It is an established fact that the MRC has a secret file on ME
that contains records and correspondence since at least 1988,
which, co-incidentally, is about the time that Simon Wessely
began to deny the existence of ME.
The file is held in the UK
Government National Archives at Kew (formerly known as the
Public Record Office) and was understood to be closed until
2023, but this closed period has been extended until 2071, at
the end of which most people currently suffering from ME will be
conveniently dead
click here
As one puzzled ME sufferer recently noted: “why on earth have
a 73 year embargo on these documents on an illness where a load
of neurotic people, mostly women, wrongly think they are
physically ill?” (MEActionUK@yahoogroups.com;
14th October 2009).
The MRC’s secret
files on ME/CFS are closed (i.e.. unavailable to the public) for
an unusually lengthy period of 83 years. The standard closure
period is 30 years but, as in the case of these files on ME/CFS,
the standard closure period may be extended.
The 30-year rule
usually applies to documents that are exempt from release under
a Freedom of Information Act (FOIA) request and include, for
example, documents concerning the formulation of government
policy, documents related to defence, to national security, to
the economy, and documents that are considered very
confidential.
It may be
recalled that during the life of the Chief Medical Officer’s
Working Group on ME/CFS (1998-2002), lay members were ordered
not to discuss the deliberations and were even threatened with
the Official Secrets Act, for which no explanation was
proffered. A letter dated 16th June 2000 from Mrs
Helen Wiggins at the Department of Health NHS Executive
Headquarters in Leeds was sent to lay members of the Working
Group; this letter stressed that it had become increasingly
important that any documents or information, in whole or in
part, that might contribute to the report must be kept
confidential and to this end, members of the Working Group might
be compelled to sign the Official Secrets Act. This was
followed up by a letter dated 23rd October 2000 from
Lord Hunt of Kings Heath, then Parliamentary Under Secretary of
State at the Department of Health (ref: POH (6) 5380/83),
confirming that the information held by the Working Group might
in certain circumstances indeed be covered by the Official
Secrets Act.
If the
psychiatric lobby which dominated that Working Group was so
confident that it was correct about ME/CFS, 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 was
in marked contrast to the “Key working principles” set out in
the first Briefing Note of March 1999, which stated: “The
Group must have maximum ‘transparency’ i.e. as much information
about its activities to be distributed as possible to all
potential interested parties”.
One can but
wonder how the consideration of ME/CFS could rank as a state
secret and of what, precisely, was the Department of Health so
afraid that it even considered the use of such draconian
powers?
For the
record, Mrs Wiggins was replaced by Robert Harkins and it was he
who sent the letter dated 25th May 2004 (ref:
TO1056746) in which he stated that the then new centres for CFS
“will be headed up exclusively by psychiatrists”, which
was deemed to be more evidence of Government policy
on
“CFS/ME”.
People wishing
to access documents archived at Kew are able to make an
application to access documents that are not redacted or closed,
but the procedure is lengthy. Prior notification and advance
booking are required; people must remove their coats / jackets
and leave them, together with personal possessions including
handbags, in a locker with a see-through door for which a
numbered key is provided; proof of identity is mandatory and
every person is newly photographed on arrival.
Legitimate
access has been obtained to some of these archived documents
about ME/CFS and they make interesting reading, for example:
On 1st
June 1988, Dr Katherine Levy of the MRC sent an internal memo: “I
have got caught up in an enquiry from HORIZON on MRC support for
myalgic encephalomyelitis. Mrs Currie (Edwina Currie MP)
is on record…as saying the MRC is supporting nothing…I had a
preliminary word with the producer…she evidently wants to quote
us and…I do not want us quoted as saying we think we have
nothing….They would make a meal of it!”. Handwritten
comments state: “Is this not the Royal Free Hospital Syndrome
and perhaps of controversial status as a disease entity?”.
The handwritten comments continue: “I have also spoken to Dr
Swash (believed to be a member of the MRC Neurosciences and
Mental Health Board), who is among the agnostics along with…
Peter Thomas (believed to be Wessely’s co-author the late Dr
PK Thomas, a neurologist who is on record as describing ME
patients’ muscle weakness as ‘simulated’ in Recent
Advances in Clinical Neurology, 1990: pp 85-131) and others:
his view is that no research of any significance is being
undertaken on this topic in the UK…”. On 6th June
1988, a post-scriptum was added: “ PS I got away with no
mention of Radda, the Unit, or Oxford” (in 1984,
Professor Sir George Radda, as he later became when appointed
Chief Executive of the MRC in 1996, had published research using
nuclear magnetic imaging that confirmed a unique biochemical
defect in the way energy was being produced in an ME patient –
Lancet 23rd June 1984: 1367-1369). |
Another document
that has been obtained through legal means is a summary of the
CIBA Foundation Symposium on CFS that was held on 12-14th
May 1992 (reference S 1528/1). The letter “S” indicates that the
document is categorised as “Scientific” and the following
quotations come from the section entitled “HIGHLIGHTS”:
“Ned Shorter
(i.e.. Edward Shorter, the Hannah Professor in the History of
Medicine at the University of Toronto, a well-known disbeliever
in ME/CFS) fascinated the audience with his historical
perspective on how symptoms of disease without apparent organic
illness vary over time…Why is chronic fatigue (sic) so
appealing to patients and their doctors? One factor must be
that fatigue is difficult to disprove. There is a desire
among patients and doctors to upgrade their symptoms in order to
stay abreast of science. Virology and immunology are dynamic,
progressive branches of science, and patients are irresistibly
(sic) drawn to them in order to explain the mysterious origin
of their symptoms. This is evidence of a somatization disorder,
in which patients believe their symptoms, which are psychogenic
in origin, are evidence of organic disease…”. |
The section on
Epidemiology states: “CFS…is a collection of symptoms, not
a disease”.
