan19, page4 Jan20
_____________________
Appendix II:

Quotations from the published works of Dr Michael Sharpe on ME/CFS

As with Wessely, it is not just a matter of noting the more
offensive statements but rather it is the relentlessness of the same
message over more than a decade (and the fact that the message does
not adapt to, but actively dismisses, the strength of emerging
biological evidence) which shows Wessely School psychiatrists to be
out of touch with international scientific knowledge.

1991

Psychiatric management of Post Viral Fatigue Syndrome M Sharpe
British Medical Bulletin 1991:47:4:989-1005

"Psychiatric assessment distinguished factors that perpetuate the
condition from those that may have precipitated it. Treatments are
targeted at perpetuating factors.

"To exclude (patients with a psychiatric diagnosis) is practically
restrictive.

"Psychiatric management may be defined as the assessment and
treatment of the mentally ill.

"Multiple perpetuating factors may operate (and) the following have
been suggested in CFS:

"Infection: viral infection is of theoretical interest but of minor
importance in managing established cases

"Immune dysfunction: the possibility that immune function is
impaired by psychosocial factors and may be improved by psychiatric
treatment is a tantalising possibility

"Other physiological factors: Several physiological factors may
perpetuate symptoms. These include the consequences of inactivity
and hyperventilation

"Psychiatric disorder: Syndromes conventionally
termed "psychiatric" have been shown to occur in the majority of
patients with CFS. Extensive physical investigation is unlikely to
be fruitful and should be limited

"Other psychological factors: Personality factors (attitudes,
beliefs and thoughts) and behaviour have been shown to perpetuate
disability. These unhelpful or "dysfunctional" cognitions include
the beliefs that recovery from the illness is not under personal
control or that the illness is poorly understood. It has been
suggested that dysfunctional cognitions and maladaptive behaviour
interact with the physiological factors and psychiatric illness to
perpetuate the disability that comprises CFS. Increasing physical
deconditioning.may lead to helplessness.

"Social factors: because of their possible importance in CFS
(social factors) deserve discussion. One such factor is our
cultural attitude to symptoms occurring in the absence of
demonstrated physical disease. Such symptoms are frequently
regarded as revealing personal weakness and as not being a valid
reason for exemption from daily demands. Physical disease, on the
other hand, particularly if validated by a doctor, is rarely
considered to be the responsibility of the afflicted, merits
sympathy, and excuses the sufferer from meeting the demands of
others. Patients without a "physical" disease label for their
illness may consequently experience difficulty in explaining their
disability to friends, family or employers. Hence they may request
a "physical diagnosis" from doctors. In response to the lack of
acceptance of the "reality" of the symptoms of CFS, support has been
sought for the existence of a disease called myalgic
encephalomyelitis or "ME"...the insistence that "ME" is an
exclusively physical disease with a poor prognosis may have been
unhelpful for sufferers (and) such a restricted conception of the
problem may have perpetuated illness in some individuals".

Under Assessment of CFS, Sharpe again states "the use of extensive
laboratory investigation may be psychologically harmful to the
patient by reinforcing their beliefs about serious physical disease.

" Even if shown to be beneficial, such (immunological) treatment is
unlikely to be feasible on a wide scale because of cost.

"There are many anecdotal reports (of the efficacy of antidepressant
drugs) in CFS.

"Cognitive behaviour therapy is a development of Behaviour Therapy
in which emphasis is placed on changing the patients' cognition as
well as their behaviour. The aim is to show that the patient can
regain control of their lives and that their illness is not so
mysterious as to be untreatable".

Under Guidelines for Management, Sharpe yet again states "Excessive
investigation should be avoided. Problems may arise if the patient
requires a diagnosis the doctor feels is inappropriate or wants
certification of permanent invalidity (ie) "ME".

"There is evidence that psychiatric treatment can reduce disability
in CFS. In some patients it can be 'curative' ".

1991

Mania and recovery from chronic fatigue syndrome MC Sharpe, BA
Johnson JRSM 1991:84:51-52

"There is anecdotal evidence that (antidepressants) can reduce
disability in CFS.

"Psychosocial factors may maintain disability. Family members may
reinforce both beliefs and avoidance. We suggest that the clinical
assessment should consider mood, beliefs, avoidance of inactivity
and the role of the family".

1992

Fluctuations in perceived energy and mood among patients with
chronic fatigue syndrome C Wood, M Sharpe et al JRSM
1992:85:195-198

"Because of its suspected viral aetiology, CFS is becoming an
increasingly frequent presentation seen by specialists in infectious
diseases. Current thinking (here Sharpe quotes a self-reference)
does not require the presence of a viral aetiology in defining the
syndrome

"(Patients') higher levels of depression serve to reinforce the now
widely current notion that such patients may be suffering from a
depressive illness, of which physical fatigue is a somatic
manifestation."

1994

The Chronic Fatigue Syndrome: A Comprehensive Approach to its
Definition and Study. K. Fukuda, S.Straus, M Sharpe et al
Ann Int Med 1994:121:12:953-959

"The use of tests to diagnose the chronic fatigue syndrome should be
done only in the setting of protocol-based research. In clinical
practice, no additional tests, including laboratory tests and neuro-
imaging studies, can be recommended. Examples of specific tests
(which should not be done) include serologic tests for
enteroviruses; tests of immunologic function, and imaging studies,
including magnetic resonance imaging scans and radionuclide scans
(such as single photon emission computed tomography (SPECT) and
positron emission tomography (PET) of the head. We consider a mental
status examination to be the minimal acceptable level of assessment.

"The exclusion of persons (with psychiatric disorders) would
substantially hinder efforts to clarify the role that psychiatric
disorders have in fatiguing illness. We dropped all physical signs
from our inclusion criteria (because) their presence had been
unreliably documented in past studies."

1995

Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Wessely
S and Sharpe M. In: Treatment of Functional Somatic Symptoms. Ed:
Mayou R, Bass C and Sharpe M. (chapter 16): OUP 1995

On the issue of patients' organisations making medical research
information available to members, Sharpe states "Such information
may have a considerable and often unhelpful influence on patient
attributions of illness."

1996

Cognitive behaviour therapy for the chronic fatigue syndrome: a
randomised controlled trial Michael Sharpe, Tim Peto et al
BMJ 1996:312:22-26

"Cognitive behaviour therapy offers a novel approach to the
treatment of the chronic fatigue syndrome.(it) aims at helping
patients to re-evaluate their understanding of the illness..it was
both acceptable and more effective than medical care alone."

(One of the trial participants (Catherine Rye) had a letter
published in the Independent on 30 March 1996 in which she made
valid points: "I participated in the Oxford trial.the article
implies that a new successful treatment has been found for ME but
that sufferers do not want to accept it. There are facts about the
trial that throw into doubt how successful it is. It is stated that
patients in the control group received standard medical care. I was
in that group but I received nothing. Also, patients receiving
treatment had to attend weekly hospital visits, thus excluding the
most severely affected sufferers. Patients who "improved
significantly" only increased their score from 70 to 80 on a scale
of general functional ability.")

1997

Treating medically unexplained symptoms. EDITORIAL (Editor's Choice).

Richard Mayou and Michael Sharpe. BMJ 1997:3:15:561-562

"Evidence for the superiority of new ways of thinking about and
managing such patients is growing. These new treatments, often
referred to as cognitive behavioural therapies, take a new approach
(which) is in keeping with the evidence that the perpetuation of
unexplained somatic symptoms is best understood in terms of
psychological factors (such as) misinterpretation of bodily
sensations and unhelpful coping behaviour."

1997

Chronic Fatigue Syndrome: A Practical Guide to Assessment and
Management

Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199

"The only treatment strategies of proven efficacy are cognitive
behavioral (sic) ones.

"The clinical problem we address is the assessment and management of
the patient with a belief that he / she has a fatiguing illness such
as CFS, chronic fatigue and immune deficiency syndrome (CFIDS)
[CFIDS in fact stands for chronic fatigue and immune dysfunction
syndrome] or myalgic encephalomyelitis (ME). The patients who cause
the greatest clinical difficulty are those with both severe symptoms
and strong beliefs. The majority of patients believe that their
symptoms are the result of an organic disease process. Many doctors
believe the converse.

"It is particularly important to focus on factors which may be
perpetuating the illness. A large number of somatic symptoms
suggests a greater likelihood of psychiatric disorder. A conviction
of a solely physical cause for symptoms is the single most
consistent predictor of poor outcome.

"Beliefs are probable illness-maintaining factors and targets for
therapeutic intervention

"Many patients receive financial benefits and payments which may be
contingent on their remaining unwell. Recovery may therefore pose a
threat of financial loss

"Personality is important..the account of an informant (about the
patient's personality) is often helpful

"Most sufferers are seeking confirmation of their own intuition that
they are suffering from a particular condition, rather than
reassurance that they are not

"Abnormal physical signs should not be accepted as compatible with a
diagnosis of CFS

"In our experience, postural hypotension usually resolves with
increased activity

"Reports from specialist settings have shown statistically increased
rates of abnormal results on tests for parameters such as
antinuclear factor, immune complexes, cholesterol, immunoglobulin
subsets and so forth. Their significance is for researchers rather
than clinicians and we feel that testing for such variables is more
likely to result in iatrogenic harm (caused by doctors) than good

"Many physicians are reluctant to make the diagnosis of CFS (because
of) reinforcing unhelpful illness beliefs

"Patients need a diagnosis in order to organise their dealings with
the world of benefits

"Perpetuating factors (include) reinforcement of sick role by mother
and doctor

"An important task of treatment is to return responsibility to the
patient for rehabilitation without inducing a sense of guilt

"(CBT) is acceptable to patients, safe and more effective than
standard medical care

("standard medical care" is not defined)

"It is usually possible to persuade these patients to try
antidepressants

"Disability systems and insurance agencies are sceptical about CFS.
When asked to comment in benefits or insurance claims, we do not
support claims for permanent disability until all reasonable efforts
at rehabilitation have been tried."

1997

Chronic fatigue syndrome and occupational health A Mountstephen
and M Sharpe Occup Med 1997:47:4:217-227

" (the term myalgic encephalomyelitis) has been used to define a
supposedly specific disease associated with viral infection. Despite
this, the existence of ME as a specific syndrome remains
unestablished. Use of the term is best avoided

"The label of CFS avoids the connotations of pseudo-disease
diagnoses such as ME

"Patients' beliefs and behaviour are often a prominent part of the
clinical presentation (which) is most commonly diagnosed in young
and middle aged females

"the evidence for an association between immunologic abnormalities
and CFS remains unclear

"Both self help books and the media have tended to emphasise medical
explanations at the expense of psychiatric conceptualisations

"CFS may serve as a culturally defined function which allows a
socially acceptable expression of distress

"illness perpetuating factors are more important than predisposing
or precipitating factors

"psychiatric assessment is recommended in every case

" in most cases of chronic fatigue, few laboratory investigations
are necessary

"important aspects are the individual's beliefs about their illness

"Exercise therapy may be considered for patients who are physically
inactive

"the only psychological treatment supported by the evidence is
cognitive behavioural therapy (which) is well fitted to the task of
helping patients achieve a more helpful view of the illness

"referral to 'specialists' should be avoided as they can entrench
illness behaviour

"a process of education to address inaccurate and unhelpful
attitudes and beliefs may be a necessary preliminary step

Under "Eligibility for benefits", the authors state "The DSS's
Handbook advises adjudication officers that in CFS there is unlikely
to be a need for assistance with attending to bodily functions or
with mobility. It will be unfortunate if the (Disability
Discrimination) Act leads to an undue focus on long term disability
at the expense of efforts directed at rehabilitation and recovery."

1997

Treating medically unexplained physical symptoms. Effective
intervention available.

EDITORIAL. EDITOR'S CHOICE. (press release). Richard Mayou.
Michael Sharpe. BMJ 1997:315:561-562

"Chest pain, back pain, headache, muscular pains, bowel symptoms,
breathlessness, dizziness and fatigue often remain unexplained after
medical assessment. Such cases may be referred to as functional
syndromes of chronic fatigue or as somatoform disorders. When
symptoms are found not to result from "genuine physical illness",
they are often attributed to mental illness. Evidence for the
superiority of new ways of thinking about and managing such patients
is growing. These new treatments, often referred to as cognitive
behavioural therapies, take an approach in keeping with the evidence
that perpetuation of unexplained somatic symptoms is best understood
in terms of an interaction between physiological processes,
psychological factors and social context.

"This integrative approach (consists of) identifying the principal
factors that perpetuate illness, including misinterpretation of
bodily sensations, abnormalities of mood and unhelpful coping
behaviour.

"Implementation of this new approach will require changes in both
medical practice and the organisation of services. Innovative
service developments such as dedicated liaison psychiatry services
will provide for patients who require more intensive treatment. The
small but conspicuous group of patients who present with recurrent
and multiple physical symptoms will be given co-ordinated care aimed
at limiting unnecessary medical interventions

"If these changes in practice and service provision could improve
patient care, why have they not been implemented? One reason is the
widespread lack of awareness that effective evidence based
treatments are available. There are welcome signs of change, as
evidenced by the recent joint royal colleges' reports".

1998

Cognitive Behaviour Therapy Michael Sharpe. A Research Portfolio on
Chronic Fatigue. Ed: Robin Fox; published by The Royal Society of
Medicine for The Linbury Trust, 1998

"Cognitive behaviour therapy offers patients a new way to think
about their illness. The first application of CBT to chronic fatigue
syndrome was by Wessely and colleagues (who proposed) a vicious-
circle model of the perpetuation of chronic fatigue whereby
patients' beliefs about the illness lead to avoidance of activity
and thus to chronic disability

"Our group (ie. the Wessely School) wanted to develop the
behavioural approach and the fist step was to gain a systematic
view of their beliefs and behaviour

(No mention is made about obtaining a systematic view of patients'
brain perfusion patterns, or of their immune status, or of their
neuroendocrine function)

"CBT helps patients to re-evaluate their beliefs (and) encourages
them to change their behaviour. Change in the belief is an important
factor in recovery.

"The trials of CBT have shown that 'psychological' treatment is
effective in patients with CFS. (CBT) is currently the most
effective treatment we have for CFS."

1998

Doctors'Diagnoses and Patients' Perceptions: Lessons from Chronic
Fatigue Syndrome

EDITORIAL Michael Sharpe. Gen Hosp Psychiat 1998:20:335-338

"For many patients, the more clearly 'biomedical' the diagnosis is,
the more likely they are to welcome it

"These patients want a medical diagnosis for a number of reasons.
First, it allows them to negotiate reduced demands and increased
care from family, friends and employer. Without such a diagnosis,
the patient is open to the social stigma of psychiatric illness. In
short, (a biomedical label) admits them to a bona fide 'sick role'.
Second, it may open the way for practical help in terms of financial
and other benefits from government, employers and insurers

"Why are many physicians reluctant to provide a medical diagnosis?
(Because) to make such a diagnosis, especially if it is suggested by
the patient, may risk the censure of peers

"The application of (a psychiatric diagnosis) may give the physician
the satisfaction of having applied a label of which most of his
peers would approve. The problem is that many patients not only
fail to accept this diagnosis but respond to it with frank hostility
because a psychiatric diagnosis may offer lower financial benefits

"For many patients, obtaining an acceptable diagnosis becomes their
main preoccupation."

1999

ME. What do we know (real physical illness or all in the mind?)

Lecture given in October 1999 by Michael Sharpe, hosted by the
University of Strathclyde

"In my lecture this evening, I would like to talk to you about
myalgic encephalomyelitis (ME), also known as chronic fatigue
syndrome or CFS (which) for convenience I will refer to as CFS.

"We know that in the majority of cases CFS can be effectively
treated. CBT has been shown to have substantial benefits for
patients with CFS (and) can reduce disability in most patients.

"I shall argue that patients themselves have played a part in
denying themselves this type of treatment

"Despite a lot of media comment and much hypothesising relating CFS
to modern concerns such as toxic exposures, there is very clear
evidence that a condition which appears identical caused similar
concerns a hundred years ago (and) the causes were thought to lie in
the concerns of that time namely, the changing role of women..in our
time it is allergy and toxins.

"The conventional wisdom is that illnesses are made real when they
are legitimised by a doctor's diagnosis

"Does CFS have biology? Yes -not conventional disease pathology

"The majority of patients with CFS have no doubt how they prefer
their conditions to be seen..the vehemence with which many patients
insist that their illness is medical rather than psychiatric has
become one of the hallmarks of the condition.

"Clinically, it appears that interpersonal stress appears to be a
major factor giving rise to development of CFS

"Over-solicitousness and the reinforcement of unhelpful illness
beliefs can have an unhelpful effect on patients' attitude and coping

"Purchasers and Health Care providers with hard pressed budgets are
understandably reluctant to spend money on patients who are not
going to die and for whom there is controversy about the "reality"
of their condition (and who) are in this sense undeserving of
treatment.

"Those who cannot be fitted into a scheme of objective bodily
illness yet refuse to be placed into and accept the stigma of mental
illness remain the undeserving sick of our society and our health
service."

2000

Insurance Medicine. Chronic fatigue syndrome and its management. Dr
Michael Sharpe, University of Edinburgh. Conference rapporteur: Ian
Cox MA MRCP, Chief Medical Officer, Prudential UK, Reading. JRCP
2000:34:394-396

"Psychosocial factors are important in CFS. Prognostic factors
include family factors and social factors; work could also mitigate
against a full recovery.

"Reports from doctors for employers, insurance companies and benefit
agencies could reinforce beliefs and behaviour to delay full
recovery.

"The belief that there is no treatment is incorrect; correcting
obvious misconceptions about the disease process and avoiding
unnecessary investigations all help patients.

"Cognitive behaviour therapy caused improvement in 60% of patients
with CFS

"Secondary prevention (ie. preventing chronicity) includes early
identification and treatment; keeping the individual in contact with
the workplace helps to reduce the chronic problems.

"There was general agreement that all doctors have a responsibility
to aid their patients' return to employment.

"Social attitudes and differing health beliefs can slow down or even
prevent a return to work and such beliefs are increasingly being
promulgated through the media and doctors have to be aware of these
issues.

"The problem of communication between doctors and insurers or
benefits agency personnel were discussed throughout the meeting,
which was an excellent first step towards improved links between the
Royal College and doctors working in insurance and benefit agencies".

End

Posted by peter200015 at 11:10 AM EAST
Post Comment | Permalink
Tuesday, 20 January 2004
ME/CFIDS/CFS/FM UK Scandal
continuing from Jan 19
page1 Jan17, page2 Jan18, page3 jan19

AppendixI:
Quotations from the published works of Professor Simon Wessely on
ME/CFS

1988

Postviral fatigue syndrome: time for a new approach. David AS,
Wessely S, Pelosi AJ
BMJ 1988:296:696-699

"Future investigations and clinical practice must take into account
the similarities between the symptomatology of the post-viral
fatigue syndrome and that of common psychiatric disorders in the
community"

1989

What your patients may be reading. Wessely S. BMJ 1989:298:1532-
1533

"Beard and Mitchell have returned to obscurity, but their disease
(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".

1989

Management of chronic (post-viral) fatigue syndrome. Simon Wessely,
Anthony David, Sue Butler, Trudie Chalder. Journal of the
Royal College of General Practitioners 1989:39:26-29

"Many patients referred to a specialized hospital with chronic
fatigue syndrome have embarked on a struggle. This may take the form
of trying to find an acceptable diagnosis, or indeed any diagnosis
and may involve reading the scientific literature. One of the
principal functions of therapy at this stage is to allow the patient
to call a halt without loss of face. [ME patients are in] a vicious
circle of increasing avoidance, inactivity and fatigue. The patient
should be told that it is now time to 'pick up the pieces' (and) the
process is a transfer of responsibility from the doctor to the
patient, confirming his or her duty to participate in the process of
rehabilitation in collaboration with the doctor. Occasionally
patients may say they cannot take drugs (but) there is no clinical
evidence that allergies exist in anything but a small number of
sufferers, and their existence may be coincidental. Anxiety is often
part of the syndrome (and) sexual problems occur in the majority of
patients referred to hospital. The notion of allergies reinforce the
view that the sufferer is under attack from outside elements which
have nothing to do with himself or herself".

1990

Attribution and self-esteem in depression and Chronic Fatigue
Syndrome. R Powell, R Dolan, S Wessely. J Psychosom Res
1990:34:6:665-673.

