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