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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
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