"This research shows that in CFS, (patients) experience less guilt:
such an external style of attribution has certain advantages;
external attribution protects the patient from being exposed to the
stigma of being labelled psychiatrically disordered, (affording)
diminished responsibility for one's own health. Our results are
close to those predicted by 'learned helplessness'. Inappropriate
referrals to physicians can lead to extensive physical investigation
that may then perpetuate the symptom pattern of physical attribution"

1990

Chronic fatigue and myalgia syndromes. Wessely S. In:
Psychological Disorders in General Medical Settings. eds: N
Sartorius et al pub: Hogrefe & Huber 1990

"Most CFS patients fulfil diagnostic criteria for psychiatric
disorder. Symptoms include muscle pain and many somatic symptoms,
especially cardiac, gastrointestinal and neurological. Do any of
these symptoms possess diagnostic significance? The answer is
basically negative. It is of interest that the 'germ theory' is
gaining popularity at the expense of a decline in the acceptance of
personal responsibility for illness. Such attribution conveys
certain benefits, in other words, there is avoidance of guilt and
blame. It is this author's belief that the interactions of the
attributional, behavioural and affective factors is responsible for
both the initial presentation to a physician and for the poor
prognosis".

1990

Old wine in new bottles: neurasthenia and ME. Simon Wessely.
Psychological Medicine 1990:20:35-53

"It is assumed that ME is an organic disorder of the peripheral or
central nervous system. In the initial reports this was indicated
by frank neurological signs (but) the concept of ME has shifted.as
in neurasthenia, the emphasis is on muscle fatiguability..in a
current leading neurology text book (Adams and Victor, 1985) chronic
fatigue, neurasthenia and depression are seen as synonymous. Mood
disorder is found in many cases of ME but it is not the only
psychiatric disorder (and) some patients do satisfy the criteria for
anxiety and phobic disorders.Beard's neurasthenia began as a
physical disease.it provided the most respectable label for
distressing, but not life-threatening complaints, one that conferred
many of the benefits - and fewest of the liabilities- associated
with illness..it was preferable to the alternatives ---
hypochondria, malingering and insanity. There is little evidence of
any change in the current era. Suggestible patients with a tendency
to somatize will continue to be found among sufferers from diseases
with ill-defined symptomatology until doctors learn to deal with
them more effectively. The social processes that govern the
creation of such illnesses remain obscure but one may argue that
they represent culturally sanctioned expressions of distress. It
has been shown that some patients have always preferred to receive,
and well-meaning doctors to give, a physical rather than a
psychological explanation for ill-defined illnesses associated with
fatigue. Such uncritical diagnoses may reinforce maladaptive
behaviour".

1990

Possible ME. Simon Wessely. The Practitioner 8 March 1990:234:195-
198

"ME is a description, not a diagnosis".

1990

The chronic fatigue syndrome-myalgic encephalomyelitis or postviral
fatigue.
S.Wessely PK Thomas. In: Recent Advances in Clinical Neurology.
ed: Christopher Kennard. pub: Churchill Livingstone 1990 pp85-131

"There is no doubt that at least half of CFS patients have a
disorder of mood. The management of affective disorders is an
essential part of the treatment of CFS/ME. Numerous trials attest
to the efficacy of tricyclic antidepressants in the treatment of
fatigue states. Patients who fail to respond should be treated
along similar lines to those proposed for treatment-resistant
depression, especially (with) lithium".

1991

Editorial. Wessely S. Journal of Neurology, Neurosurgery and
Psychiatry 1991:54:669-671

"Studies of dynamic muscle function have demonstrated essentially
normal muscle strength, endurance and fatigability, other than as a
consequence of physical inactivity. Advice that antidepressants may
be counter-productive is misguided".

1991

Cognitive behaviour therapy in chronic fatigue syndrome. Butler S,
Chalder T, Ron M, Wessely S. JNNP 1991:54:153-158

"Continuing attribution of all symptoms to a persistent 'virus'
preserves self-esteem".

1991

The psychological basis for the treatment of CFS. Wessely S. Pulse
of Medicine 14th December 1991:58

"The prognosis may depend on maladaptive coping strategies and the
attitude of the medical profession".

1992

The epidemiology of fatigue: more questions than answers. Lewis G,
Wessely S. Journal of Epidemiology and Community Health 1992:46:92-97

"We suggest that many patients currently labelled as having 'CFS'
may lie at the extreme end of a continuum that begins with the
common feeling of tiredness. Studies usually find a high prevalence
of psychiatric disorder amongst those with CFS, confirming that
physicians are poor at detecting such disorders".

1992

Chronic fatigue syndrome: current issues. Wessely S. Reviews in
Medical Microbiology
1992:3:211-216.

"Validation is needed from the doctor. Once that is granted, the
patient may assume the privileges of the sick role (sympathy, time
off work, benefits etc)"

On 10th January 1992 Wessely wrote a letter to Dr Mansel Aylward at
the Department of Social Security in which he stated

"It is certainly true that I and my colleagues consider that anxiety
about the consequences of activity is one of the factors
perpetuating disability in CFS. I have previously been involved in
advising the DSS that CFS should not be grounds for permanent
disability".

Following Wessely's advice, the 1994 Disability Living Allowance
Handbook entry on CFS states "The general consensus of informed
medical opinion is that treatment should be by graded exercise and
rehabilitation (and) antidepressant drugs may be helpful".

1993

The psychology of multiple allergy. LM Howard, S Wessely.
BMJ:1993:307:747-748.

"Many people present to their doctor with multiple unexplained
symptomatology which they attribute to allergy. Those at the
extreme end of this range often attract a diagnosis of total allergy
syndrome, multiple chemical sensitivity, or environmental illness.
A recent study confirmed that psychological symptoms were a central
component of chemical sensitivity. Inherent in the concept of
allergy is the avoidance of any blame. Sufferers from allergies
feel no guilt about their condition and are not subject to moral
sanction. Sufferers from mysterious condition that lie outside
conventional medical practice no longer consider themselves to be
oppressed by spirits and demons but by mystery gases, toxins and
viruses. This is particularly visible in the changing nature of
mass hysteria".

1994

Patients with medically unexplained symptoms. Alcuin Wilkie, Simon
Wessely. British Journal of Hospital Medicine: 1994:51:8:421-427

" 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".

1994

Population based study of fatigue and social distress. Pawlikowska
T, Chalder T, Wallace P, Wright DJM, Wessely S. BMJ 1994:308:763-
766

"In recent years, fatigue has attracted renewed attention, largely
because of the prominence given to the chronic fatigue syndrome.
The infective characteristics may be the result of referral patterns
and illness behaviour. The chronic fatigue syndrome may represent a
morbid excess of fatigue rather than a discrete entity. The
definition may have arisen as a result of referral patterns to
specialists. Muscle pain was related to psychological morbidity".

1994

The patient with chronic fatigue. Simon Wessely et al West of
England Medical Journal

"The aims of treatment were to provide alternative explanations for
symptoms. The methods chosen included the use of established
techniques to treat depression, namely, dothiepin".

1994

A cognitive-behavioural approach to chronic fatigue syndrome.
Alicia Deale Simon Wessely The Therapist 1994:2;1:11-14

"Behavioural, attributional and cognitive factors are central to the
perpetuation of fatigue. It is important to note that the rates of
depression and anxiety in CFS are far too high to be explained
solely as reactions to chronic illness".

1995

Psychiatry in the allergy clinic: the nature and management of
patients with non- allergic symptoms. LM Howard, S Wessely.
Clinical and Experimental Allergy 1995:25:503-514.

"Many doctors are frequently consulted by patients with persistent
unexplained symptoms attributed to allergy or chemical sensitivity.when
patients are told there is no evidence of any underlying
immunological or allergic cause, they can be difficult to manage.
In some cases patients claim allergy to almost all of the
environmental products of the Western world. The illness is
usually sporadic but epidemics have been described. Such epidemics
overlap with the related subject of mass psychogenic illness, a term
which has partly replaced mass hysteria. The epidemiology of
environmental illness is reminiscent of the difficulties encountered
in distinguishing between the epidemiology of myalgic
encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an
operationally-defined syndrome. [ Note: The World Health
Organisation does not regard ME as " a belief", but as a
neurological disorder ]. These patient populations recruited from
the environmental subculture are a subgroup of patients who can be
expected to show unusually strong beliefs about the nature of their
symptoms, associated with a high prevalence of psychiatric
disorder. These patients typically resist any attempt to discuss
the possibility of a psychological cause. Somatization sufferers
consume vast amounts of health resources for little benefit.
Between a quarter and a half of new patients attending medical
clinics do not have an organic explanation for their symptoms,
(receiving) a diagnosis of chronic fatigue syndrome. The risk of
psychiatric diagnosis is known to increase linearly with the number
of symptoms with which the patient presents. Attribution of
unexplained symptoms to a "virus", as happens in most patients with
the label of ME, may preserve self-esteem and protect against the
stigma of psychiatric disorder. These total allergy syndromes are
akin to culture-bound syndromes afflicting modern developed
societies where sufferers from unexplained symptoms no longer see
themselves as possessed by devils or spirits but instead by gases,
toxins and viruses. When a psychiatric disorder is not recognised,
patients are often investigated extensively for organic disease;
there are hazards in these inappropriate investigations, as
patients' beliefs in organic pathology are reinforced. Further
investigations will add nothing to the management but will reinforce
the patient's beliefs in organic pathology (and) add to the cost of
the consultation. Patients will benefit from training in cognitive
coping skills; (and some) patients should be treated with
psychotropic drugs. Liaison between the physician and the liaison
psychiatrist is necessary so that patient acceptance of psychiatric
referrals can be facilitated".

1996

Chronic fatigue syndrome: an update. Anthony J Cleare, Simon C
Wessely. Update 1996:14 August:61.

" Chronic fatigue may be better understood by focusing on
perpetuating factors and the way in which they interact in self-
perpetuating vicious circles of fatigue, behaviour, beliefs and
disability. 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".

1996

Chronic fatigue syndrome: a stress disorder? Anthony J Cleare
Simon C Wessely
British Journal of Hospital Medicine: 1996:55:9:571-574

"Between half and two thirds of patients with CFS have a co-morbid
psychiatric disorder".

1997

Chronic fatigue syndrome: a practical guide to assessment and
management. Sharpe M, Chalder T, Wessely S et al General Hospital
Psychiatry 1997:19:3:185-199.

" The majority of patients seen in specialist clinics typically
believe that their symptoms are the result of an organic disease
process, and resent any suggestion that they are psychological in
origin or psychiatric in nature. Many doctors believe the
converse. (Patients') beliefs are probable illness-maintaining
factors and targets for therapeutic intervention. Many patients
receive financial benefits and payment which may be contingent upon
their remaining unwell. Gradual recovery may therefore pose a
threat of financial loss. Abnormal physical signs should not be
accepted as compatible with a diagnosis of CFS. The only treatment
strategies of proven efficacy are cognitive behavioural ones. We
have developed a more intensive (CBT) therapy (which) is acceptable
to patients, safe, and more effective than either standard medical
care or relaxation therapy. It has also been shown to be cost-
effective. An important task of treatment is to return
responsibility to the patient for management and rehabilitation
without inducing a sense of guilt, blame or culpability for his /
her predicament".

1998

Clinics in Controversy: Chronic Fatigue Syndrome.
Anthony J Cleare Simon C Wessely. Update 20 May 1998:1016-1026.

"CFS may be better understood as the extreme end of a spectrum that
starts with 'feeling

tired all the time'. Many people suggest that the condition should
be called ME, but doctors and the editors of journals have taken a
firm stand against this label. The GP's response may be important.
A sick note and unclear diagnosis are both associated with
development of CFS".

1999

Functional somatic syndromes: one or many? S Wessely, C Nimnuan, M
Sharpe. Lancet 1999:354:936-939.

" We postulate that the existence of specific somatic syndromes is
largely an artefact of medical specialisation. That is to say that
the differentiation of specific functional (ie. psychiatric)
syndromes reflects the tendency of specialists to focus on only
those symptoms pertinent to their speciality, rather than any
real differences between patients.Various names have been given to
medically unexplained symptoms. These include somatisation, somatoform
disorders.and functional somatic symptoms.we define a functional
somatic symptom as one that, after appropriate
medical assessment, cannot be explained in terms of a conventionally
defined disease. Functional somatic syndromes pose a major
challenge to medicine. Those symptoms are associated with
unnecessary expenditure of medical resources. Chronic fatigue
syndrome is associated with worse disability than conditions such as
heart failure. three quarters of patients had symptoms more than 10
years after presentation. Thus, functional somatic complaints
constitute a large.and costly health-care issue that urgently
requires improved management. Many of these (functional somatic)
syndromes are dignified by their own formal case definition and body
of research. We question this orthodoxy and ask whether these
syndromes represent specific diagnostic entities (eg. irritable
bowel syndrome, premenstrual syndrome, fibromyalgia,
hyperventilation syndrome, tension headaches, globus hystericus,
multiple chemical sensitivity, chronic fatigue syndrome) or are
rather more like the elephant to the blind man --- simply different
parts of a larger animal?..Such patients may have variants of a
general functional somatic syndrome. If we accept that functional
somatic syndromes are considered together, we open the way for more
general strategies for their management..Functional somatic symptoms
and syndromes are a major health issue. They are common, and
may be costly. Most of the current literature pertains to
specific syndromes. We have put forward the hypothesis
that the acceptance of distinct syndromes as defined in the medical
literature should be challenged. We contend that the patients so
identified.have much in common.We propose an end to the belief that
each different syndrome requires its own particular sub specialist.A
previous generation of physicians noted overlaps
between "psychosomatic syndromes". Unfortunately, none of these
theories were accompanied by empirical support and consequently have
disappeared from our current thinking. We argue that their re-
instatement is overdue".

2000

Responding to Mass Psychogenic Illness. Editorial: Simon Wessely.
The New England Journal of Medicine 2000:342:2:129-130

"Such outbreaks are not novel. In a previous era, spirits and
demons oppressed us. Although they have been replaced by our
contemporary concern about invisible viruses, chemicals and toxins,
the mechanisms of contagious fear remain the same. The
term 'psychogenic illness' and its predecessor 'mass hysteria'
exemplify the problem. To the majority of observers, including most
professionals, these symptoms are indeed all in the mind. It is now
commonplace to blame our environment for many of our ills. Should
we investigate at all? How do you convey the message that the main
mechanisms for the transmission of distress are psychosocial and
behavioural? A firm public message that certain symptoms are
probably psychological in origin will probably help prevent their
spread".

2001

Chronic fatigue syndrome: Symptom and Syndrome. Wessely S. Annals of
Internal Medicine 2001:134: 9S:838-843

"Social, behavioural and psychological variables are important in
both chronic fatigue and chronic fatigue syndrome. The lack of
congruence between the patient's report of feeling tired and
exhausted and objective measures of fatigability further frustrate
clinicians and investigators. Compelling evidence of abnormal
neuromuscular fatigability in patients with the chronic fatigue
syndrome is lacking. Fatigue can be related to psychological
variables such as belief and expectation. Some of the desire to
split the chronic fatigue syndrome into subgroups is driven by
emotion. It is interesting to note how some of those who advance
this argument assume that "their" condition (the one they suffer
from, research or treat) will fall on the physical side of the
divide. The greater the number of symptoms and the greater the
perceived disability, the more likely clinicians are to identify
psychological, behavioural or social contributors to illness. The
pressure to reify the chronic fatigue syndrome comes from the way in
which the developed world organizes medical services and
reimbursement systems. Some of the modern impetus to 'allow' a
specific chronic fatigue syndrome arises from the various
compensation and social insurance schemes operating in developed
countries. If the chronic fatigue syndrome did not exist, our
current medical and social care systems might force us to invent
it. Other symptoms identified in the chronic fatigue syndrome
(include) increased symptom-monitoring and increased anxiety".

In correspondence arising from this paper, Wessely wrote "I can
sleep easy at night when it comes to treatment. I know that we have
done more good than harm. You mention the views of Paul Cheney, but
I must say I disagree profoundly with them - and more importantly,
so does every neurologist I have ever met. All I know is that I am
quietly proud of what our group has achieved over the years".

2001

How many functional somatic syndromes? C Nimnuan, S Rabe-Hesketh,
Simon Wessely, Matthew Hotopf. Journal of Psychosomatic Research
2001:51:4:549-557

"Experiencing symptoms is part of normality. Most of these symptoms
are not associated with clear-cut biomedical diagnosis and are then
referred to as "medically unexplained" or "functional". Functional
somatic symptoms are an important problem in general medicine on
account of the high associated consumption of health service
resources. Such symptoms may be elevated to the status of a
syndrome to which a specific name is attached. These include
irritable bowel syndrome, pre-menstrual pain, fibromyalgia and
chronic fatigue syndrome. Physicians instinctively seek and treat
only conditions they know well. Patients may be seen in several
clinics, which increases the risk of over-investigation. We argue
that such an approach is outdated. Instead, an appreciation of the
fundamental unity of those syndromes may reduce the potential for
iatrogenic harm ".

2002

Modern worries, new technology, and medicine Keith Petrie
Simon Wessely
Editorial: BMJ 2002:324:690-691

" People's suspicion of modernity has increased to such an extent
that it has increased their worries about environmental causes of
poor health and fostered a migration to complementary medicine. We
believe that these concerns have important implications for the way
patients interact with health services. In clinical settings
patients are reluctant to start medication for fear of
putting 'unnatural chemicals' into their body. At the same time the
consumption of unproved herbal and alternative 'natural' remedies is
increasing. This anxiety is reflected in the presentation of
psychosomatic illness: the number of illnesses attributed to
environmental factors --- for example, multiple chemical
sensitivity, total allergy syndrome --- has increased. Normal
everyday symptoms such as headache and fatigue are now more easily
interpreted as signs of disease or ill health. Attributions made by
patients about the cause of their illness often involve
environmental pollution, and they see the effects of modern life as
undermining the effectiveness of their immune system. Distrust of
experts is now commonplace, and at its extreme it can merge into the
conspiratorial thinking that is part of a modern paranoid style.
Mismanaged environmental incidents add to the fear of the public.
New and unsubstantiated health worries can be instantly transmitted
to an internet audience eagerly seeking information on health, or to
special interest networks such as illness support groups. We
believe it is only a matter of time before a mass psychogenic
illness is identified as being spread electronically".

2003

Managing patients with inexplicable health problems. B Fischhoff
Simon Wessely
BMJ 2003:326:595-597

"Those with medical mysteries will find some explanation. When a
medical explanation is slow in coming, physicians, officials and
companies often bear the brunt of (patients') anger, for example in
chronic fatigue syndrome and Gulf war sickness, authorities who
denied sufferers' claims met with scorn and contempt. In this
article we discuss how illness beliefs arise and suggest principles
for dealing with patients. It is only human for doctors to view
the public as foolish, uncomprehending, hysterical or malingering.
One challenge arises when patients have named their condition in a
way that leaves doctors uncomfortable, as occurred with chronic
fatigue syndrome. It may seem that adopting the lay label
reinforces the perceived disability. A compromise strategy
is 'constructive labelling': it would mean treating chronic fatigue
syndrome as a legitimate illness while gradually expanding
understanding of the condition to incorporate the psychological and
social dimensions. The recent adoption by the UK Medical Research
Council and the chief medical officer's report of the term CFS/ME
reflects such a compromise, albeit it an uneasy one".

2003

Medically unexplained symptoms: exacerbating factors in the doctor-
patient encounter.
LA Page, S Wessely Journal of the Royal Society of Medicine
2003:96:223-227

"This paper proposes that well-intentioned actions by medical
practitioners can exacerbate or maintain medically unexplained
symptoms (MUS). This term is now used in preference
to 'somatisation'. The medical specialties employ shorthand
descriptions for particular clusters of MUS, including irritable
bowel syndrome, fibromyalgia and chronic fatigue syndrome. Examples
of precipitating events include muscle ache after unaccustomed
exercise. As one expert notes, 'It is a commonplace clinical
observation that somatising patients --- more than any other group --
-resent psychiatric referral'. Once a patient feels discredited,
the opportunity to explore psychosocial factors is lost. For
patients with MUS, the sensory experiences tend to outweigh the
negative results of a doctor's examination or investigations. Thus
one sees how the cycle of excessive investigation can begin. If
enough investigations are performed, minor and irrelevant
abnormalities will be detected and themselves become hypothesis-
generating. Reassurance is particularly important in patients who
have hypochondriasis or MUS. The adoption of a label such as CFS
affords the sufferer legitimacy --- in other words, it allows entry
into the 'sick role'. The external acknowledgement that the
condition is 'legitimate' is both reassuring and enabling. However,
the conferring of a label is not a neutral act, since specific
labels are associated with specific beliefs and attitudes. In CFS
for example, use of this term or the alternative 'myalgic
encephalomyelitis' implies underlying assumptions about aetiology
and treatment for both patients and doctors. (In relation to
treatment), there is evidence to suggest that harm occurs at the
hands of non-medical practitioners (who) colluded with patients'
abnormal illness beliefs. If sections of the media advocate an
exclusively organic model, as has happened with CFS, the biomedical
model may become firmly enshrined for patients and families at the
expense of psychosocial models. Clearly there are implications for
the way doctors are taught to assess and treat these patients".

Only by assembling and distributing the great wealth of published
medical and scientific evidence which shows unequivocally that
Wessely and his like-minded psychiatrists are wrong is there any
hope of refuting their erroneous assertions and of limiting the
unquantifiable damage that flows from them.