The section on
“Muscle fatigue” records:
“Edwards (i.e.. Professor Richard
Edwards from Liverpool, on record as stating: “Many of the
biochemical changes during exercise and many of the symptoms of
these patients could be a consequence of their reduced habitual
activities” -- Ergonomics 1988:31:11:1519-1527)
concluded
that on physiological and pathological grounds, CFS is not a
myopathy; a primary role for psychological / psychiatric
factors was deduced from a formal comparison between CFS and
myopathy patients”. |
The section on
Virology states:
“The meeting concluded that exhaustive
analysis had failed to prove that CFS is caused by a virus or
viruses (and) members were increasingly drawn to the idea
that the search for a single identifiable cause of CFS is
meaningless…” |
The section on
Psychiatry states:
“Studies have shown that the relative risk
of psychiatric disorder is increased 2-6 fold in CFS cases
compared to controls with physical diseases. Various themes
emerged. One is of a subcortical dysfunction analogous to the
cognitive problems seen in illnesses such as Parkinson’s
disease. The most impressive evidence of CNS disturbance was
quoted by Wessely (Institute of Psychiatry) as coming from
neuroendocrinological studies, suggesting a role for
hypothalamic disorder as a final common pathway for CFS” |
(yet Wessely still maintains that “CFS/ME” is a somatisation
disorder).
The Psychiatry
section continues:
“Sharpe (Oxford) (i.e. Michael
Sharpe, one of the three PACE Trial Principal
Investigators)
described a trial of cognitive and behavioural
therapy which he is just starting at the Warneford
Hospital. The aim is to help patients
re-evaluate and, if appropriate, change, unhelpful
feelings about their performance and symptoms, and
thus break the vicious circle. He admitted that
the trial was a purely pragmatic approach without
theoretical foundation” |
(it
is interesting to see confirmation in an MRC document – and from
Sharpe himself -- that this study [BMJ 1996:312:22-26], one of
the most-relied upon in the “evidence-base” for CBT in the 2007
NICE Clinical Guideline, was merely pragmatic and without
theoretical foundation).
The section
titled “The Treatment Process” is particularly notable:
“The
first duty of the doctor is to support as much useful
function as possible and avoid the legitimisation of symptoms
and reinforcement of disability”. |
The Section
“General discussion” records:
“Shorter felt that from a
historical perspective, CFS was an example of a disordered
mind/body relationship that would not survive…It was
important to step back and look at the whole phenomenon of
somatization”.
“Summarising,
the Chairman (Kleinman) predicted that in 10 years time…the
central issues in the CFS field would be social rather than
medical or scientific, partly driven by the economics and
funding of the disability systems in various countries”.
|
Here, again, is
evidence that the problem of ME/ CFS is seen in terms of
economic costs to the nation and not in terms of alleviating
suffering.
Numerous
sections of this document are redacted and censored under FOI
exemption 40 (2) and are marked “CLOSED UNTIL 2071”.
Section 40 (2)
of the Freedom of Information Act usually relates to the
protection of personal information; this being so, a perfectly
straightforward telephone inquiry was recently made to the
National Archives at Kew with a view to establishing why so many
sections of a report of a scientific conference should be deemed
to be “personal information” and thus closed to the public.
Having been advised by staff at Kew to speak to their own FOI
department with this query, the questioner duly requested to be
transferred to that department, but when the subject of the
query was known, there was a long delay before the questioner
was put through, not to the FOI department as advised and
requested, but to a female member of staff who seemed very
agitated and who said that she dealt with these
particular enquiries. The questioner was barely permitted to
get a word in and was constantly interrupted by this member of
staff, who seemed to be reading at great speed from a prepared
text. When the questioner was finally able to ask why a report
of a scientific meeting should be deemed to contain personal
information, the result was a further lecture about how
important it is to protect personal information. No explanation
was provided in answer to the question posed, even when it was
pointed out that personal information in the form of names of
presenters at the symposium had not been redacted.