Both the ME Association and Action for ME were set up as charities
to promote and protect the interests of their members, ie. those
suffering from ME (and the term is incorporated into their
charitable status). Neither currently does so, since the Chief
Executives of both charities seem only too happy to subscribe to the
Wessely School view (which ensures continued Government funding).

A Co-cure (internet) posting by Jill McLoughlin expresses the nature
of the problem succinctly:

"It is because our medical community, professional societies and
public health officials have not adequately gathered together,
assimilated, integrated and made public the strong body of research
pointing to the serious physical (not psychological) nature of this
illness".

Cont/ jan 21

Posted by peter200015 at 4:24 PM EAST
Updated: Saturday, 7 August 2004 3:00 PM EADT
Post Comment | Permalink
Monday, 19 January 2004
ME/CFS/CFIDS Scandal UK
continuing from Jan 18
Page1 Jan17, Page2 Jan18

ACT: Part 3/3: THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?
{List owner note: Comments made in respect of the Chief Executive,
management and policies of the MEA would have been made prior to
election of a new Board of Trustees at the MEA's AGM in December
2003.]

The CMO's Working Group Report on "CFS/ME"

It was as a result of the obvious bias and mis-information which the
Joint Royal Colleges' Report contained that the CMO set up the
supposedly "independent Working Group" in 1998, whose Report was
published in January 2002. Sadly, its membership was far
from "independent" and was dominated by the Wessely School
psychiatric lobby including Simon Wessely himself, Peter White,
Anthony Cleare and Trudie Chalder, supported by child psychiatrist
Elena Garralda and Harvey Marcovitch (a paediatrician and editor of
Archives of Disease in Childhood and well-known for his article in
the BMJ following the Panorama programme in November 1999, in which
he wrote "BBC's Panorama performed a hatchet job on Dr Michael
Prendergast, a child psychiatrist (who) uses active rehabilitation
as a treatment for chronic fatigue syndrome. It's about time the
(medical) profession hit back at those who are vilifying our
colleagues").

The Working Group was partly funded by the Linbury Trust, which
since 1991 has financially supported the Wessely School
psychiatrists and their studies of "chronic fatigue". The Linbury
Trust is one of the Sainsbury supermarket family trusts: since 1996
David Sainsbury (now Lord Sainsbury of Turville) has donated over
#11 million to the UK Labour Party and he became Minister for
Science, responsible for the Office of Science and Technology as
well as for the chemical and biotechnology industries, and for the
Research Councils, including the Medical Research Council. The
Office of Science and Technology monitors all government funding of
research grants and controls official science policy, and it
is "policy" which determines the research to be funded.

Undeclared competing interests relevant to the CMO's Working Group
Report

The involvement of the Linbury Trust with the CMO's Working Group
was made public from the outset but apart from Wessely's close
association with the Linbury Trust, there are other areas related to
ME/CFS in which he is known to have special interests which he
usually does not declare; certainly none of his other competing
interests was made public in the CMO's Working Group Report
documents:

The disability insurance industry

Wessely School psychiatrists who claim to be specialists in "CFS"
(especially Wessely himself, Mike Sharpe, Peter White and Anthony
Cleare) are known to have indisputable commitment to the insurance
industry and act as medical advisors to it. Many illustrations
could be provided. On 17 May 1995 both Wessely and Sharpe were the
main speakers at a symposium held at the London Business School
entitled "Occupational Health Issues for Employers" at which they
advised employers how best to deal with employees who are on long-
term sickness absence with "ME". Wessely spoke on the "myths" of
ME; Sharpe spoke about the use of anti-depressants and cognitive
behavioural therapy, and Trudie Chalder spoke about "selling the
treatment to the patient". Information presented included informing
attendees that ME/CFS has also been called "the malingerer's
excuse". Another speaker at this conference was Dr John le Cascio,
Vice President of UNUM.

Three extracts from a copy of UNUM's "Chronic Fatigue Syndrome
Management Plan" seem significant: (i) Diagnosis: Neurosis with
a new banner (ii) UNUM stands to lose millions if we do not move
quickly to address this increasing problem (iii) attending
physicians (must) work with UNUM rehabilitation services in an
effort to return the patient / claimant back to maximum
functionality with or without symptoms.

Other insurance companies known to be involved in ME/CFS claims
include, in addition to UNUM, Swiss Life, Canada Life, Norwich
Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and
Permanent Insurance, and as Re-insurers, the massive Swiss Re (not
the same as Swiss Life). These insurance companies all seem to be
involved in re-insurance; for example, Norwich Union uses Swiss Re
as re-insurer and psychiatrist Peter White is one of the Chief
Medical Officers for Swiss Re. Their other "CFS experts" are
Michael Sharpe and Simon Wessely, and they also use psychiatrist
Anthony Cleare (a frequent co-author with Wessely).

This means that there is little hope of an ME claim succeeding,
because both the insurers and the re-insurers all use the Wessely
School psychiatrists to inter-refer claimants with ME/CFS. Given
that insurers can refuse to pay out on claims until the claimant
with ME/CFS has undergone a "rehabilitation" programme arranged by
the insurer, this must surely result in a major conflict of
interests because Peter White, Michael Sharpe and Wessely's
assistant Trudie Chalder are the beneficiaries of the MRC's latest
#2.6 million grant to them (see below).

The reliance by insurance companies upon these psychiatrists in
cases of ME/CFS has resulted in an insurance scandal of epic
proportions. Just two illustrations are provided here, taken from
signed Statements of ME patients:

(i) Extract from Statement of Kevin Robinson

"In 1999 Peter Denton White was Chief Medical Officer for Swiss Re
and worked for them on Thursday mornings. I also have evidence that
Michael Sharpe worked for them. I see it as a conflict of interest
for Peter White and Michael Sharpe to work for a re-insurer with
exposure to ME claims, and believe that it totally undermines the
credibility of their research. The insurers proposed firstly
Michael Sharpe and secondly Peter White as joint experts, but being
warned about both, I refused to be examined by them. I now know
that immediately before the insurer had proposed Michael Sharpe, the
insurer had got him to write a report about me without ever meeting
me. My main concern is not that he wrote a report without seeing
me, but the fact that when he was proposed as expert, the insurer
already knew that he believed that I should not be paid. The only
reason that the existence of Michael Sharpe's report came to light
was that it is listed in the sources for the report of Anthony
Cleare, who I did see for the insurer. The insurers were very
determined that I should see Michael Sharpe. In addition to using a
doctor who was not independent because he worked for the re-insurer,
and getting his opinion before proposing him as a supposedly
independent expert, the insurer put great pressure on me to accept
this "expert". There is no doubt that they were very determined
that they wanted me to see Dr Sharpe".

(ii) Extract from Statement of Robert Sclater

"I have suffered from ME/CFS for over ten years and have an
insurance policy with Allied Dunbar. During the course of my
illness I have been asked by them to attend medical examinations
about every two years which has never been a problem until now. On
this occasion I was asked to see Dr Michael Sharpe who I know,
through my dealing with the Cross Party Group on ME in the Scottish
Parliament, to have opinions which could prove harmful to me when
being assessed. It is well-documented that Dr Sharpe has on many
occasions lectured to insurance companies (and) that he advises that
those with ME/CFS who are seeking payment of benefit under their
policies should not qualify for such payments. At a meeting at the
Royal College of Physicians in February 2002 Dr Sharpe is believed
to have advised that he was recommending to insurance companies that
claimants with ME/CFS should be subject to covert video
surveillance. These comments do not appear to me to be those of an
impartial medical assessor. It seems to me that Dr Sharpe should
not be paid by an insurance company who he directly or indirectly
advises the non-payment of claims for people with ME. This is
surely a conflict of interest. For this reason, I contact the
Members of the Scottish Parliament that I knew would be interested
in my case. I am happy to say that they shared my opinion (and)
they wrote letters of support for me. Dr Sharpe has asked the MSPs
to retract their statements to Allied Dunbar regarding his
suitability to give an unbiased view when assessing people who
suffer from ME/CFS".

Members of Parliament are on record as being gravely concerned about
the difficulties which their constituents with ME/CFS suffer at the
hands of the disability insurers, as recorded in the House of
Commons debate chaired by Sir Alan Haselhurst on 21st December 1999
(reference: Hansard 147WH-166WH). In particular, Members of the
Scottish Parliament are very aware of the involvement of Mike Sharpe
with the insurance industry and with the processing of claims due to
ME/CFS and are extremely concerned about the situation.

Another such competing interest in which Wessely is involved is
PRISMA, which stands for Providing Innovative Service Models and
Assessments. There are two such bodies with the identical title,
but one is based in Germany and is a multi-national healthcare
company working with insurance companies; it arranges rehabilitation
programmes for those with "CFS" and its recommended management is
cognitive behavioural therapy, placing heavy emphasis on training
sufferers to "regain a normal life again". PRISMA claims to be
especially concerned with long-term disability from the perspective
of government, service providers and insurance companies. It claims
to have developed a "unique treatment programme" for "hopeless"
cases (it specifically includes those with ME/CFS), claiming that
such patients "avoid physical exercise and social activities, as
they fear these may trigger new bouts of complaints". In the PRISMA
Company Information, Professor Simon Wessely is listed as a
Corporate Officer. He is a member of the Supervisory Board; in order
of seniority, he is higher than the Board of Management. He is
listed as a "world expert" in the field of "medically unexplained
illnesses, including Chronic Fatigue Syndrome". Is it possible that
Wessely recommended to the Chief Medical Officer a management
programme for "CFS/ME" which is known to be harmful for those with
ME/CFS and which is provided by a company of whose Supervisory Board
he is a member?

In his contribution entitled "Functional Symptoms and Syndromes:
Recent Developments" in UNUM's Report "Trends in Health and
Disability 2002", Mike Sharpe stated about (ME) CFS:

"The majority will meet the criteria for depressive or anxiety
disorders and most of the remainder for somatisation disorders of
which hypochondriasis and somatoform disorder have most clinical
utility. The psychiatric classification has important treatment
implications. The current system of state benefits, insurance
payment and litigation remain potentially major obstacles to
effective rehabilitation. Patient groups who champion the interests
of individuals with functional (psychiatric) complaints are
extremely effective in lobbying politicians. The ME lobby is the
best example. It may be difficult for those who wish to champion
rehabilitation and return to work to 'hold the line' (but) it will
be imperative that health and social policy address this problem.
This will not be easy. However, there are glimmers of progress. One
of the major charities (Action for ME) is aligning itself with an
evidence-based approach. Funding of rehabilitation by commercial
bodies has begun in the UK with organisations such as PRISMA and is
likely to continue. An increased availability of rehabilitative
treatment facilities is highly desirable. Both health services and
insurers need to take a more positive approach".

Another area with which Wessely is known to be involved is the
organisation now called HealthWatch, but which used to be called The
Campaign Against Health Fraud. HealthWatch is a campaigning
organisation which in the past has accepted funding from both
pharmaceutical companies and the health insurance industry. In the
Campaign's own literature, it states that it plans a programme of
public information and that its aims are "to oppose.unnecessary
treatment for non-existent diseases". The same document lists Simon
Wessely as a "leading member of the campaign", together with other
doctors and psychiatrists who are members of the Wessely School. It
is the case that Wessely asserts that ME is a "non-existent"
disease. This UK organisation, now a charity, is known for its
zealous views which are antagonistic towards alternative and
complementary medicine, and towards those who believe in
environmental and chemically-induced illness, including ME and
multiple chemical sensitivity. One of its founders, medical
journalist Caroline Richmond, has a long track record of publishing
her contempt for those with ME and of denying the reality of the
disorder. Nick Ross of Crimewatch is another founding member. To
some people's surprise, Dr Charles Shepherd, formerly Medical
Adviser to the ME Association, is also an active member: when
Professor Malcolm Hooper made this known in the context of querying
undeclared competing interests by those on the CMO's Working Group,
Shepherd launched a furious and protracted onslaught upon Hooper and
his co-authors, which involved intimidating letters from the
HealthWatch lawyers and the sending of endless tirades to the Vice
Chancellor of Hooper's university.

Professor Anthony Pinching

One of those who supported the Wessely School view was the Deputy
Chair of the Working Group, Anthony Pinching, who at that time was
Professor of Immunology at St Bartholomew's Hospital, London. He
became notorious for the publication during his tenure of an article
(Chronic fatigue syndrome. Anthony J Pinching. Prescribers' Journal
2000:40:2:99-106 published by the Department of Health itself, but
now discontinued) which caused great distress to the ME community,
in which he made his views clear:

? "over-investigation can be harmful and counter-productive
to the management of these patients, causing them to seek abnormal
test results to validate their illness"

? "patients avoid activity but then develop symptoms of
deconditioning or excessive awareness of physiological changes"

? "cognitive behaviour therapy can substantially optimise
rehabilitation"

? "complementary therapists sometime reinforce unhelpful
illness beliefs"

? "the essence of treatment is activity management and
graded exercise".

Pinching did not even mention ME or the key manifestations of it and
he expressly stated that the fatigue found in CFS is "not related to
ongoing exertion": this was a particularly odious statement because
in ME, there is always post-extertional muscle fatigue, without
which the diagnosis of ME is untenable.

To the consternation of many people with ME, Pinching is now Medical
Adviser to the charity Action for ME, which even changed its logo to
include "chronic fatigue" but was compelled to remove the words and
revert to "Action for ME" by the Charity Commission.

Anthony Komaroff, (who as mentioned above is Associate Professor of
Medicine at Harvard and an undisputed world expert on the disorder)
is on record confirming that "Researchers are already using imaging
technology to measure brain hormones and are examining the function
of the immune system. There is considerable evidence already that
the immune system is in a state of chronic activation in many
patients with (ME)/CFS" (American Medical Association Statement,
17th July 2001), but in the UK, clinicians are advised by the CMO's
Working Group Report that it is inappropriate and unnecessary even
to look for such pathology in those who are thought to have the
disorder: the Report states that the management is to be psychiatric
and that future NHS service provision for "CFS/ME"
patients "ideally would adopt a biopsychosocial model of care (and
that) the components of such a service are facilities for activity
management".

The York Systematic Review of the literature

During the life of the Working Group, a systematic review of the
literature was commissioned from the NHS Centre for Reviews and
Dissemination (CRD) by the Working Group; the CRD is based at the
University of York and is a sibling of the UK Cochrane Centre (part
of the international Cochrane Collaboration), whose Director at the
time was Professor Iain Chalmers, who, with Simon Wessely, was a
member of HealthWatch. Set up in 1994, the NHS Centre for Reviews
and Dissemination aims to provide the NHS with important information
on the effectiveness and cost-effectiveness of treatments and the
delivery and organisation of healthcare and it plays an important
role in disseminating politically correct information throughout the
NHS.

To no-one's surprise, the CMO confirmed in writing that it was
Wessely's own database of over 3000 papers which formed the
substance of that review upon which the CMO's Report would depend
for its "evidence".

The team which carried out the systematic review of the literature
had another team to advise them, since none of them had any clinical
experience of "CFS/ME"; again, to no-one's surprise, the key adviser
on this "advisory" team was Simon Wessely, assisted by Anthony
Pinching and Christopher Clark. At the time, Clark was the new
Chief Executive of the charity Action for ME, who on his own
admission knew nothing whatever about either ME, CFS or about the
literature. It was for this reason that on 28th June 2000 a letter
was sent to the CRD asking what could be his input as an "expert
adviser" to the review team, and how could someone with no knowledge
or experience of the subject contribute to the outcome of a
systematic review of the literature on the management of the
disorder? Would someone with no knowledge be able to supply an
informed and balanced contribution to a review upon which so much
depended for so many very sick people?

A reply was sent on 7th July 2000; it said "The expert panel was
carefully chosen to provide a balanced and representative group..We
wish to make no comment regarding Chris Clark's knowledge or
experience of cfs/me".

Inevitably, the conclusion of the systematic review, published in
September 2001, was that the best "evidence-based" management option
for CFS/ME was cognitive behavioural therapy and graded exercise
therapy. However, it did find that the "evidence" was "weak" and it
advised that further research was required.

The Medical Research Council agrees and has granted #2.6 million
to psychiatrists of the Wessely School (see below).

The conclusions of the CMO's Working Group Report

Right from the outset, when it became known who were the behind-the-
scenes players on the CMO's Working Group, the ME community was
disappointed but unsurprised to learn that the remit of the Group
was notably narrow: it was restricted to just one aspect, namely, to
advising UK clinicians as to "best management practice"
of "CFS/ME". Thus the conclusions of the report were widely
expected to be disappointing, which was the case. The report side-
stepped the vital issue of definition, classification and
terminology, stating "We recognise that no current terminology is
satisfactory, so in line with our original terms of reference, we
have used the composite CFS/ME, acknowledging that CFS is widely
used among clinicians and ME among patients and the community". As
noted above, the CMO's Report repeated the erroneous information in
the Joint Royal Colleges' Report, asserting that CFS and ME are
classified as distinct illnesses in the International Classification
of Diseases, which is not the case.

This was yet another lost opportunity to set the record straight.
That it was lost has been widely acknowledged to be due to the
domination of the Group by the same Wessely School psychiatric
lobby. No less than five of that psychiatric lobby walked out
because they were not getting their own way sufficiently in that the
final report failed to agree with them that "CFS/ME" is entirely a
primary psychiatric disorder and they were strongly opposed to what
they considered to be pandering to the patients.

At the final meeting of the CMO's Working Group, Consultant
Paediatrician Dr Alan Franklin, a compassionate clinician with great
experience of children with ME, stood squarely in demanding the
restoration of the policy of home tuition into the final Report
after psychiatrists had removed it and he did much to protect
families from unjustly having their sick children taken from them by
inappropriate Child Protection procedures. Nevertheless, the CMO's
Working Group Report makes the point very clearly that "Social
Services should be made aware that medical opinion in this area is
divided" (5.2.8 Child Protection).

The MRC Research Advisory Group on CFS/ME

The outcome of the CMO's Working Group was an announcement that the
Government had asked the MRC to 'develop a broad strategy for
advancing biomedical and health services research on chronic fatigue
syndrome CFS/ME'. Speaking at a meeting of the All Party
Parliamentary Group on ME, Dr Diana Dunstan, Director of the MRC
Research Management Group, said the MRC Research Advisory Group on
CFS/ME (known as the RAG) that had been chosen comprised leading
experts from various fields "who did not previously specialise in
CFS/ME because it was felt appropriate to get a wide range of
specialties and to have an independent and fresh look at the
issue".

The ME community does not consist only of "white whinging women" as
so often portrayed in the press; both sexes are affected by ME and
include clinicians, radiologists, medical scientists (including
vascular biologists and neurobiologists), lawyers (including High
Court judges and their families), university lecturers, academics,
teachers, nurses, Members of Parliament, editors, journalists and
social workers, amongst others, and although physically and
cognitively impaired on various levels, their intelligence remains
intact and many of them have an excellent professional knowledge of
the literature. Within moments of this announcement it was realised
that it was misleading if not false and that some of those appointed
to the RAG were far from "fresh" to the field.

Two names particularly stood out: Professor Alan McGregor and
Professor Philip Cowan.

Alan McGregor works at Kings College and has co-authored papers on
CFS with Simon Wessely (Journal of Affective Disorders 1995:34:
(4):283-289; Biological Psychiatry 1995:32:245-252) so is
hardly "fresh" to the issue. Further, he is listed as a Member of
the Linbury Trust Advisory Panel on CFS; it is the Linbury Trust
that has granted Wessely School psychiatrists over #4 million for
research into "chronic fatigue"; concerning "treatment", the
Linbury Trust approach states that it "deals only with graded
exercise, cognitive behaviour therapy and antidepressants" (A
Research Portfolio on Chronic Fatigue. Edited by Robin Fox for the
Linbury Trust. Published by The Royal Society of Medicine Press,
1998).

Philip Cowan has strong views on CFS and is co-author of a paper
entitled "Abnormalities of Mood" published in the second Linbury
Trust Portfolio on Chronic Fatigue, published in 2000, of which
Simon Wessely was co-editor. Cowan has also co-authored papers on
CFS with Michael Sharpe and other members of the Wessely School
(Journal of Affective Disorder 1996:41: (1):71-76).

Another member of the RAG was Professor Til Wykes, who, like Simon
Wessely, works at the Institute of Psychiatry and who is on record
for believing about CBT that "If you encourage them to do things as
part of a treatment called cognitive behaviour therapy, then you do
see improvement. It's a way of getting people to take control of
their lives. It works".

Representations were therefore made to Professor Sir George Radda,
then Chief Executive of the MRC, who in a written reply dated 15th
July 2002 was obliged to concede that "We are aware of Prof
Macgregor's involvement with the Linbury Trust"; then, somewhat
weakly, he stated "You cite papers from some years ago".
Inevitably, Radda was forced to support the MRC, saying "The
inclusion of Profs Macgregor and Cowan is consistent with MRC's
intention to select the working group from experts in various fields
who do not specialise in CFS/ME". This unconvincing response failed
to reassure the ME community that the legitimate concerns they had
raised would be competently addressed.

With this knowledge, the outcome of the RAG Report was anticipated
by the ME community and once again, their anticipation proved
realistic. The MRC RAG Report was released on 1st May 2003 and
baldly stated that "There are separate entries in the WHO ICD
for "chronic fatigue syndrome" and "myalgic encephalomyelitis" yet
before publication of the final version RAG members had had this
error specifically pointed out to them, as had been the case with
the CMO's Working Group Report. The repeated ignoring of the
evidence on this issue must therefore be seen as deliberate, and
reflects the determination of Wessely School psychiatrists to re-
classify ME/CFS as a psychiatric disorder, no matter what the
evidence to the contrary.

The MRC document refers to "the effects of gender", "mood
disorder", "the effects of suggestibility", "personality
factors", "sickness behaviour syndrome" and abnormalities induced
by "immobility" in relation to ME/CFS and it stated that "studies
investigating causal pathways and mechanisms would not have
immediate impact on increasing understanding of CFS/ME". This
seemed to echo the Linbury Trust view as expressed by Simon Wessely
that "It is usual to try to discover the cause of an illness before
thinking about treatment (but) some illnesses are treated without
knowledge of the cause; examples include chronic fatigue
syndrome"(New Research Ideas in Chronic Fatigue. Edited by Richard
Frackowiak and Simon Wessely for The Linbury Trust. Published by
The Royal Society of Medicine Press, 2000).

Predictably, the MRC Strategy document recommended that there was no
need for research into biomedical aspects of CFS/ME; it
comprehensively dismissed the substantial and validated biomedical
research on ME/CFS published in the international peer-reviewed
literature which had been brought to its attention, stating that
such research was not published in the peer-reviewed literature and
that even if it was, it was "not well-described...the lack of
methodological rigour and independent replication means that many of
these claims find little support from the wider medical community
but may have strong currency among some patients and
practitioners". Having read the draft and before publication of the
final report, several members of the ME community provided the names
of 65 mainstream international journals which had published
significant non-psychiatric papers on ME/CFS (including many high
impact factor journals); these were submitted to the MRC but as was
customary, this information was not acknowledged and was ignored;
clearly, the agenda was pre-determined.

So indeed it turned out: the MRC document stipulated that the way
forwards was to be further research into psychiatric interventions
of cognitive behavioural therapy and graded exercise therapy and
that "there may be a need for specific measures to promote
multidisciplinary collaborations (which would) offer established
centres of excellence the kind of new scientific opportunities that
are essential if (those existing centres) are to sustain their
competitiveness internationally".

The only "centres of excellence" for "CFS" are psychiatric units,
since clinics for ME patients have been summarily closed (for
example, Preston).

Uninfluenced by hard evidence and undaunted by the criticism of the
House of Commons Select Committee on Science and Technology about
its misguided research strategies (see below), the MRC is forging
ahead with the Wessely School agenda.

Cognitive Behavioural Therapy: CFS/ME is regarded by these
psychiatrists as a behavioural disorder and they advise Government
Departments and the insurance industry that it must be "managed" by
a behaviour-modifying technique known as cognitive behavioural
therapy or CBT (now patronisingly referred to as "Lifestyle
Management" in an attempt to disguise the fact that it is
psychotherapy), accompanied by compulsory graded exercise therapy
(GET) and anti-depressants. CBT aims to stamp out "irrational"
thoughts and behaviour and to replace them with "realism". Who
would compel those with motor neurone disease or multiple sclerosis
to "exercise back to fitness" and who would condone the withdrawal
of their state benefits when they simply could not do so?

In its Preliminary (Confidential) Report of 26th February 2001
containing the results of its survey of 2,338 respondents, the
charity Action for ME stated "graded exercise was reported to be
the treatment that made most people worse" (page 6). This was
entirely omitted from the charity's final report. It is this
strategy that is recommended in both the report of the CMO's Working
Group and in the Medical Research Council's CFS/ME Research Strategy.

Such regimes have been shown to be at best ineffective and at worst
extremely harmful, even to the point of death. One well-known MP
with ME followed such advice: he collapsed and died coming out of
the House of Commons gym.

The Medical Adviser to the UK ME Association wrote in the Medical &
Welfare Bulletin (published by the ME Association, Spring 2001) that
he continues to receive more adverse reports about graded exercise
than any other form of intervention and that there is clear
confirmation that many people with ME/ICD-CFS are suffering relapses
through such programmes. He reminded people that doctors have now
been warned by their insurance companies that any form of exercise
treatment needs to be prescribed with just as much care as drug
treatments, otherwise doctors could be taken to court.

At the 6th American Association of Chronic Fatigue Syndromes
International Conference in January 2003, Charles Lapp, Associate
Clinical Professor, Duke University; Director, Hopkins-Hunter
Centre, Charlotte, North Carolina, quoted from Dr Daniel Clauw's
very large study on the efficacy of CBT: after 3 months there were
very modest improvements, but when followed up at 6 and 12 months,
these modest gains were lost. This is but one of the numerous
studies which have shown no benefit from CBT.

Despite the findings from the US that CBT is ineffective, in the UK
Wessely School psychiatrists have just been granted a further
#11.1
million (#2.6 million from the MRC plus #8.5 million from
Government) in order to "strengthen" their own very weak evidence
that such mind-altering management regimes are effective and are the
best "evidence-based" management option; this sum is in addition to
previous funding of over #4 million.

It is perhaps significant that Wessely has served on three Boards of
the MRC, including the Monitoring and Evaluating Steering Group
(MESG) which conducts evaluations of the MRC's research funding
policies; the Neurosciences and Mental Health Board, and the Health
Services and Public Health Research Board.

Report of the House of Commons Select Committee on Science and
Technology

It is also notable that in March 2003 the House of Commons Select
Committee on Science and Technology produced its Report, "The Work
of The Medical Research Council" (HC 132) in which MPs issued a
damning judgment on the MRC, lambasting it for wasting funds and for
introducing misguided strategies for its research. MPs found
evidence of poor planning and of focusing on "politically-driven"
projects that have diverted money away from top-quality proposals.
The unprecedented attack was the result of a detailed probe into the
workings of the MRC.

A chemical link?

A major Report from the Royal Commission on Environmental Pollution
under the Chairmanship of Sir Tom Blundell FRS, FMedSci was released
in June 2003 (Chemicals in Products; pp 291, pub: The Stationery
Office). It pointed out that thousands of chemicals are being used
every day without proper safety tests. Only 40 of the 30,000
chemicals in large-scale use have been tested fully. It would take
50 years to check all commercial chemicals. Blundell said on the
record that "Given our understanding of the way chemicals interact
with the environment, you could say we are running a gigantic
experiment with humans and all other living things as the subject".

The World Wildlife Fund is on record as pointing out that "The
chemical industry is contaminating the nation and the Government is
rolling over and allowing it to continue" (Independent:25.11.03:
Steve Connor).

It is this prevailing use of so many chemicals that is thought to be
chronically stimulating the immune system, dysfunction of which (non-
psychiatrist) world experts have demonstrated lies at the heart of
ME/CFS.

If influential doctors can succeed in portraying ME as non-existent
and CFS as psychiatric in origin, then the chemical companies and
governments who granted them product licences would not be at risk
of being accountable should there turn out to be a provable link
with the synergistic effects of so many chemicals, daily exposure to
which is now impossible to avoid due to the huge increase in
chemical usage.

Accountability becomes even more remote if all research which
demonstrates a link between chemicals and the present upsurge in
chemically-induced ME is blocked from publication, trivialised,
ignored or discredited, as is certainly the case with ME.

Those informed and brave enough to voice their legitimate concerns
and who try to resist what they know to be inappropriate strategies
are treated as "enemies of the State": they are berated, dismissed,
ridiculed, threatened with injunctions, covertly videoed, harassed,
subjected to phone taps, bullied, attacked on the Internet and
denigrated; their universities are contacted with countless
insistent demands for disciplinary proceedings; NHS Consultants
are "warned off"; non-psychiatric ME clinics are closed virtually
overnight; families are taken before the Courts and children are
forcibly removed from their loving parents and placed into
psychiatric "care" by those charged with healing the sick.

Wessely School psychiatrists have spent years defending the chemical
industry. Two important examples are provided:

The Camelford Drinking Water Contamination

In July 1988 20 tonnes of aluminium sulphate were accidentally
pumped into the drinking water supplies of the small town of
Camelford in Cornwall. As a result, residents and visitors
immediately suffered distressing symptoms; seven people died, 25,000
suffered serious health effects and 40,000 animals were affected.
An article by Bernard Dixon in the BMJ on 5th August 1995, based on
the work of psychiatrists Anthony David and Simon Wessely, stated
that "mass hysteria" was largely responsible for the furore. David
and Wessely had found that "anxiety" and "heightened perception of
normal bodily sensations" were the cause of the long-term symptoms
and that "sensational reporting" by the media had been a significant
factor. It was not until 1999 that Paul Altmann from Oxford
(commissioned by lawyers acting on behalf of the Camelford
plaintiffs and funded by Legal Aid, not through the Department of
Health) effectively rebutted the Wessely School view that anxiety
was to blame and showed conclusively that Camelford residents had
objective evidence of considerable organic brain damage which was
compatible with the known effects of exposure to aluminium. Altmann
demonstrated that many of those originally affected still had
symptoms eleven years later.

The organophosphate (sheep dip) issue

In November 1998 the Royal Colleges of Physicians and Psychiatrists
produced a Report (Organophosphate sheep dip: clinical aspects of
long-term low-dose exposure / CR67); two of the authors were
Professor Anthony David and Professor PK Thomas. This was the same
Anthony David who co-authors with Wessely on ME/CFS and whose views
on ME/CFS echo those of Wessely himself. It was Professor Thomas
who, with Wessely, published a chapter on ME in a major textbook of
clinical neurology which stated "A number of patients diagnosed as
having myalgic encephalomyelitis were examined. In many of them,
the usual findings of simulated weakness were present. Over-
espousal of new illnesses may legitimise maladaptive behaviour"
(The chronic fatigue syndrome ---myalgic encephalomyelitis or
postviral fatigue. Wessely S, Thomas PK. In: Recent Advances in
Clinical Neurology No. 6. ed: C Kennard: Churchill Livingstone
1990:85-132). Unsurprisingly, the Report concluded that "possible
explanations for the symptoms are naturally occurring illnesses, for
example, severe anxiety and depression which have been attributed by
the sufferers to OP exposure". The Report recommends "a treatment
trial of a cognitive behavioural approach (and) a randomised
controlled trial of antidepressants".

Conclusion

Correct classification of a disorder does matter because it defines
medical understanding and treatment of a disorder; it also impacts
upon NHS service provision and upon the delivery of appropriate and
necessary medical care.

Nothing eradicates or changes what has been published time and again
by Simon Wessely about those with ME/CFS, or the untold harm that he
and his group of psychiatrists have caused to such very sick people.

Wessely has published many articles denigrating those with ME,
repeatedly claiming (whilst producing no supportive evidence) that
there is "secondary gain" from "adopting the sick role", and that
once their incapacity has been "legitimised" by being given a
medical label, those with ME can then "manipulate" those around them
to do their bidding, and that legitimising their "tiredness"
absolves the sufferer from any sense of guilt for being a failure.

He never visits those who are house or bed-bound and he never
considers those who have no-one at all even to speak to, let alone
to attempt to "manipulate" to do their bidding, and who are reduced
to a bare existence in truly dire circumstances.

He fails to consider that sufferers who have a conviction that they
have a physical disorder may not be suffering from "dysfunctional
thinking" or from "psychosocial denial". Indeed, doctors who have
set views regardless of the facts may themselves qualify as
dysfunctional thinkers.

Powerful minority groups such as the Wessely School should not be
allowed to determine public policy without there being some external
moderation.

Merely to state that there is "medical disagreement" over ME/CFS is
not enough: people in positions of power are misusing that power
against sick people and are using it to further their own vested
interests. No-one in authority is listening, at least not until
they themselves or their own family join the ranks of the
psychiatrically-persecuted, when they too come up against a wall of
utter indifference.

Given that what Wessely promotes is contrary to the established
scientific evidence, how does he manage to maintain such power and
control? Many knowledgeable people believe he maintains it by
singing the desired political tune; by scientific misconduct; by
manipulation of other people's published work; by flawed
methodology; by deception and by the circularity of self-
references. Such blatant use of the same self-references is a clear
illustration of the abuse of the peer-review system (which is
increasingly recognised and accepted as being flawed and
discredited).

Substantial evidence clearly reveals that in pursuit of his personal
ideology or, alternatively, that of his corporate masters, Wessely
abuses the scientific process. The implementation of his personal
philosophy is not based on medical science and has had devastating
consequences, not just for sufferers of ME/CFS but for their
families as well.

There is a gross mismatch between the severity and complexity of
ME/CFS and the medical and public perception of the disorder, but
until Simon Wessely is held to public account, and medical
professionals and public alike are informed and educated about the
reality of ME/CFS, this will continue.

Wessely School psychiatrists got it wrong about Camelford, about
chronic OP poisoning and about irritable bowel syndrome; they have
got it equally wrong about ME.

Also, despite their insistence that fibromyalgia is a functional
somatic syndrome (ie. psychiatric), it is listed in the ICD as a
legitimate medical disorder under "Soft tissue disorders:
Rheumatism" at M79.0.

----The danger is that the Wessely School belief system is so
entrenched
that no amount of explanation, demonstration or presentation of
evidence will sway them from their belief in their own model
of "CFS".

It is a grave matter which deserves urgent and robust investigation
by the Select Committee on Health.

Suggested Further Reading

1.. Myalgic Encephalomyelitis Post-Viral Fatigue Syndrome and how
to cope with it. Celia Wookey. Croom Helm 1986 (reprinted Chapman
& Hall 1989)

2.. Myalgic Encephalomyelitis and Postviral Fatigue States.
A.Melvin Ramsay. Gower Medical Publishing, London. Second edition
1988

3.. Post-Viral Fatigue Syndrome. pp 463. ed. Rachel Jenkins and
James Mowbray. John Wiley & Sons, Chichester, 1991

4.. The Disease of a Thousand Names. Chronic Fatigue/Immune
Dysfunction Syndrome. David S Bell. Pollard Publications, New York,
1991

5.. The Clinical and Scientific Basis of Myalgic Encephalomyelitis
Chronic Fatigue Syndrome. pp 724. ed. Byron M Hyde, Jay Goldstein &
Paul Levine. The Nightingale Research Foundation, Ottawa, Canada,
1992

6.. Chronic Fatigue Syndrome: A Biological Approach. ed. Patrick
Englebienne and Kenny de Meirleir. CRC Press, New York 2002

7.. Canadian Clinical Working Case Definition: Diagnostic and
Treatment Protocols on ME/CFS. Bruce M Carruthers et al. Journal of
Chronic Fatigue Syndrome 2003:11(1):7-116

8.. Denigration by Design? A Review, with references, of the role
of Dr (now Professor) Simon Wessely in the perception of Myalgic
Encephalomyelitis Vol I (1987-1996) pp 217; Vol II (1996-1999) pp
271. Eileen Marshall Margaret Williams. Available at cost price
from the Countess of Mar, House of Lords, London SW1A 0PW

9.. What is ME? What is CFS? Information for Clinicians and
Lawyers. December 2001 EP Marshall M Williams M Hooper.
Available @ #3.50 from Malcolm Hooper. Emeritus Professor of
Medicinal Chemistry, Department of Life Sciences, University of
Sunderland, SR2 7EE, UK

10.. Engaging with ME: Towards Understanding Diagnosis and
Treatment. pp 85 Malcolm Hooper. Available @ #4.55 from Professor
Hooper as above

Appendix I: Tomorrow jan 20

Posted by peter200015 at 12:44 PM EAST
Updated: Saturday, 7 August 2004 2:56 PM EADT
Post Comment | Permalink
Sunday, 18 January 2004
ME UK scandal Cont/
continuing from Jan 17

ACT: Part 2/3: THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?

Two illustrations of the implementation of Wessely School policy

Out of the many known cases of patients being persecuted as a result
of the implementation of Wessely's policy on ME, just two are
mentioned here: details of many others have been put before the
Chief Medical Officer, who has made it known that he receives more
letters about ME than on any other medical issue. There are
numerous records relating to this matter in Hansard (both Lords and
Commons) and on 23rd November 1999, the House of Commons Select
Committee on Health produced its Report looking at adverse clinical
incidents, unexpectedly poor outcomes to treatment, failures in
medical care and poorly-performing doctors: that Committee took
representations from at least eight people about ME.

1. The case of Ean Proctor

In 1988, a formerly healthy 12 year old boy named Ean Proctor from
the Isle of Man had been suffering from ME since the autumn of 1986;
his symptoms included total exhaustion, feeling extremely ill,
abdominal pain, persistent nausea, drenching sweats, headaches,
recurrent sore throat, heightened sensitivity to noise and light and
loss of balance; he was also dragging his right leg. In 1987 his
condition had rapidly deteriorated; he had gradually (not suddenly
as may occur in hysterical disorders) lost his speech and was almost
completely paralysed (which lasted for two years). He had been seen
by Dr Morgan-Hughes, a senior consultant neurologist at the National
Hospital in London, who had reaffirmed the diagnosis of ME and
advised the parents that ME patients usually respond poorly to
exercise until their muscle strength begins to improve; he also
advised that drugs could make the situation worse.

Although he did not obtain his MRCPsych until 1986, during one visit
by the Proctors to the National Hospital in 1988, Wessely (then a
Senior Registrar in Psychiatry) entered the room and asked Ean's
parents if he could become involved in his case; desperate for any
help, they readily agreed. Wessely soon informed them that children
do not get ME, and unknown to them, on 3 June 1988 he wrote to the
Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson)
that "Ean presented with a history of an ability (sic) to use any
muscle group which amounted to a paraplegia, together with elective
mutatism (sic). I did not perform a physical examination but was
told that there was no evidence of any physical pathology.I was in
no doubt that the primary problem was psychiatric (and) that his
apparent illness was out of all proportion to the original cause. I
feel that Ean's parents are very over involved in his care. I have
considerable experience in the subject of 'myalgic
encephalomyelitis' and am absolutely certain that it did not apply
to Ean. I feel that Ean needs a long period of rehabilitation
(which) will involve separation from his parents, providing an
escape from his "ill" world. For this reason, I support the
application made by your department for wardship".

On 10 June 1988 Wessely provided another report on Ean Proctor for
Messrs Simcocks & Co, Solicitors for the Child Care Department on
the Isle of Man. Although Wessely had never once interviewed or
examined the child, he wrote "I did not order any
investigations..Ean cannot be suffering from any primary organic
illness, be it myalgic encephalomyelitis or any other. Ean has a
primary psychological illness causing him to become mute and
immobile. Ean requires skilled rehabilitation to regain lost
function. I therefore support the efforts being made to ensure Ean
receives appropriate treatment". Under his signature, Wessely
wrote "Approved under Section 12, Mental Health Act 1983".

In that same month (June 1988), without ever having spoken to his
parents, social workers supported by psychiatrists and armed with a
Court Order specially signed by a magistrate on a Sunday, removed
the child under police presence from his distraught and disbelieving
parents and placed him into "care" because psychiatrists believed
his illness was psychological and was being maintained by an "over-
protective mother". Everything possible was done to censor
communication between the child and his parents, who did not even
know if their son knew why they were not allowed to visit him.

In this "care", the sick child was forcibly thrown into a hospital
swimming pool with no floating aids because psychiatrists wanted to
prove that he could use his limbs and that he would be forced to do
so to save himself from drowning. He could not save himself and
sank to the bottom of the pool. The terrified child was also
dragged out of the hospital ward and taken on a ghost train because
psychiatrists were determined to prove that he could speak and they
believed he would cry out in fear and panic and this would prove
them right. Another part of this "care" included keeping the boy
alone in a side-ward and leaving him intentionally unattended for
over seven hours at a time with no means of communication because
the call bell had been deliberately disconnected. The side-ward was
next to the lavatories and the staff believed he would take himself
to the lavatory when he was desperate enough. He was unable to do
so and wet himself but was left for many hours at a time sitting in
urine-soaked clothes in a wet chair. Another part of the "care"
involved the child being raced in his wheelchair up and down
corridors by a male nurse who would stop abruptly without warning,
supposedly to make the boy hold on to the chair sides to prevent
himself from being tipped out; he was unable to do so and was
projected out of the wheelchair onto the floor, which on one
occasion resulted in injury to his back. This was regarded as a
huge joke by the staff.

In a further medical report dated 5th August 1988 for Messrs
Simcocks, Wessely expressed a diametric opinion from that of Dr
Morgan-Hughes, writing: " A label does not matter so long as the
correct treatment is instituted. It may assist the Court to point
out that I am the co-author of several scientific papers concerning
the topic of "ME"..I have considerable experience of both (it) and
child and adult psychiatry (and) submit that mutism cannot occur (in
ME). I disagree that active rehabilitation should wait until
recovery has taken place, and submit that recovery will not occur
until such rehabilitation has commenced....it may help the Court to
emphasise that.active management, which takes both a physical and
psychological approach, is the most successful treatment available.
It is now in everyone's interests that rehabilitation proceeds as
quickly as possible. I am sure that everyone, including Ean, is now
anxious for a way out of this dilemma with dignity".

Ean Proctor was kept in "care" and away from his parents for over
five months.

Although this took place in 1988, such brutality is still happening
in the UK: the continued barbaric "treatment" of sick children by
certain psychiatrists who profess to specialise in ME was the
subject of a Panorama programme transmitted on 8th November 1999 and
was profoundly disturbing (a videotape recording is available).
Nothing seems to have been learnt from the appalling case of Ean
Proctor and there is no question that children with ME continue to
be forcibly removed from their parents and home; this issue was
raised by Dr Nigel Speight, a consultant paediatrician at the
University Hospital of North Durham with 20 years experience of
children with ME, who in April 1999 reported to the Chief Medical
Officer's Working Group on "CFS/ME" that the frequency of
psychiatrists diagnosing the parents of children with ME as having
Munchausen's Syndrome by Proxy now amounted to an epidemic. Jane
Colby, Executive Director of The Young ME Sufferers Trust (TYMES
Trust) says "To have your sick child taken from you, to be
suspected of damaging them yourself, just when they most need your
care, is an appalling experience".

2. The case of Child X: Some ten years after her own nightmare
experience, Mrs Proctor answered a knock at her door on the Isle of
Man and was surprised to find herself confronted by a police officer
who had been directed to question her by the Metropolitan Police.
Although at the time she did not know it, another child with ME in
southern England was being threatened with forcible removal from his
home if his parents did not agree to his being admitted to a
psychiatric hospital: in an effort to protect the child from
inappropriate treatment and medical harm, his father had
surreptitiously taken him abroad. When police officers broke into
the house, it seems they found Mrs Proctor's name and address and
she was therefore suspected of assisting the boy's parents in his
disappearance and of harbouring him, which was untrue. Believing
his son to be safe, the father returned to the UK where he was
arrested and sentenced to two years imprisonment, a sentence he was
happy to endure, thinking that his son was safe. However, the
child's mother was then targeted and threatened with imprisonment if
the boy was not handed over to a particular psychiatrist at a
Teaching Hospital. The physically sick child was forced to spend
seven months under the "care" of this psychiatrist and was subjected
to "active rehabilitation", during which time his condition
deteriorated considerably. He is now severely ill and terrified of
health professionals.

The lengths to which these psychiatrists who have focused their
careers on "eradicating ME" will go in order to obtain parental
obedience, and the control they wield, is extremely disquieting.

Professor Wessely, though, seems to be curiously affected by
elective amnesia over the compulsory removal of children with ME
from their parents: his involvement with the wardship of Ean Proctor
is incontrovertibly established, yet in a Channel 4 News programme
on 26th August 1998 in which the case of Child X was being
discussed, when asked by the presenter Sheena McDonald if there can
ever be a case for the coercive approach in situations involving
forcible removal of a child with ME from the parents, Wessely stated
(verbatim quote) "You know very well I know nothing about these
cases" and when Sheena McDonald asked "So you would agree that
unless there is criminal abuse, there is never a case for a coercive
approach to take children away from parents?", Wessely replied
(verbatim quote) "I think it's so rare. I mean, it's never happened
to me". Despite this denial on national television, there is
unequivocal evidence that Wessely had been personally involved in
Ean Proctor's wardship and that he had advised the local authorities
to take the action they did. (Copies of Wessely's letters and
reports and a videotape recording of the Channel 4 News item are
available).

The formal international classification of ME by the World Health
Organisation

Although formally classified by the World Health Organisation in the
International Classification of Diseases (ICD) as a neurological
disorder since 1969 (currently to be found at ICD-10: G93.3),
Wessely School psychiatrists have succeeded in a gradual but
consistent distortion of the clinical entity ME, by denying its very
existence and by subsuming it within the heterogeneous label
of "CFS". The term CFS was first coined in the US in 1988 and at
the time, it was indicated that it was intended to replace the older
term ME or to be considered equivalent to it, but Wessely School
psychiatrists have increasingly equated "CFS" with other chronic
fatigue states (especially neurasthenia) which are formally
classified in the ICD as Mental and Behavioural Disorders (ICD-10
F48.0).

It is important to be aware, however, that ME remains classified as
a neurological disorder in the ICD (with CFS listed as an
alternative term for ME) and that the WHO has confirmed it has no
plans to re-classify the condition as a psychiatric disorder.

Current Government policy concerning ME/CFS

Whereas the American Medical Association has issued a Statement
addressing the fact that basic laboratory tests are insufficient for
ME/CFS patients because it is known that routine screening is normal
in 90% of such patients and that more complex investigations (such
as immunological assays, nuclear medicine screening and gene
expression profiling) are essential to demonstrate the underlying
biological and physiological basis of ME/CFS, in the UK current and
future policy dictates the non-investigation of ME/CFS patients
other than by routine screening; it dictates that no special
provision or facilities other than psychiatric clinics need be
provided for the care of ME/CFS patients; it dictates that no
special training for doctors about the disorder is necessary; it
dictates the denial of appropriate medical care; it dictates that
there is no need for respite care (and commissioning officers are
advised accordingly); it dictates that State benefits for those with
ME be withdrawn unless patients agree to psychiatric intervention,
whereupon (as for all psychiatric disorders) a lower rate of benefit
is payable; it approves the use of Court Orders for the compulsory
removal from their home of both children and adults with ME under
the auspices of the Mental Health Act if patients decline
psychiatric intervention and it dictates that no biomedical research
is necessary into the disorder and that such research should not be
publicly funded by Government bodies.

What is ME and is it the same as Chronic Fatigue Syndrome (CFS)?

Myalgic Encephalomyelitis (ME): ME is not a new disorder; there are
many reports in the medical literature spanning at least 70 years
and in April 1978 the Royal Society of Medicine accepted ME as a
distinct entity. It is a serious and complex disorder which can
affect virtually every major system in the body, with neurological,
immunological, cardiovascular, respiratory, hormonal,
gastrointestinal and musculo-skeletal manifestations.

The cardinal features of ME are post-exertional muscle fatigability
(this bears no comparison with ordinary "tiredness" or "fatigue" or
TATT ("tired all the time", which is a feature of many psychiatric
disorders); profound malaise; intractable muscle pain in specific
groups of muscles (myalgia); variability of symptoms from day to day
and even from hour to hour, and chronicity.

Non-psychiatric research into ME is impressive. It is funded in the
UK almost entirely by small charities such as MERGE
(www.meresearch.org.uk) but not by the larger charity Action for ME,
which has now chosen to support Government policy and as a result
has received significant Government funding, This research deals
with scientific facts, not with beliefs, and there is an ever-
increasing body of evidence from international centres of excellence
of a variety of biomarkers for ME, some of the most significant
being inflammatory markers. The following evidence exists:

neurological deficits - these are demonstrated by nuclear medicine
techniques such as SPECT scans (single photon emission computed
tomography, a type of radionuclide scanning) and MRS scans (magnetic
resonance spectroscopy) which demonstrate cerebral hypo-perfusion,
and PET imaging (positron emission tomography) which shows brain
areas of hypo-metabolism

endocrine dysfunction - there is evidence of disturbance of the HPA
axis (hypothalamic-pituitary-adrenal axis) and of central adrenal
insufficiency, with evidence of an impaired stress response in that
both the right and left adrenal gland bodies are reduced by over
50%, indicative of significant adrenal atrophy

immune dysfunction - there is abundant evidence of an unusual and
inappropriate immune response, with evidence that changes in
different immunological parameters correlate with particular aspects
of disease symptomatology and with measures of disease severity

vascular disturbances - there are specific disturbances peculiar to
patients with ME/CFS, characterised in particular by orthostatic
intolerance (this is not the same as postural hypotension, stated by
some psychiatrists to be related to de-conditioning). There is
evidence of very extensive damage to the endothelium which lines all
blood vessels; it was found to be swollen and stiffened as a result
of severe damage: damage of this kind would compromise the blood
supply to the deep capillary beds in all tissues, including nerve
cells

mitochondrial abnormalities in muscle - there is convincing evidence
that ME/CFS patients reach exhaustion more rapidly than normal
subjects. The use of 31P NMR (31P nuclear magnetic resonance) has
now provided positive evidence of defective oxidative capacity:
oxidative activity involves production of ATP (adenosine
triphosphate, the main energy releasing source of the cell) which
can be seen and monitored in tissues. The findings show that there
is a continued loss of post-exertional muscle power (giving an
additional loss of power), with delayed recovery for at least 24
hours, whereas sedentary controls recovered full muscle power after
200 minutes. Further evidence shows that some ME/CFS patients have
persistent enterovirus within skeletal muscle tissue; these are also
findings consistent with delayed recovery of muscle power after
exertion.

There is also evidence of increased neutrophil apoptosis (programmed
cell death) in ME, whilst evidence of higher levels of TGF b1
(transfer growth factor beta 1), indicative of a persistent viral
infection or of a toxic state has been presented at international
conference proceedings on ME/CFS.

In health, the cells of endothelium that line every blood vessel of
every organ and which provide the all-important blood-brain barrier
have tight cell junctions that prevent many compounds from crossing
these membranes. Some chemicals are known to open these normally
tight cell junctions, allowing free transport of compounds that are
toxic to the central nervous system. When the gut wall, for
instance, has increased permeability, the opioid peptides
(casomorphin and gliadomorphin) which would normally be excluded are
absorbed into the blood stream, giving rise to diffuse
symptomatology and systemic dysfunction. Hypersensitivity reactions
are common in ME/CFS patients, especially to cow's milk and gluten,
as well as to many medicinal drugs, particularly to anti-
depressants. The compromised gut facilitates the development of a
gut dysbiosis which in turn can give rise to autoimmune disease,
with very significant and chronic damage to health.

Studies from both Israel and the US have shown that ME/CFS has
components of autoimmune disease: immunohistochemistry has shown a
high percentage of reactors in these patients as in patients with
lupus (another autoimmune disorder) which is a known overlap
condition.

Studies performed in the US on ME/CFS patients have shown prominent
RNA not observed in normal controls. RNA bands so far sequenced show
homology with human genes which are noted for their tendency for
gene rearrangement under severe physiological stress: environmental
stresses which researchers are investigating include the frequent
and well-documented linking of this disease with food and chemical
sensitivities. In the UK, a pilot study (funded by a small charity,
the CFS Research Foundation) has found changes in 50 or so genes in
patients with ME/CFS, from which it can definitely be concluded that
many of the genes that show up are involved with the immune system.

The exhaustion experienced by patients is extreme, being described
in the Journal of the American Medical Association in the following
terms: "The disabling weakness and exhaustion that a patient with
(ME) CFS experiences is so profound that "fatigue" is probably an
insult" (J. Cuozzo: JAMA 1989:261:5:697).

Other distressing symptoms commonly arising in the more severely
affected are:

? multi-systemic dysfunction including vertigo,
dysequilibrium and ataxia

? difficulty with swallowing (choking fits are not uncommon
and both adults and children may require tube-feeding) and voice
production (particularly if speaking is sustained)

? episodic cardiac pain indistinguishable from myocardial
infarction (heart attack) and segmental chest wall pain

? pancreatitis

? frequency of micturition, including nocturia (bladder and
bowel control may be insecure)

? pronounced vascular disturbance (leading for example to
an inability to use the fingers and to the "ME headache")

? inability to stand unsupported for more than a few
moments with the ability to walk only very short distances, requiring the
use of a wheelchair

? difficulty with simple tasks such as climbing stairs and
dressing

? difficulty with breathing, with sudden attacks of
breathlessness requiring the administration of oxygen (lung function
studies have demonstrated a significant reduction in all parameters
tested)

? in females, ovarian-uterine dysfunction is not uncommon,
whilst in males, prostatitis and impotence may occur

? cognitive impairment may be profound

? hair loss is a recognised and documented finding

? an adverse reaction to medicinal drugs, especially to
anaesthetics, is virtually pathognomonic.

American and Australian research has shown that the quality of life
in this disorder is lower than for any other chronic illness group
apart from terminal cancer and that the quality of life is uniquely
disrupted on all levels.

A major report by an ME charity (Severely Neglected: ME in the UK;
Action for ME, March 2001) found that 77% of sufferers experienced
severe pain; over 80% had felt suicidal as a result of the illness;
70% are either never able, or are sometimes too unwell, to be able
to attend a doctor's clinic; 65% (ie. nearly two out of three) have
received no advice from their GP on managing this illness; 80% of
those who are currently bed-ridden by ME report that a request for a
home visit by a doctor has been refused, and many people do not
receive the State benefits to which they are clearly entitled.
(This report is apparently no longer used by Action for ME, who have
seemingly now joined forces with the Wessely School in endorsing
psychiatric interventions).

Suicide rates are very high, not necessarily because patients are
psychiatrically disturbed, but because the unavoidable isolation and
the physical suffering are simply unbearable without adequate
support. The losses are many, including loss of career, loss of
marriage, loss of ability to be self-supporting and loss of
independence. Although frequently told that they do not look ill,
patients may be severely incapacitated and quite unable to fend for
themselves. Their suffering is compounded if, as is often the case,
their means of financial survival by way of State benefits is
withdrawn because of Wessely's dictum that ME is a "non-disease"
(see below). Many patients are simply too sick to be forced to
attend psychiatric units and to participate in
compulsory "management strategies" which involve exercising, but if
they fail to attend, they are deemed not to want to get better and
their State benefits are withdrawn because of Wessely's dogmatic
advice to Government that ME is nothing more than an "aberrant
illness belief". There are many such known cases, including those
in which ME patients have been threatened with being sectioned (ie.
compulsorily detained under the Mental Health Act) unless they
comply with psychotherapy.

In his Testimony before the US FDA Scientific Advisory Committee on
18th February 1993, Paul Cheney, Professor of Medicine and Director
of the Cheney Clinic, North Carolina and one of the world's leading
experts on ME/CFS, testified as follows:

"I have evaluated over 2,500 cases. At best, it is a prolonged post-
viral syndrome with slow recovery. At worst, it is a nightmare of
increasing disability with both physical and neuro-cognitive
components. The worst cases have both an MS-like and an AIDS-like
clinical appearance. We have lost five cases in the last six
months. The most difficult thing to treat is the severe pain. Half
have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have
abnormal cognitive-evoked EEG brain maps. Most have abnormal
neurological examination. Most have evidence of T-cell activation.
80% have evidence of an up-regulated 2-5A antiviral pathway. 80% of
cases are unable to work or attend school. We admit regularly to
hospital with an inability to care for self".

In the February 2000 issue of the American Journal of Medicine,
Anthony Komaroff, Assistant Professor of Medicine at Harvard,
summarised key points in an Editorial:

"Many controlled studies have compared patients with age-matched and
gender-matched healthy control subjects. The evidence indicates
pathology of the central nervous system and the immune system.
There is considerable evidence from different investigators, using
different techniques and different groups of patients, of a state of
chronic immune activation. In summary, there is now considerable
evidence of an underlying biological process in most patients
(which) is inconsistent with the hypothesis that (the syndrome)
involves symptoms that are only imagined or amplified because of
underlying psychiatric distress. It is time to put that hypothesis
to rest".

As long ago as 1994, Professor Paul Levine from the US National
Cancer Institute stated "the spectrum of illnesses associated with a
dysregulated immune system must now include (ME)CFS" and the Centres
for Disease Control now take the disorder so seriously that it has
been designated a "serious legitimate diagnostic Priority One
disease of public health importance".

In the UK, the very existence of ME is denied: psychiatrist Simon
Wessely advises that ME is a "non-disease" and he has personally re-
classified CFS as a mental disorder in UK reference manuals (see
below). He asserts that the disorder exists only because
of "artefacts of medical specialisaton" and he advises that such
disorders "should not be dignified by their own formal case
definition and body of research" (Functional somatic syndromes: one
or many? S Wessely, C Nimnuan, M Sharpe Lancet 1999:354:936-939).

What is CFS?: In the 1980s in the US (where there is no NHS and
most of the costs of health care are borne by insurance companies),
the incidence of ME escalated rapidly, so a political decision was
taken to rename ME as "the chronic fatigue syndrome", the cardinal
feature of which was to be chronic or on-going "fatigue", a symptom
so universal that any insurance claim based on "tiredness" could be
expediently denied. The new case definition bore little relation to
ME: objections were raised by experienced international clinicians
and medical scientists, but all objections were ignored. In 1991 in
the UK, Wessely and Sharpe were amongst a group which produced their
own criteria for "CFS" and this definition became known as the
Oxford criteria. In 1994 these same psychiatrists were instrumental
in yet another revision of the criteria known as the CDC or the
Fukuda criteria because they were produced under the auspices the US
Centres for Disease Control. Of great significance is the fact that
both the Oxford and the CDC criteria specifically include
psychiatric conditions which are known to feature
prolonged "fatigue" or "tiredness" and, crucially, they specifically
exclude all physical signs from the case definition of CFS,
including the signs of neurological disease which had been noted in
the ME medical literature for many years. Thus the quite specific
neuro-immunological disease ME became subsumed within the
heterogeneous label of "CFS".

This marked a turning point in the "eradication" of ME by
psychiatrists and of the campaign to designate CFS as a "mental"
disorder.

Are both camps studying the same disorder?

Disconcertingly, the editors of both the CMO's Report of January
2002 and the Medical Research Council's subsequent document setting
out its preferred strategy for the direction of future research
in "CFS/ME" (released on 1st May 2003, the editor being Dr Chris
Watkins, whose position at the time was MRC Programme Manager for
Research on Mental Illness) persistently refused to heed repeated
calls for accuracy: when draft copies of both Reports were studied,
the same important error appeared in both documents and was pointed
out but was deliberately retained in the final version of both
reports. That error relates to the classification of ME and of CFS
in the ICD and it reads:

"Currently, CFS and ME are classified as distinct illnesses in the
World Health Organisation's International Classification of
Diseases" (CMO's Report 2002:1.4.1).

As this error was pointed out to the editors of both reports long
before they were published, it cannot have been an over-sight that
the error appeared in the final versions of the reports and it may
well have been expedience on the part of the Wessely School
psychiatrists who dominated both reports (see below).

This error is easily shown to be erroneous: CFS is clearly listed at
G93.3 as a term by which ME is also known, whilst other syndromes of
chronic fatigue are listed under Mental and Behavioural Disorders at
F48.0, a category from which ME/CFS is expressly excluded by the
WHO. Moreover, the WHO has confirmed that it is "unacceptable" for
the same disorder to be classified in two different places and does
not accept this to have occurred.

It is necessary to be aware that the patients studied by Wessely are
largely obtained from either his own 1991 Oxford criteria or from
the 1994 CDC criteria which he helped to develop, neither of which
selects those with ME.

It is increasingly accepted that it is inappropriate to synthesize
results from studies of this illness which use different definitions
to select study populations (A Comparison of Diagnostic Criteria.
Jason et al: Evaluation and the Health Professions: in press
December 2003), but Wessely is well-known for using the
terms "fatigue"; "chronic fatigue"; "CFS" and "ME" interchangeably,
even though they may represent totally different patient
populations. He has been stringently criticised for this in, for
example, the Quarterly Journal of Medicine (QJM 1997:90:723-727),
where Hedrick succinctly pointed out his mischaracterisation of the
facts and noted that it is unacceptable for him to summarise a wide
variety of studies, in this case drawing conclusions across seven
studies which were based on different patient populations -- from
simple fatigue of 30 days to severe chronic fatigue of decades -
without addressing the adequacy of the analysis performed. (In his
article, Wessely even left out findings from cited studies which did
not support his own pre-determined conclusions). To quote
Hedrick: "Studies and review articles on psychiatric factors and
CFS need to be subject to the same standards of scientific inquiry
as studies investigating organic factors, lest the theoretical
stance of the researchers / authors turns out to be the most
powerful predictor of results".

Wessely is always at pains to point out that only "patients" refer
to the disorder as ME and that those with superior knowledge (ie.
doctors) refer to it as "CFS".

Until the issue of case definition is accurately addressed and is
beyond doubt, it seems to serve Wessely's purpose very well indeed
to ensure that clinical obfuscation continues to abound around ME
and CFS.

The published views of the Wessely School on ME

Wessely continues to be overtly patronising in his encounters with
ME/CFS patients whilst continuing to mock and denigrate them in
print and in his behaviour with his colleagues, where those with ME
are the subject of his ill-concealed ridicule and contempt, as
exemplified when he gave the 9th Eliot Slater Memorial Lecture at
the IOP on 12th May 1994 (of which an audiotape recording exists).
The title of his lecture was revealing: "Microbes, Mental Illness,
The Media, and ME: the Construction of Disease".

The sheer cumulative extent of Wessely's denigration of ME patients
as set out in his published works over 16 years has to be read for
oneself to be believed.

For convenience, attached as an appendix to this document is a short
compilation of referenced quotations from the published works on
ME/CFS of both Simon Wessely and Michael Sharpe, which speak for
themselves.

Extracts from many of Wessely's published papers from 1987 to 1999
have been compiled in two spiral-bound volumes for ease of access
and are available at cost price on request (see Further Reading).

Wessely is well-known for his published views on ME. One of the
best known dates from 1993 when, together with Anthony David, he
wrote in the Lancet (Lancet 1993:342:1247-1248) in unmistakable
terms: "The inclusion in the tenth revision of the ICD of benign
myalgic encephalomyelitis under Diseases of the Nervous System seems
to represent an important moral victory for the self-help groups in
the UK (but) neurasthenia remains in the Mental and Behavioural
Disorders chapter under Other Neurotic Disorders. Neurasthenia
would readily suffice for ME. Applying more stringent criteria for
CFS in the hope of revealing a more neurological sub-group succeeds
only in strengthening the association with psychiatric disorders".
What is strange is that the authors seemed not to know that in 1993,
ME had already been classified under Diseases of the Nervous System
for almost a quarter of a century.

Wessely believes that "There lies at the heart of CFS, not a virus
or immune disorder, but a distortion of the doctor-patient
relationship" (Chronic fatigue syndrome: an update. Anthony J
Cleare Simon C Wessely. Update 14th August 1996:61-69).

In another paper, Wessely claims that ME exists "only because well-
meaning doctors have not learnt to deal effectively with suggestible
patients" (Psychological Medicine 1990:20:35-53).

Wessely concluded his major Review of the Post-viral Fatigue
Syndrome (yet another ICD term for ME/CFS) in the prestigious
British Medical Bulletin by citing medical comments on patients
between 1880 and 1908, with the clear implication that such
descriptions apply equally well to today's ME sufferers: "always
ailing, seldom ill; a useless, noxious element of society; purely
mental cases; laziness, weakness of mind and supersensitiveness
characterises them all; the terror of the busy physician" (BMB
1991:47:4:919-941).

In one medical textbook, Wessely wrote about ME/CFS patients
that "the description given by a leading (doctor) at the Mayo Clinic
remains accurate: 'the doctor will see that they are neurotic and he
will often be disgusted with them' " (Chronic fatigue and myalgia
syndromes. Wessely S. In: Psychological Disorders in General
Medical Practice. eds: N Sartorius et al Hogrefe & Huber 1990)

In relation to patients with ME/CFS in a paper on "medically
unexplained symptoms", Wessely states " Patients with functional
somatic symptoms are generally viewed as an unavoidable, untreatable
and unattractive burden" (Patients with medically unexplained
symptoms. Alcuin Wilkie Simon Wessely. British Journal of Hospital
Medicine 1994:51:8:421-427).

Such has been Wessely's "help" to ME/CFS patients over the last
sixteen years of almost supreme reign over their fate that they are
frequently abused by busy physicians whose views are based upon the
misinformation with which they have been targeted and bombarded by
the journals and the medical trade press (over which Wessely exerts
so much editorial control) to the virtual exclusion of opposing
views. Busy practising clinicians rarely have time to study the
international medical literature which presents a very different
picture.

Wessely's own literature output is prodigious; he has authored well
over 200 papers, so it is necessary to be aware that a database
search on "ME/CFS" is dominated by his publications and that he
promotes himself as a world expert in "medically unexplained
symptoms", a category in which he and his adherents firmly
place "CFS"; it is easy, therefore, for the uninformed and
disinterested to be misled about what is actually known and
published in (non-UK) peer-reviewed journals about ME/CFS.

Wessely does not hesitate to refer to himself as a medico-legal
expert, in one instance claiming "I frequently act on behalf of
CFS/ME sufferers in their dealings with insurers (see below for his
involvement with insurance companies) and the courts ---indeed, I
was the principal expert witness in two recent medico-legal cases
concerning CFS. In the first, the sufferer was awarded #160,000
and
the second #320,000. These are the only two cases of their kind
in
the UK". The published response pointed out that in the two cases
to which Wessely referred, he was one of three medical expert
witnesses in both cases and the #320,000 was an out of court
settlement. The #162,000 was awarded in the High Court in December
1992 but was withdrawn by three appeal court judges who accepted
Wessely's testimony that the plaintiff (a diagnosed ME sufferer)
was "suffering from at least some degree of psychological disorder",
evidence which was given without Wessely ever having examined the
appellant. In claiming that there were only two such cases in the
UK, Wessely was misleading, to say the least: in reality, at that
time seven similar cases either had been or were going through the
British legal system. (CFIDS Chronicle Spring 1994:14-18 and Summer
1994:77-79).

Wessely is ceaseless in his efforts to discredit ME and its hapless
sufferers: in early 2002, at his instigation the British Medical
Journal ran a ballot asking doctors to vote on which diseases they
considered to be "non-diseases" which are best left medically
untreated: Wessely proposed ME. Along with ear-wax accumulation,
nail-chewing and freckles, ME was voted a non-disease, and in April
2002 both broadsheet and tabloid newspapers ran banner headlines
proclaiming "Obesity and ME are not diseases, say doctors". He
appears indifferent to the fact that the stigma of having a "non-
disease" could not fail to make things worse for sufferers;
certainly it is the case that since the BMJ poll, many more ME
patients have been removed without notice from their GP's list, in
one specific case, a very sick ME patient was brusquely informed
that "This practice does not treat non-diseases".

As a direct result, an unknown number of ME patients are simply left
to suffer and die at home without any medical care or support.

Illustrations of Wessely's influence over the national perception of
ME/CFS

The WHO Guide to Mental Health in Primary Care: Wessely's
determination to eradicate ME as a legitimate medical disorder seems
never to cease. In 1997 he deliberately included ME in the WHO
Guide to Mental Health in Primary Care. This Guide, available to
all GPs in the UK, was produced by the UK WHO Collaborating Centre
at the IOP, so it legitimately bore the WHO logo. However,
Wessely's covert re-classification of ME was effected without the
approval of the World Health Assembly and the WHO has confirmed in
writing that what Wessely published about the classification of ME
in the UK Guide to Mental Health in Primary Care did not carry WHO
approval, stating: "It is possible that one of the WHO Collaborating
Centres in the UK presented a view that is at variance with WHO's
position". When on 18th August 2003 the Countess of Mar wrote to
Wessely's Dean at the Institute of Psychiatry (Professor George
Szmukler) raising concerns about the erroneous inclusion of ME as a
mental disorder, his reply of 27th August 2003 failed to address the
issues raised and instead consisted of a paean of praise for
Wessely, describing him as "one of the most outstanding medical
researchers in the UK, and indeed internationally (and he) has been
awarded a Research Medal by the Royal College of Physicians
(specifically for work on CFS). The Institute of Psychiatry has
every reason to have confidence in the quality and integrity of
Professor Wessely's research". It later transpired that the Dean
had co-edited a psychiatric text book with Wessely's wife, also a
psychiatrist and a Senior Policy Adviser to the Department of Health.

The NHS Information Authority (NHSIA): this is a body which was set
up in 1999 to disseminate approved information throughout the NHS.
The fact that the WHO so unequivocally distanced itself from the UK
Guide to Mental Health in Primary Care did not prevent Government
Ministers and the NHSIA from relying upon the Guide in their own
database of mental disorders, both as a source of information from
Ministers to Members of Parliament and also for distribution
throughout the entire NHS, with dire results for ME sufferers. In
various letters to MPs, the Parliamentary Under Secretary of State
for Health (Stephen Ladyman MP) refers to the UK Guide to Mental
Health in Primary Care as "the WHO Guide", mistakenly conveying the
notion that he was referring to a Guide produced by the WHO itself
in Geneva (whereas he ought to have been referring to the UK WHO
Collaborating Centre at the IOP) and stating about the
Guide "Although WHO were initially keen to use the
term 'neurasthenia', they eventually decided to call the
section "Chronic Fatigue and Chronic Fatigue Syndrome (may be
referred to as ME)". In one letter dated 29th August 2003, Stephen
Ladyman provided false information for Dr Liam Fox MP, erroneously
stating that the current version of the ICD classified CFS in two
different places: "as Neurasthenia / Fatigue Syndrome in the mental
health chapter (F48.0) and as Post Viral Fatigue Syndrome / Benign
Myalgic Encephalomyelitis in the neurology chapter (G93.3)". This is
quite unacceptable, because, as mentioned above, the WHO itself has
confirmed that this is not the case, and that ME/CFS is expressly
excluded from F48.0. It took until 2003 before "patient power"
finally succeeded in securing an erratum on the website of the Royal
Society of Medicine (publishers of the Guide) but to date (December
2003), the NHSIA has still not corrected its website and continues
to classify ME/CFS as a mental disorder.

The House of Commons Library: it is known that MPs are provided
only with information on ME/CFS which endorses a psychiatric
aetiology, in particular with a Research Paper prepared for MPs by
Dr Alex Sleator of the Science and Environment Section of the House
of Commons Library (98/107, December 1998) which is simply a re-hash
of the discredited Joint Royal Colleges' Report of 1996 (see
below). Many letters exist from MPs which testify to this. This is
despite the fact that medical textbooks, papers, journals and
international conference reports which demonstrate an organic basis
for the disorder are known to have been placed in the House of
Commons Library for the use of MPs. It has been ascertained that
the information supporting an organic basis has been removed to the
Library archives, so unless an MP was sufficiently well informed to
know what s/he was asking for by name, it is difficult for them to
access such material.

The Official Secrets Act: During the life (1998-2002) of the Chief
Medical Officer's Working Group on ME/CFS, members were ordered not
to discuss the deliberations and were even threatened with the
Official Secrets Act (documents available). If the psychiatric
lobby which dominated that Working Group is so confident that they
are right, why the need to force the suppression of opposing views
by resorting to threats of prosecution under the Official Secrets
Act in a Working Group that had nothing to do with State security
but was supposed to be acting simply in the best interests of sick
people? This is in marked contrast to the "Key working principles"
set out in the first Briefing Note of March 1999, which states "The
Group must have maximum 'transparency' ie. as much information about
its activities to be distributed as possible to all potential
interested parties".

The Media: The UK national newspapers frequently run headlines such
as "ME's mainly in the mind---Study reveals yuppie flu can be cured
by positive thinking" (Daily Express, 5th January 1996, about one of
Mike Sharpe's studies) and "ME is just a myth, sufferers told"
(Sunday Telegraph, 20th November 1994, about the conclusions of 150
British psychiatrists attending a pharmaceutical conference in
Jersey). On 5th May 1996 the Daily Express carried an article by
Jonathan Miller from America, which ran with the headline "Chronic
Bandwagon Disease" in which he referred to CFS as "Completely
Fictitious Syndrome".

Medical Trade Journals: The medical trade magazines (widely
distributed free to doctors, especially to GPs and to hospital
libraries by the drug companies) have made a point of promoting
psychiatric interventions for those with "CFS" and of mocking and
denigrating sufferers from ME/CFS in a way they would not dare do
about patients with multiple sclerosis or other neurological
disorders, yet ME is formally classified by the WHO as a
neurological disorder. For example, on 1st April 1994 "GP Medicine"
carried a bold banner headline proclaiming "GPs despise the ME
generation"; on 12th January 1995 "Doctor" magazine ran a feature
called "Bluffer's Guide" by Dr Douglas Carnall, in which he
wrote "Modern bluffers prefer the term chronic fatigue syndrome..if
they really insist on a physical diagnosis tell them chronic fatigue
syndrome is a complex disorder in which multiple biopsychosocial
factors are mediated via the anterior hypothalamus ---in other
words, it's all in the mind. Or, if you're feeling tired, you could
always refer"; "Doctor" magazine also ran a quiz by Dr Tony
Copperfield (known to be the pseudonym of a GP in Essex) in which
GPs were asked to choose from four possible answers to the
question "What would be your initial response to a patient
presenting with a self-diagnosis of ME?" The correct answer
was "For God's sake pull yourself together, you piece of pond
life". One of the worst and most damaging examples was published on
20th October 2001 in "Pulse" in a series called "Choices for the
new generation of GPs". The item on which three GPs provided their
approach was entitled "ME patient with litigation history demands
inappropriate therapy" and the approach provided by Dr Mary Church
(this is her real name: she is a Principal in a practice in
Blantyre, Scotland and most disturbingly of all, she is a member of
the British Medical Association medical ethics committee) was
particularly contemptuous but is not untypical: "Never let patients
know you think ME doesn't exist and is a disease of malingerers.
Never advise an ME patient to make a review appointment. At the end
of the consultation, I say goodbye, not au revoir. Always refer ME
patients to a local expert. It's a wonderful way of passing the
buck". Although some of these items are doubtless intended to be
amusing, it is not appropriate for a doctor to write with such
contempt about any illness, physical or psychiatric, which ruins
lives and quite frequently causes death, and these items are
damaging because they lend credence to what many doctors privately
admit they still believe (ie. Wessely's view that ME does not exist
and that "CFS" is a psychiatric disorder).

Disgraceful treatment of ME patients: On Sunday 15th June 2003,
Clare White, a woman in her early 60s (a graduate who taught French
during her professional academic career but who has been severely
affected by ME for many years) was taken ill: being unable to
contact her GP (because the surgery had only an answering machine
telling patients to telephone NHS-Direct) she was forced to
telephone 999 for an ambulance. She was taken to the A & E
Department of a flagship London hospital in great distress,
suffering from acute renal colic and vomiting. On arrival she was
seen by a very helpful, polite, considerate and conscientious junior
doctor who examined her and found that she had many abnormalities,
including blood in her urine. He asked her if she had any other
diagnosis, so she told him she suffered from ME. He started to
organise various investigations, including an IVP (intravenous
pyelogram), informing her of what was proposed. The woman then
heard him discussing her case with a more senior colleague just
outside her cubicle and was dismayed to hear the senior doctor
instruct the junior doctor to do nothing because ME was
a "personality" problem which did not need further investigation.
She definitely heard this said very clearly. The junior doctor
repeated forcefully that the abnormalities he had found had nothing
to do with ME and that she needed investigating. The two doctors
had a heated argument, the outcome being that the junior doctor,
although clearly very angry, was pressurised into not investigating
further. In her own words, "a stop was put on the works". To his
credit, the junior doctor, who was visibly uncomfortable, arranged a
wheelchair and ambulance transport for the woman to be taken home.
She lives alone and has no-one to look after her. The pain has now
spread to the bladder region but she is receiving no medical care
and no social support. No-one wants to know and no-one cares.

Medical Insurance: In December 2003 a professional woman telephoned
SAGA with a view to taking out private health insurance; she was
asked if she suffered from any chronic physical disorder, to which
she replied that she suffered from ME. The reflex response of the
clerk was "Oh, that's not a physical disorder".

Illustrations of Wessely's influence over the international
perception of ME/CFS

Wessely's influence is not restricted to the UK; of many available,
just two illustrations (one from Australia and New Zealand and one
from Canada) are presented here.

The Australian CFS Report 2002 (Chronic fatigue syndrome: Clinical
practice guidelines ---2002. Report of a Working Group convened
under the auspices of the Royal Australasian College of Physicians.
Medical Journal of Australia 2002:176: S17-S55). This Report
virtually echoed the UK Joint Royal Colleges' Report of 1996 and was
comprehensively condemned as seriously flawed. One typical review
is that of Dr Abhijit Chaudhuri, DM, MD, MRCP(UK), Clinical Senior
Lecturer in Neurology, University of Glasgow and Consultant
Neurologist who specialises in ME/CFS: "This document contains many
flawed statements and observations (and) the accounts appear biased
and inaccurate. I have deep concerns about the selectivity of the
literature review. The document has over-emphasised the behavioural
model and has failed to review the appropriate literature on the
neurology. The paper has devoted much of its clinical discussion on
the comparison of psychiatric disorders with CFS. The quality of
references and review on the neurological aspect of CFS is very
poor, with omissions of research carried out by international groups
in the past three or four years. The cited references show a skewed
representation of a group of psychiatrists. The guidelines show a
preference for cognitive behaviour therapy and graded exercise
therapy and ignore criticisms and the flawed designs of the trials
upon which their success has been claimed. Many areas of the text
appear highly opinionated in favour of the psycho-behavioural model
of CFS. The document cannot be recommended since it does not
reflect the cumulative base of knowledge on CFS".

Notwithstanding intense international criticism, it was this same
Australian Report that formed the basis of the MRC's 2003 Report on
the direction of future research in ME/CFS from its Research
Advisory Group (see below).

A Canadian reference book: Whiplash and Other Useful Illnesses (a
medico-legal reference book by Andrew Malleson, published in 2003 by
McGill-Queen's University Press, Montreal and London). This
supposed reference book is one of the worst in existence and is a
shameful display of ignorance on the part of its author. He cites
Wessely in his references and in the chapter headed "Finessing
Whiplash: Copycats and Fashionable Illnesses" vents his undisguised
venom on ME/CFS patients :

"Somatizers had dropped neurasthenia like a hot brick, Fatigued
somatizers needed a new diagnosis (so) they developed "chronic
fatigue syndrome" (CFS) in North America and "myalgic
encephalomyelitis" (ME) in the United Kingdom. Chronic fatigue
syndrome has gone from strength to strength. In Britain in the mid
1950s, an apparent viral illness featuring muscle pains and severe
fatigue hit 292 members of the staff at the Royal Free Hospital in
London. The illness was well-publicized by the media and, in a
familiar pattern, people all over the country soon came down with
it; many are still doing so. The Royal Free epidemic was first
christened "encephalomyelitis" but because no-one died, the illness
was re-named "benign myalgic encephalomyelitis". Its victims soon
dropped the "benign" so the condition is now known simply
as "myalgic encephalomyelitis". Shorter comments "The disease label
alone was a triumph of the longing for organicity over science".
At the end of the 1980s, conventional medicine focused on the
acquired immunodeficiency syndrome of AIDS. AIDS left its victims
in a chronic state of exhaustion. In the typical way that
fashionable illnesses have of acquiring serious-sounding pathology,
CFS quickly incorporated this concept. The chronically fatigued
promptly renamed their illness "chronic fatigue and immune
dysfunction syndrome (CFIDS), a condition satisfactorily endowed
with all the pathological glamour of AIDS, but respectable. From
the medico-legal point of view (lists produced by itemizers of
symptoms) are a goldmine. They provide lawyers with symptoms over
which they can litigate and healthcare practitioners with the
ability to charge insurance companies for treating practically any
symptoms of which a patient might choose to complain. Victims of CFS
and ME, like the neurasthenics before them, are mostly young to
middle-aged women from the middle and professional classes.
Epidemics of ME, CFS (and) environmental hypersensitivity do not
occur in the industrially underdeveloped countries. Fashions and
affluence go together. Before the days of the welfare state, only
the well-off could afford a fashionable illness, although as
sickness benefits and compensation payments have made the luxury of
pseudo-illnesses more accessible, these illnesses have trickled down
the social pyramid. I have used the word "victim" to designate the
sufferers of fashionable illnesses. I have done so deliberately,
because these sufferers are quick to adopt the victim role. They
often see themselves being harmed by members of the medical
profession who inflexibly refuse to recognize the validity of their
suffering. As well-educated members of the middle and professional
classes, these victims are often vocal advocates for their own
anguish. Despite their fatigue, literate victims of fashionable
illnesses have displayed inexhaustible energy writing, arranging
meetings and proselytising on behalf of their particular fashionable
illness. Victims aim much of their copious literature at the
unbelieving doctors and their callous disregard for such illnesses
(because) in order to provide compensation or support, insurance
companies and government social services require medical validation
of the illness. Some doctors, perhaps out of a sense of scientific
integrity, out of bloody-mindedness, or even, as the claimants for
fashionable illnesses sometimes maintain, because of payments from
insurance companies, refuse to validate these pseudo-illnesses.
Responsible members of the medical profession have difficulty
providing authentication when no evidence of any disability exists".

Andrew Malleson was born and brought up in England but is now a
psychiatrist with Toronto University Health Network; he is also
psychiatric consultant to the Canadian Government Occupational
Health and Safety Agency; his particular interest is in the uses and
abuses of illness, especially illnesses that are intentionally or
unconsciously feigned. He has done medico-legal work for the last
15 years.

Malleson seems entirely unaware of a well-recognised problem in
modern medicine, namely, that medicine does not listen to patients
any more, nor does it pay any regard to symptoms: it only respects
laboratory results. Clinical practice (the very foundation of
medicine) is now ignored. In a nutshell, there is a current
misconception that evidence-based medicine means laboratory-based
medicine, wherein objective clinical observation is accorded lower
evidential weight than laboratory measurements. If no cutting-edge
laboratory investigations are to be permitted (as is currently the
case for ME/CFS patients), then the politically desired status quo
will prevail and the advancement of medical science will continue to
be actively obstructed by corporate control.

Tactics of denial

It is not only upon ME/CFS patients that Wessely School
psychiatrists seek to impose their preferred but unproven
psychotherapy regimes; other related conditions for which these
particular psychiatrists promote their own regime include almost any
syndrome for which medicine does not yet have an explanation of the
exact, confirmed pathoaetiology, for example, fibromyalgia, multiple
chemical sensitivity, chronic low-dose organophosphate poisoning,
Gulf War syndrome, pre-menstrual tension, irritable bowel syndrome,
and atypical chest pain. Psychiatrists of the Wessely School deny
the physical reality of all these conditions, asserting that they
are all one and the same psychiatric condition. (In the case of
irritable bowel syndrome (IBS), it has now been shown not to be
a "psychological" disorder at all: American researchers have
demonstrated molecular alterations in serotonin signalling in the
gastro-intestinal tract and that IBS is caused by altered gut
biochemistry).

In relation to Gulf War syndrome, Wessely claims that Gulf War
veterans have a three-fold increase in somatoform disorders: despite
the fact that in the UK alone, over 500 formerly healthy, tough
young men have died, Wessely denies the existence of any such
syndrome and has advised the Ministry of Defence that one of the
biggest risk factors for a soldier to develop ill-health following
deployment to the Gulf is the fact that s/he knows another deployed
person who has developed a similar illness.

Denial of the known and available evidence

Denial of existing evidence is currently popular by those who see
themselves as "revisionists", and such people are extremely
dangerous, as they seem to believe that they and their like-minded
colleagues alone have the prerogative to define reality.

On 29th April 2000 Channel Four transmitted a programme
entitled "Denying the Holocaust" which revealed the tactics used
by "deniers" of the truth (in that case, the reality of the
Holocaust).

Whilst in no way comparing the suffering and atrocities imposed upon
Holocaust victims with the suffering imposed upon those with ME/CFS
by doctors who do not believe in it, it may nevertheless be salutary
to examine the similarities in the tactics and methods used
by "deniers" and "revisionists" of whatever discipline.

Referring to David Irving (the subject of the lengthy legal action
involving Penguin Books and Professor Deborah Lipstadt, who was also
the subject of the programme). Lipstadt branded Irving "one of the
most dangerous of the men who call themselves revisionists". The
narrator said "familiar with (the).evidence, he bends it until it
conforms to his ideological leanings and political agenda".

Such allegations have been made about Wessely in relation to what he
publishes about ME/CFS.

Tactics used by "deniers" were identified in the programme as
including the following:

manipulation, distortion, deliberately portraying things differently
from what is known, falsifying facts, invention, misquotation,
suppression, illegitimate interpretation, political re-modelling,
exploiting public ignorance and intimidation.

Deniers take liberties with facts, and what is omitted is often more
significant than what is included.

A falsifier uses many different means but all these techniques have
the same effect ---falsification of the truth and denial of reality.

Other tactics include the following :

a.. deniers aggressively challenge others' views, claiming that
others have no proof, and challenge them to validate the established
facts and to produce proof to standards specified by the deniers
themselves but to which they do not require their own "evidence" to
subscribe

o deniers claim that "pressure groups" are active against them and
are attacking both them and the truth

o deniers claim that there are "orchestrated campaigns" against
them

o deniers agree, prepare and organise as a matter of policy a
systematic strategy amongst themselves

o deniers show a readiness to jump to conclusions on every occasion

o deniers endeavour to rationalise their own ideology and for
their own ideological reasons they persistently and deliberately
misrepresent and manipulate the established evidence

o deniers fly in the face of the available evidence

o deniers engage in "complete deniability" which has nothing to do
with genuine scholarly research.

Tactics of denial used in relation to ME/CFS as a physical disorder

Revisionism and denying known evidence in medicine is nowhere more
apparent than in the case of ME/CFS, and the choice of Government
medical advisers is a matter of great economic impact.

To policy makers and physicians in a cash-strapped NHS, the
advantages of denial must seem attractive. The last thing needed is
a disease which threatens the health of hundreds of thousands if not
millions world-wide, so accepting advice which promotes the view
that the condition in question is neither new nor particularly
disabling (and that the disorder is largely self-perpetuated) makes
instant economic sense, especially if the advice also recommends
that granting state benefits to those affected would be not only
inappropriate but counter-productive.

In ME/CFS, denial is directed at undermining the experience and
expertise of doctors who hold different views from Wessely School
psychiatrists.

In medicine, denial ought to be very rare due to the peer-review
system, but in the case of ME/CFS, many peer-reviewers and editors
of journals appear to share the same views as the deniers, so that
articles and research papers which show a lack of objectivity and
which misrepresent the existing literature and which make
unsubstantiated claims abound, with the consequence that readers are
deliberately misled.

In the UK ME/CFS literature (mostly as a result of the assiduous
activities of psychiatrists of the Wessely School), there is
evidence of a systematic attempt to deny the severity of the
symptoms, the role of external causes and the nature of the
illness. Such is the profundity of articles, reports and research
papers produced by this group of psychiatrists that there is now a
widespread belief that ME/CFS is not a disorder which requires money
to be spent on specialist tests or on expensive virological or
immunological research, let alone on long-term sickness benefits.

It may be informative to compare the tactics of denial listed above
as identified in the TV programme with a selection of methods and
tactics used by those engaged in denial activity relating to ME:

o Deniers consistently ignore existing evidence which contradicts
their own preferred theories: they disregard evidence, they
misconstrue findings, they distort figures and they speculate.

o Deniers apply a double standard to the evidence --- they support
their own claims with a select choice of studies, with flawed
research (ie. with research which has been shown to be flawed in the
medical literature), and with a mass of generalisations, whilst
insisting that the opposition provides irrefutable proof. These
authors down-play and attempt to overlook inconsistencies in their
own research.

o Deniers challenge the expertise of those with whom they
disagree, implying that their own claims are based on balanced
scientific scholarship whilst those of others are based only on myth.

o Deniers portray sufferers as victimisers, claiming that it is
patients who are guilty of targetting psychiatrists; who then
portray themselves as the vulnerable and wronged group. There is
reference to "vicious campaigns" organised by "pressure groups" and
to unreasoned hostility on the part of the patients.

o Deniers minimise or trivialise the distress and suffering of
those with ME/CFS, alleging that patients exaggerate their symptoms
and suffering.

o Deniers promote the view that patients have only themselves to
blame, and that the problem is therefore not external but internal.

o Deniers often include a totally reasonable and uncontroversial
supposition, (for instance, that decisions must be based upon the
best evidence), which gives the impression that their other
arguments must be equally reasonable and valid.

o Deniers often suggest or imply that patients are motivated by
financial or secondary gain (even though there is not a shred of
evidence to support such a claim), and that their claims for state
benefits are unjustified.

o Any negative characteristics of a minority of patients are
typically generalised and ascribed to all ME/CFS patients, without
any supportive evidence.

o Deniers suggest or imply that patients have formidable powers,
for instance that they are able to influence certain institutions;
that they get the media on their side and even that they have
managed to influence the World Health Organisation. It is also
alleged that patients use such tactics to misrepresent the situation
to lead others astray.

o Deniers even re-write medical history and alter it so that it
appears to support their own claims (this is certainly demonstrable
in the psychiatric interpretation of the ME literature).

o Deniers may attempt to rename or reclassify the condition (for
example claiming it as a modern form of an old (psychiatric)
illness).

o Deniers make inappropriate comparisons between syndromes,
suggesting that they are all simply the same (psychiatric) syndrome,
ignoring or downplaying any specific and / or unusual features which
are present.

In the case of ME/CFS, it seems apparent that the tactics of denial
which were exposed in the Channel Four programme mentioned above are
indeed being implemented by the psychiatrists of the Wessely School;
out of the many available illustrations, just the following are
provided:

o On 25th April 2000, Dr Michael Sharpe of Edinburgh wrote a
letter to Mrs Ann Crocker in which he stated "I understand your
desire to have the condition classified as a Neurological Disorder
(but) trying to change doctor's (sic) behaviour by altering
classification probably will not work and might even provoke a
paradoxical response". The reality is that ME is already formally
classified by the World Health Organisation in the ICD as a
neurological disorder, and it is Wessely School psychiatrists (not
patients) who are actively trying to "alter the classification" from
neurological to psychiatric.

o On 18th January 2000 Simon Wessely wrote to the Countess of Mar
that the "ad hominen (sic) attacks" upon him "may have the unforseen
outcome of re-inforcing unhelpful stereotypes of sufferers held by
some in high office". Again, this seems to be nothing less than a
threat, with the use of an intimidation technique made, it must
never be forgotten, to very sick human beings who have been trying
since Wessely came to such prominence in 1987 to redress the wrongs
perpetrated upon them by these powerful medical deniers.

o In the Joint Royal Colleges' Report on CFS (see below), the
authors mention a paper by Buchwald, Gallo and Komaroff et al
(reference 128 in the Joint Report) but dismiss it, stating "White
matter abnormalities occur in a number of settings and their
significance remains to be determined", whereas the paper itself
concludes that patients with ME/CFS "may have been experiencing a
chronic, immunologically mediated inflammatory process of the
central nervous system" and that the MRI scans revealed a punctate,
subcortical area of high signal intensity consistent with oedema or
demyelination in 78% of cases. This is a clear illustration of the
biased and misleading personal interpretation of the available
evidence by Wessely School psychiatrists.

o Also in the Joint Royal Colleges' Report, the authors mention a
paper by Bombadier and Buchwald (reference 173 in the Report) and
convey that this paper supports their own stance, whereas the paper
itself actually contradicts the Joint Report and clearly
states "The fact that the same prognostic indicators were not valid
for the group with CFS challenges the assumption that previous
outcome research on chronic fatigue is generalizable to patients
with chronic fatigue syndrome".

o Another illustration is found in the Joint Royal Colleges'
Report: the authors rely on a paper by Sandman et al (reference 163
in the Joint Report) in apparent support of their own view that the
results of neuropsychological testing have been inconsistent, but
the paper in fact concludes "the performance of the CFIDS patients
was sevenfold worse than either the control or the depressed group.
These results indicated that the memory deficit in CFIDS was more
severe than assumed by the CDC criteria. A pattern emerged of brain
behaviour relationships supporting neurological compromise in (ME)
CFS". One would never know this from the way the authors of the
Joint Royal Colleges' Report deliberately downplayed, misrepresented
and manipulated the references which they cited in supposed support
of their own views.

The Joint Royal Colleges' Report on CFS, October 1996

Like its successors from the same stable (the CMO's Working Group
Report of January 2002 and the MRC's Strategy document of May 2003 -
see below), this Report erroneously refers to CFS as being
classified by the WHO in the ICD under "Mental and Behavioural
Disorders" (F48.0), whereas in fact CFS is one of the terms by which
ME is listed and is classified under Diseases of the Nervous System
at G93.3.

It is worth noting that out of the 15 medical members of the joint
working group, 12 were committed adherents of the Wessely School
well-known for their entrenched views on ME/CFS, illustrations of
which include the following:

Anthony David: "Doctor behaviour, such as sick certification,
emerged as a significant contributor to the risk of chronic
fatigue" (Predictors of chronic "postviral" fatigue. Lancet
1994:344:864-868).

Sean Lynch: "The original criteria for the chronic fatigue syndrome
would exclude patients with any concurrent psychiatric symptoms, but
as few patients would then meet this definition, these criteria were
widened to include psychiatric morbidity" (Antidepressant therapy
in the chronic fatigue syndrome. British Journal of General Practice
1991:41:339-342).

Anthony Pelosi: "The myalgic encephalomyelitis societies should not
try to set the research agenda or shout down views with which they
disagree" (Chronic fatigue syndrome and myalgic encephalomyelitis.
BMJ 1994:309:276), It seems to be perfectly acceptable for
psychiatrists to set the research agenda and to shout down views
with which they disagree,

It is enlightening to compare Wessely School views as set out in the
Joint Royal Colleges' Report on CFS (CR54) of October 1996 (known to
have been dominated by Wessely) with an American Report of the same
time (Chronic Fatigue Syndrome: Information for Physicians. NIH
Public Health Services, US Department of Health and Human Services,
September 1996).

For example, with regard to children, the American Report states on
page 7 that it advocates a "supportive approach" but the UK Report
states that children may need to be forcibly removed from their
parents, stating "CFS in children covers a broad spectrum of
problems, even Munchausen's by Proxy Syndrome" (10.2).

The American Report states on page 8 that "the physician should
work with the school to limit class time, if necessary, and to
resume school attendance gradually", but the UK Report urges "an
immediate return to school" (10.12).

The American Report advises "Home tuition may be an alternative"
but the UK Report states "School phobia is important as a
complication of CFS" (10.8) and "We discourage home tuition" (10.12).

The American Report points out (on page 3) that "It is important to
note that about 40% of carefully evaluated CFS patients do not have
depression or other psychiatric illness", but the UK Report asserts
that 75% of all CFS patients do have psychiatric illness (Summary
for commissioners, page 45).

The American Report states (on page 3) that "some studies have found
a significantly greater prevalence of allergy in CFS patients (and)
patients report a worsening of allergic symptoms or the onset of new
allergies after becoming ill with CFS"; on page 9 it refers to "the
high prevalence of allergies in the CFS population", but the UK
Report describes CFS patients who have "food allergies (or) chemical
sensitivities" as fulfilling the criteria for somatisation disorder
(7.9); significantly, the authors refer to "food allergy" in
inverted commas, thereby indicating their disdainful non-acceptance
of food allergy as legitimate.

The UK Report authors are adamant that "We see no need for the
creation of specialist units" (12.1); that "We do not think that
specific guidelines on the management of CFS should be issued for
general practitioners" (12.4) and that "In CFS, the greater the
number of somatic symptoms, the greater the probability of
psychiatric disorder" (7.11)

The UK Report authors are unequivocal that "there is no
justification" for the use of neuroimaging studies
because 'abnormalities' require careful interpretation (and may be)
of little consequence" (7.13); this might be compared with what the
foremost UK researcher in nuclear medicine, Dr DC Costa of UCL
Medical School, believes about the abnormalities found in ME, namely
that the hypo-perfusion of the mid-brain seen in ME is more severe
than in AIDS encephalitis, or indeed in any other brain disease he
has examined since 1985.

The UK Report authors specifically advise against looking at
immunological parameters since "revealed changes (are) rarely
substantial" (8.9), and in their Summary for commissioners they
conclude that "No investigations should be performed to confirm the
diagnosis".

Predictably, the authors state that the "aims of assessment"
should "elicit the beliefs and fears of patient and family (and)
identify psychological distress" (8.12).

The UK Report authors state "We have concerns about the dangers of
labelling someone with an ill-defined condition which may be
associated with unhelpful illness beliefs" (9.2): ME is classified
by the WHO as a neurological disorder, so it is hardly an "unhelpful
illness belief" as these psychiatrists claim it to be.

The American Report states on page 6 that "Patients with CFS should
be treated with compassion", but the message of the UK Report is
clear --- ME does not exist; CFS patients must not be gratified on
any level and their aberrant beliefs that they are physically sick
must be corrected by compulsory psychotherapy.

Of note is that out of the 256 cited references, almost half were by
the same or associated group of authors and included nine which had
not been published or reviewed.

Requests that the flawed Joint Royal Colleges' Report be withdrawn
were made at the highest level but were refused. The damage done by
the Joint Royal Colleges' Report is still reverberating on the UK ME
community, but it is notable that at a "CFS" event at the Royal
College of Physicians in January 2003, the current President
(Professor Carol Black) indicated that more had been learnt since
the publication of the Joint Report. Informed attendees refrained
from pointing out that much had been learnt long before the 1996
Joint Report was published but that the available knowledge base was
comprehensively rejected by the report's authors.
Cont/ Jan 19

Posted by peter200015 at 12:36 AM EAST
Updated: Saturday, 7 August 2004 2:52 PM EADT
Post Comment | Permalink
Saturday, 17 January 2004
Medical Scandal
Part 1/3: THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?

THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS?

A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER
MEMBERS OF THE "WESSELY SCHOOL" IN THE PERCEPTION OF MYALGIC
ENCEPHALOMYELITIS (ME) IN THE UK

Background Briefing for the House of Commons Select Health Committee

Is it the case, as demonstrated in a TV documentary, that multi-
national corporations and not governments now control the world?
Are powerful and influential psychiatrists who work within the
Mental Health Movement linked to the multi-national corporations
that now dominate and control medical and research institutions and
whose life-blood is profit? (Politics isn't working: the End of
Politics. Cambridge academic Noreena Hertz presented evidence that
multi-national corporations are taking the place of elected
governments. ITV Channel 4, 13th May 2001)

To the detriment of the sick, the deciding factor governing policies
on medical research and on the management and treatment of patients
is increasingly determined not by medical need but by economic
considerations.

Document prepared for the Countess of Mar by Malcolm Hooper,
Emeritus Professor of Medicinal Chemistry, in collaboration with
members of the ME community, Department of Life Sciences, University
of Sunderland, SR2 7EE, UK

December
2003

CONTENTS

Executive Summary

Brief Introduction

The Mental Health Movement

What is the problem?

What is the "Wessely School"?

The Opinion of a Queen's Counsel

Are psychiatrists cruel?

Two illustrations of the implementation of Wessely School policy

The case of Ean Proctor

The case of Child X

The formal International Classification of ME by the World Health
Organisation

Current Government policy concerning ME

What is ME and is it the same as CFS?

What is CFS?

Are both camps looking at the same disorder?

Some published views of the Wessely School on ME

Illustrations of Wessely's influence over the national perception of
ME

The UK Guide to Mental Health in Primary Care

The NHS Information Authority (NHSIA)

The House of Commons Library

The Official Secrets Act

The Media

The Medical Trade Journals

Disgraceful treatment of patients

A medical insurance company's perception of ME

Illustrations of Wessely's influence over the international
perception of ME

The Australasian Report on CFS (2002)

A Canadian medico-legal reference book (2003)

Tactics of denial employed by Wessely School psychiatrists

Denial of the known and available evidence

Tactics of denial used in relation to ME/CFS

The Joint Royal Colleges' Report on CFS (1996)

Comparisons with a contemporaneous American Report

The Chief Medical Officer's Working Group Report on CFS/ME (2002)

Undeclared competing interests

The disability insurance industry

The published views of Professor Anthony Pinching

The York Systematic Review of the literature

The Medical Research Council Research Advisory Group on CFS/ME

Cognitive Behavioural Therapy and Graded Exercise

Report of the House of Commons Select Committee on Science and
Technology on MRC

A chemical link?

Conclusions

Suggested Further Reading

Appendix I ---Quotations from the published works of Simon Wessely
on ME/CFS

Appendix II -Quotations from the published works of Michael Sharpe
on ME/CFS

EXECUTIVE SUMMARY

Evidence is presented in this document to show that

o In the UK, patients with myalgic encephalomyelitis (ME, also
known as Chronic Fatigue Syndrome or CFS), particularly children,
have suffered gross and barbaric abuse and persistent denigration as
a consequence of the beliefs of certain psychiatrists who are
attempting to control the national agenda for this complex and
severe neuro-immunological disorder

o These psychiatrists are shown to be clearly in breach of the
first tenet of medicine --- first do no harm--- in that by their
words and deeds they have wreaked havoc in the lives of ME/CFS
patients and their families by their arrogant pursuit of a
psychiatric construct of the disorder which ignores the abundant
clinical and scientific evidence (widely presented in the
international medical and scientific literature) of the organic
nature of ME/CFS
o There have been persistent and frequently covert attempts by
these psychiatrists to subvert the international classification of
this disorder, with destructive consequences for those affected

o To the serious disadvantage of patients, these psychiatrists
have propagated untruths and falsehoods about the disorder to the
medical, legal, insurance and media communities, as well as to
Government Ministers and to Members of Parliament, resulting in the
withdrawal and erosion of both social and financial support

o Influenced by these psychiatrists, Government bodies such as the
Medical Research Council have continued to propagate the same
falsehoods with the result that patients are left without any hope
of understanding or of health service provision or delivery. As a
consequence, Government funding into the biomedical aspects of the
disorder is non-existent

o This coterie of psychiatrists has proven affiliations with
corporate industry and has insidiously infiltrated all the major
institutions, directing funding for research into an exclusively
psychiatric model of the disorder, focusing on "management
strategies" involving psychiatric techniques, even though such
techniques have been shown to be at best of no lasting value and at
worst to be harmful to patients with ME/CFS

o The same psychiatric model has been extended by these
psychiatrists to a number of other disorders including Gulf War
Syndrome, fibromyalgia, multiple chemical sensitivity and chronic
low-dose organo-phosphate poisoning, leaving many other people
without the help and support they so urgently need.

THE MENTAL HEALTH MOVEMENT -- PERSECUTION OF
PATIENTS ?

A consideration of the role of Professor Simon Wessely in the
perception of myalgic encephalomyelitis (ME): A matter for the
Select Committee on Health

NB. For brevity, not all references are cited in the text but all
are available on request from the Countess of Mar, House of Lords,
London SW1A 0PW

Brief Introduction

The matter for scrutiny by the Select Committee on Health concerns
myalgic encephalomyelititis (ME) and is straightforward:

(i) is the Department of Health's current and
proposed policy on the management of patients with ME as provided
and promoted by psychiatrists of the "Wessely School" (see below)
harmful to patients and

(ii) are such patients being abused as a consequence
of scientific misconduct?

ME has been formally classified by the World Health Organisation
(WHO) in the International Classification of Diseases (ICD) as a
neurological disorder since 1969, but psychiatrist Simon Wessely
advises Government that the disorder does not exist other than as
an "aberrant belief" that one has a disorder called ME. He refers
to "chronic fatigue syndrome" (CFS) and asserts that CFS is a
somatoform (psychiatric) disorder in which patients produce physical
symptoms as a means of expressing emotional distress.

This is at variance with the WHO classification of the disorder:
Chronic Fatigue Syndrome is listed in the ICD as a term by which ME
is also known and according to the ICD, the two terms are
synonymous, thus "CFS" does not represent a psychiatric disorder
even though Wessely School psychiatrists assert that it does.

Of potential significance is the fact that American researchers have
demonstrated that in ME/CFS, a particular pathway in the body which
is affected by viruses can also be affected by chemicals and it is
known that ME/CFS can be either virally or chemically induced
(Interferon-induced proteins are elevated in blood samples of
patients with chemically or virally induced chronic fatigue
syndrome. Vojdani A; Lapp CW. Immunopharmacol Immunotoxicol
1999:21: (2):175-202)

For at least a decade, questions about possible scientific
misconduct and flawed methodology by Dr (now Professor) Wessely and
his group of co-psychiatrists have been raised and published in
international medical journals but it is only relatively recently
that his long-time involvement as medical adviser to commercial
bodies having a vested interest in his publications on ME has been
exposed (see below).

There is no question that many millions of pounds sterling are at
stake and that the vested interest groups for whom these
psychiatrists act as medical advisers would like to prevent
insurance cover for ME patients (those with a psychiatric label are
denied medical insurance cover); prevent disability payments to
them; prevent successful liability lawsuits and maintain the
supremacy of their industries (see below).

Increasingly, it is now "policy-makers" and Government advisers, not
experienced clinicians, who determine how a disorder is classified
and managed in the NHS: the determination of an illness
classification and the provision of policy-driven "management" is a
very profitable business.

The situation is admirably set out in a letter dated 29th December
2003 to the e-British Medical Journal from Angela Kennedy, Social
Science Lecturer at the Open University:

"I suspect that psychiatry, if it is not careful, will eventually
become most ridiculed over its adherence to one theme: that
of 'somatization'. Presently, sufferers of Myalgic Encephalitis
(sic) (also called Chronic Fatigue Syndrome) are increasingly
subject to medical negligence or even abuse because the huge body of
international bio-medical evidence is ignored, especially in
Britain, in favour of an unfortunately incomprehensible, incoherent
and empirically inadequate theory.

"The categorization of an illness as being psychosomatic also means
a further categorisation of an individual as 'deviant' rather
than 'ill', so that they are denied sympathy, support, and even
benefits they are entitled to. Categorised as 'deviant', the ill
then suffer increasing social exclusion and material inequalities.

"The main problem with somatization theories is that they cannot be
either proven or disproven and therefore are not very 'scientific'
at all.

"In relation to ME/CFS at least, flawed, unsubstantiated theories
have been uncritically adopted and treated as 'fact', even against
the already substantial (and substantiated) body of bio-medical
evidence which continues to grow.

"The material effects of such sloppy 'science' have had two main
consequences for ME sufferers: firstly, the medical impairments of
the illness have often been ignored and left untreated, and many
sufferers therefore become severely disabled, their physical health
absolutely devastated and their chances of a restoration to good
health uncertain at best. Secondly, children in particular end up
victims of institutional abuse (though this can happen to adults
too). In the case of children, they may be forcibly removed from
their concerned parents and subjected to draconian 'treatments' that
could, quite easily, be termed abuse.

"The capacity for abuse of institutional power appears to have
increased enormously, and this is becoming most evident in the
fields of health care and particularly psychiatry. How such problems
are addressed will determine the future of such disciplines, as far-
reaching demands for justice from those who are faced with or
survive such institutional abuse are inevitable, and this will lead
to a critical review of medical practice, both from other
disciplines, and society at large".

The Mental Health Movement

In 21st century medicine the Mental Health Movement is politically
correct and immensely powerful: it is backed by the giant chemical,
pharmaceutical and insurance industries which are now the funders
and controllers of both undergraduate and post-graduate medical
education. In the UK, these industries have known links to research
funding bodies such as the Medical Research Council (MRC) and as a
result, a vast amount of public money is presently being provided in
an attempt to strengthen the currently weak psychiatrically-driven
research evidence that behaviour-modifying "chronic illness
management strategies" are effective.

As a consequence, the MRC has decided not to fund urgently needed
biomedical research into complex and devastating disorders such as
myalgic encephalomyelitis (ME).

Also relevant may be the Council of Europe Strasbourg Convention on
Human Rights and Biomedicine, which confers rights including
provision for drug and other medical trials on human beings which in
certain circumstances could be carried out without the individual's
consent: this applies to three groups of people in particular:

(i) those who are deemed to be mentally ill

(ii) those for whom no other known treatment is
effective

(iii) children

The Convention (not yet ratified by the UK) specifically states that
in certain situations, "general interests" will take precedence over
those of the individual.

Concurrently, in the UK, proposals for the Reform of the Mental
Health Act were drawn so widely that they would give psychiatrists
far greater powers to enforce compulsory psychiatric treatment upon
both adults and children: proposals included provision for
psychiatrists to be able to drug people (including children against
the wishes of their parents) if they have "any disability or
disorder of the mind or brain, whether permanent or temporary, which
results in an impairment of mental functioning".

Mental Health Movement advocates claim that disorders such as ME and
CFS come into what they call the "medically unexplained symptoms"
category (known as MUS or MUPS, which stands for "medically
unexplained physical symptoms") and that such disorders are
psychogenic in origin; contrary to established principles of
scientific investigation and discovery, these psychiatrists assert
that "if all you look for are biomedical explanations, you're
missing the whole picture" and that if Government wants to solve the
waiting-list dilemma (which it does, for political reasons), "they
will have to channel serious money at this problem" by funding
psychiatric management regimes
(http://www.thes.co.uk/search/story.aspx). The implications of the
implementation of this policy are already spiralling out of control.

On 4th May 2000, a letter from the Office of the Minister of State
at the Department of Health (signed by John Hutton) seemed not to
rule out the re-classification of ME/CFS as a "mental" disorder,
stating it was unlikely that the proposed reforms to the Mental
Health Act would affect such patients (quote) "even if (ME/CFS)
were reclassified as a mental rather than a physical disorder".

In October 1999 Dr Michael Sharpe (a psychiatrist and prominent
member of the Wessely School) gave a lecture at the University of
Strathclyde at which he said: "Purchasers and health care providers
with hard-pressed budgets are understandably reluctant to spend
money on patients who are not going to die and for whom there is
controversy about the 'reality' of their condition (and who) are
undeserving of treatment".

Are those with other classified neurological disorders
also "undeserving of treatment"?

Infiltration of institutions by vested interest groups was the
subject of an article by George Monbiot published on 9th December
2003 in the Guardian (Invasion of the Entryists), from which the
following extracts are taken and to whom acknowledgement is made:

"One of the strangest aspects of modern politics is the dominance of
former left-wingers who have swung to the right. The "neo-cons"
pretty well run the White House and the Pentagon, the (UK) Labour
party and key departments of the British government. But there is a
group which has travelled even further to the extremities of the pro-
corporate right. Its tactics (involve) entering organisations and
taking them over. Research published for the first time today
suggests that members of this group have colonised a crucial section
of the British establishment. The organisation began in the late
1970s as a Trotskyist splinter; it immediately set out to destroy
competing oppositional movements. In 1988 it set up a magazine
called Living Marxism (known as) LM. By this time it had moved to
the far right and was led by the academic Frank Furedi who started
writing for the Centre for Policy Studies (founded by Keith Joseph
and Margaret Thatcher) and who contacted the supermarket chains,
offering, for #7,500, to educate their customers 'about complex
scientific issues'. In the late 1990s the group started
infiltrating the media, with remarkable success. In 2000, LM was
sued by ITN after falsely claiming that (its) news journalists had
fabricated evidence of Serb atrocities against Bosnian Muslims. LM
closed, and was resurrected as the web magazine Spiked.

"All this is already in the public domain. But now, thanks to the
work of researcher Jonathan Matthews, what seems to be a new front
in this group's campaign has come to light. Its participants have
taken on key roles in the formal infrastructure of public
communication used by the science and medical establishment.

"Its participants (work) for the PR firm Regester Larkin, which
defends companies such as the biotech giants Aventis, Bayer and
Pfizer against consumer and environmental campaigners.

"(One of its participants) is Fiona Fox, who is the director of the
Science Media Centre (which) is funded, amongst others, by the
pharmaceutical companies Astra Zeneca, Dupont and Pfizer. Fox has
used the Science Media Centre to promote the views of industry and
to launch fierce attacks against those who question them.

"Are we looking at a group which wants power for its own sake, or
one following a political design? The scientific establishment
appears unwittingly to have permitted its interests to be
represented to the public by the members of a bizarre and cultish
political network. Far from rebuilding public trust in science and
medicine, this group's repugnant philosophy could finally destroy
it".

Of significance to the ME community is the fact that Spiked's health
writer is Dr Michael Fitzpatrick, well-known for presenting and
promoting the views of Professor Simon Wessely and for his perverse
and immoderate attacks on those with ME. One such article can be
found at http://www.spiked-online.com/Articles/00000002D3B6.htm
(SPIKED: Health: 17th January 2002: "ME: the making of a new
disease"). Referring to the then newly published Chief Medical
Officer's Working Group report on CFS/ME (see text), Fitzpatrick
roundly derided the CMO, Professor Liam Donaldson: "The CFS/ME
compromise reflects a surrender of medical authority to
irrationality. The scale of this capitulation is apparent when
Professor Donaldson claims that CFS/ME should be classified together
with conditions such as multiple sclerosis and motor neurone
disease. The effectiveness of the ME lobby reflects its middle-
class base."

Also of significance is the fact that in its NOTES FOR EDITORS,
Spiked states that Professor Simon Wessely is available for comment
or interview and can be contacted through Sandy Starr at Spiked
(0207-269-9234).

Of relevance to the ME community is that fact that Lord (David)
Sainsbury (Science Minister -see text) is a keen supporter of the
Science Media Centre. It is Lord Sainsbury's Linbury Trust that
since 1991 has financially supported studies of chronic fatigue by
psychiatrists of the Wessely School.

Information on the GMWATCH website (www.gmwatch.org) is also
important to the ME community. By 2003, Lord Sainsbury had donated
over #11 million to the Labour Party. Mark Seddon, a member of
Labour's National Executive Committee, told the BBC "In any other
country, I think a government minister donating such vast amounts of
money and effectively buying a political party would be seen for
what it is, a form of corruption of the political process".

For some, the choice of an unelected biotech investor and food
industrialist to be Science Minister is more than emblematic of the
UK's corporate-science culture.

In a recent Financial Times article, Lord Sainsbury cites the
following statistics: British universities spun off 199 companies in
2000, up from an annual average of 67 in the previous five years.
The UK's ratio of companies to research spending is now more than
six times higher than the US. "It's a dazzling record", Lord
Sainsbury is quoted as saying.

Not everyone shares Sainsbury's enthusiasm. Professor Stephen Rose
of the Open University Biology Department is among those who have
commented critically on this emerging corporate science
culture: "The whole climate of what might be open and independent
scientific research has disappeared".

What is the problem?

The problem is that the Mental Health Movement does not restrict
itself to mental disorders and ME has been the subject of
unremitting psychiatric spin since the late 1980s: although ME is
not classified by the WHO in the ICD as "mental", in the UK it is
being high-jacked and covertly re-classified as "mental" by a small
but influential group of psychiatrists known colloquially as
the "Wessely School" (Hansard: Lords: 19th December 1998:1013 - see
below) who have their own vested interests in casting their net of
illness control ever wider. They have proposed a hypothetical model
that cannot be tested experimentally and it is this group of
psychiatrists who are the most assiduous advocates of the Mental
Health Movement in the UK, to the extent that, in the case of ME,
they have been shown to have created their own conclusions before
generating the data which would support such conclusions.

The prevalence of ME/CFS is higher than for multiple sclerosis,
which in the UK affects about 83,000 people; in January 2002 the
Report of the Chief Medical Officer's Working Group (see below) gave
a UK population prevalence of 0.2 - 0.4% (ie. up to 240,000
affected people). Certainly the incidence is known to be rising: as
long as a decade ago, UNUM (one of the largest disability insurers)
reported that in the five years from 1989 - 1993, disability claims
for this disorder increased by 460%. In terms of insurance costs,
ME/CFS came second in the list of the five most expensive
conditions, being three places above AIDS.

At the publication of the UK Chief Medical Officer's Working Group
Report on "CFS/ME" (see below), the Chief Medical Officer (CMO) went
on public record on BBC News on 11th January 2002 stating that the
treatment of "CFS/ME" must improve and that it should be classed as
a chronic condition with long-term effects on health, alongside
other illnesses such as multiple sclerosis and motor neurone
disease. It was not only Dr Fitzpatrick of Spiked who disagreed
with the CMO: the week after the CMO made his announcement, the
British Medical Journal (BMJ) highlighted the view of a prominent
member of the Wessely School (psychiatrist Michael Sharpe) that
doctors would not accept a particular strategy just because the
CMO's Report recommended it.

Whether ME and CFS represent the same disorder or are two different
entities has engaged many health care professionals, especially
certain psychiatrists, in an often hostile political battle. These
psychiatrists advise Government that ME does not exist as a separate
entity; that "CFS/ME" is one and the same disorder and that it is a
mental disorder which must be "managed" by mind-altering
psychotherapy, despite the fact that, accepting that CFS equates
with ME, international non-psychiatrist experts consider it to be a
physical (ie. organic) neuro-immunological disorder and that there
is a significant literature which supports an organic pathoaetiology.

In the UK, the primary duty of care for the sick has been displaced
in the fierce battle for supremacy waged by this group of
psychiatrists. Because personal status, competing personal
interests, commercial interests and massive funding issues are
involved, battle lines remain drawn and it is the patients who are
caught in the cross-fire. As Shakespeare noted: "As flies to
wanton boys are we to the gods; They kill us for their sport" (King
Lear, Act IV Scene I).

What is the "Wessely School"?

UK policy concerning ME is based on the intransigent beliefs of a
group of psychiatrists led by Simon Wessely, for years an adviser to
various Government Departments including the Ministry of Defence and
who is now Professor of Epidemiological and Liaison Psychiatry at
Guy's, King's and St Thomas' Medical School (GKT) based at King's
College Hospital (KCH) and at The Institute of Psychiatry (IOP); he
is also Director of the Chronic Fatigue Syndrome Research Unit and
of the Gulf War Illnesses Research Unit, both at King's. Other
leading members include psychiatrists Michael Sharpe (formerly of
Oxford and now at Edinburgh, where Alan Carson now collaborates with
him); Peter White (of St Bartholomew's Hospital, London); Anthony
David, Anthony Cleare, Stephen Reid and Matthew Hotopf of The IOP
and KCH and Richard Mayou, Keith Hawton and Christopher Bass of
Oxford. Trudie Chalder, a former Registered Mental Nurse, works with
Wessely and her name often appears on their publications and in
funding applications. Other supporters include Elena Garralda,
Professor of Child and Adolescent Psychiatry at St Mary's, London;
Tony Pelosi of Glasgow; Stephen Lawrie of Edinburgh; Alison Weardon
and Leonie Ridsdale, Senior Lecturer in General Practice at Guy's,
King's and St Thomas', London.

The stated aim of Simon Wessely is to "eradicate" ME from the
medical lexicon and to re-classify CFS as a mental disorder which
does not need biomedical research or explanation and which is to be
managed by a version of cognitive behavioural therapy which he
claims to have developed. His own commercial involvement in such a
management regime has been established (see below).

The certainty of these psychiatrists that they are right whilst
other researchers of international repute who disagree with them are
wrong, their power and their influence are destroying countless
lives, yet they continue to fly unscathed even in the face of
substantial evidence that calls their views into question.

Wessely School psychiatrists have built their careers and
reputations on denying the physical nature of ME/CFS, with the
result that untold numbers of chronically and seriously ill patients
are bullied, derided, threatened and driven to suicide by being told
that they are not physically ill but are suffering from "aberrant
illness beliefs".

The constant theme running through the work of this group of
psychiatrists is that CFS is a somatoform disorder and that factors
such as female gender, too much focus on normal bodily sensations,
specific personality traits, avoidance behaviour, learned
helplessness, faulty thought processes, lack of motivation,
inadequate coping strategies, interpersonal conditioning and
contagious sociological hysteria play an important role in the
perpetuation of the disorder.

Wessely School psychiatrists have been described in the eBMJ (N
Portman, 3rd December 2003) as "a small clique of undemocratic,
unaccountable, self-serving psychiatrists who have managed to
monopolise most of the research funding in this field and, thanks to
their prejudices, have been its downfall ever since".

Without doubt, the influence of Simon Wessely has resulted in a
cascade of horrors which most people in the UK do not know about and
when they do, they find scarcely believable.

It has taken 25 years for the notorious Professor Sir Roy Meadow to
be exposed and discredited as "world expert" on Munchausen's
Syndrome by Proxy, whose views Lord Howe described as "one of the
most pernicious and ill-founded theories to have gained currency in
childcare and social services in the past 10 to 15 years. It is a
theory without science. It rests instead on the assertions of its
inventor". The downfall of Meadow, who is finally to appear before
the Professional Conduct Committee of the General Medical Council,
serves to prove that a so-called "medical expert" whose views
apparently portray incontrovertible medical judgment and certainty
may, in fact, be wrong, but the damage done cannot be undone. So it
is with ME. It must not be allowed to take 25 years before the
views of the Wessely School on ME are subjected to similarly
rigorous public examination and exposure.

Many doctors and their non-medical managers still have misguided
ideas about medical negligence and believe that doing one's best is
all that matters or is required. This is not so in law and the
legal profession is about to become less deferential to the medical
profession.
(http://bmj.bmjjournals.com/cgi/eletters.327/7424/1118#41799)


The Opinion of an eminent Queen's Counsel has been obtained

A leading QC and member of the House of Lords was asked for an
Opinion on the Wessely School approach to ME: that Opinion is
unequivocal; it states: "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. A formal request should be made to
set up an enquiry. It is essential that a reputable firm of
solicitors should be instructed".

Are psychiatrists cruel?

Based in New York, Dr John Diamond is a founding member of The Royal
College of Psychiatrists. In an extract from his recent book (Facets
of a Diamond 2003) in the October 2003 issue of the journal "What
Doctors Don't Tell You", Diamond says "I am no longer a
psychiatrist. I renounce it because I believe cruelty is at the
core of the profession (and) I believe that there is something
inherent in the profession that tends to bring out any cruelty
lurking within. I have long wondered why this profession --- which
ought to be so compassionate - has, it seems to me, turned its back
on humanity".

A recent article in The Sunday Telegraph ("Trust me, I'm a
psychopath" by Alasdair Palmer, 30th November 2003) quotes Dr Robert
Hare, a Canadian professor of psychology, as saying "The psychiatric
profession and its associates are very reluctant to admit they are
wrong or that they have made a mistake".

Yet psychiatrists have powerful positions of control and ever more
credibility in so many areas: Simon Wessely and Anthony David were
funded by the US Pentagon (and came to the conclusion that Gulf War
Syndrome does not exist) and Wessely is involved with advising
NATO. Add to this the errors of mis-diagnosis made by psychiatrists
in the past (Parkinson's Disease, multiple sclerosis, epilepsy,
diabetes, thyrotoxicosis and many other disorders with a physical
causation have all been asserted by psychiatrists to be "mental"
disorders until medical science revealed their true aetiology) and
one has a right to despair at the current situation facing ME
patients.

Cont/ Jan 18

Posted by peter200015 at 10:50 AM EAST
Updated: Saturday, 7 August 2004 2:54 PM EADT
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