Given the
unconvincing sermon on the need to protect “personal
information”, it is notable that other documents in the MRC file
held at the National Archives make no attempt to do so, for
example, on 14th February 1997, Karen Finney of the
MRC sent a memo to Dr Bryant and Dr Coriat at the MRC, in which
she wrote:
“Chronic fatigue syndrome (CFS) and Mr Paul Hulme
(sic). On 15th January 1997 a query concerning
MRC support for ME was referred to me…I agreed to speak to the
member of the public, Mr Paul Hulme (giving his address and
ex-directory telephone number -- personal information which was
not redacted)…Mr Hulme wished to know if MRC was funding any
specific work on ME/CFS…In reply, I said I thought the MRC did
not receive many proposals on ME/CFS…However, Mr Hulme was aware
of a study supported by MRC and carried out at the Institute of
Psychiatry. He was not happy with the fact that MRC had
supported this work because ME ‘was a real illness and not
all in our mind’….Following my telephone conversation, I
asked Mr Goldstein (CAG) to run a search for applications on
CFS/ME that we had received over the last year, funded or
declined….Mr Goldstein’s search took a little while due to other
pressing matters…Between 15/1 and 7/2 Mr Hulme rang on average
twice a week to ask about progress. When Mr Hulme rang on 7/2 I
let him know, in general terms…that during 1996 we had received
four applications which had been declined on scientific
grounds…Mr Hulme requested that I put the result of the search
in writing…I am aware that the follow-up letter requires
careful drafting…Mr Hulme telephoned again on 13/2 to say
that he needed my letter urgently (as) he intended to fax a
letter to Ken Calman (Sir Kenneth Calman, UK Chief Medical
Officer) concerning the Council’s lack of support for the
area, and also other issues surrounding the RCP review (the
1996 Joint Royal College’s Report CR54). Dr Davies and the
Press Office have been kept informed of developments. I
think that a carefully worded letter of reply from someone
higher up in the Office might put this matter to rest”.
|
It is hardly surprising that the ME/CFS community believes that
there is no intention to address the psychosocial bias of the
Wessely School and the damage that such bias causes to those who
are physically sick, especially given that the MRC Portfolio in
Mental Health Research stated “Mental health in this instance
covers…CFS/ME” (Neurosciences Mental Health Board Strategy
and Portfolio Overview Group Scoping Study, January 2005). When
challenged, the MRC subsequently stated CFS/ME was classified as
a mental health problem for a “pragmatic” reason that was
claimed to be “related to the grants classification
associated with the activities of one section of the office”
(letter dated 6th December 2005 from Dr Robert Buckle
at the MRC -- a member of the PACE Trial Steering Committee --
whose letter continued: “The Mental Health Scoping Study
included the PACE and FINE trials on the basis of the type of
intervention being assessed, namely psychological
interventions…”.
Members of MRC Boards are appointed to act “as a core body of
scientific advisors, assessing applications to the MRC”. The
MRC’s refusal to accept the international biomedical evidence
about ME/CFS may be related to the fact that in 2002 / 2003 the
following Wessely School members were appointed to MRC Boards:
Professor Trudie Chalder; Professor Anthony Cleare; Professor
Anthony David; Professor Anne Farmer, Professor Michael Sharpe,
Professor Peter White; Professor Richard Bentall; Professor
Philip Cowen; Professor Til Wykes and Dr SM Laurie, with
Professors Simon Wessely and Francis Creed having been recent
members(http://webarchive.org/web/*/http://www.mrc.ac.uk
). Wessely was a member of no less than three MRC Boards: the
Health Services and Public Health Research Board; the
Neurosciences and Mental Health Group and the Monitoring and
Evaluating Group (MESG).
As Dr Jonathan Kerr, Sir Joseph Hotung Senior Lecturer in
Inflammation, Department of Cellular and Molecular Medicine,
Hon. Consultant in Microbiology, St George’s University of
London, stated at the Invest in ME Conference held in London in
2006:
“It is rather sad that the MRC does not fund any biological
studies such as we are doing, and I think the
current…consideration of grant applications to the MRC on CFS is
currently with the Neurosciences and Mental Health Board…and I
think that (this) immediately biases the decision-making process
because that panel is made up predominantly I believe of
psychiatrists. It would be desirable if this could be
reclassified (by the MRC) such that there would be money
available…for biological approaches…It is a fact that currently
the MRC does not fund any biological approaches”. |
At the 2007 Invest in ME Conference, Dr Kerr repeated his
message:
“We have applied several times to the MRC and on each
occasion we were invited to submit those applications and on
each occasion we got scores typically of 9, 8 and 3 – the 3
score was obviously from a psychiatrist who was complaining
about our way of enrolling the patients, the criteria we had
etc…David Tyrell told me the MRC will never fund biomedical
research in CFS because they are in the thrall of the
psychiatrists – so far, he has been right”. |
DVDs of both these Conferences are available from
www.investinme.org
(click here)
The late Dr David Tyrell, CBE, FRS, DSc, FRCP, FRCPath was
Chairman of the UK National Task Force on CFS/PVFS/ME whose 1994
Westcare/DoH Report was rejected by the Wessely School and gave
rise to their own 1996 Joint Royal College’s Report (CR54) that
denied the existence of ME. In his Foreword to the 1994 Task
Force Report, Tyrell wrote:
“We have no doubt that such
conditions exist and cause suffering and disability. We discuss
the issue of nomenclature at some length for it is not just a
semantic problem. It encompasses serious disagreements, which
have sadly led to ill will and abusive remarks on such questions
as whether the syndrome exists, whether it is ‘real’ or
‘organic’ or ‘merely’ psychological…it is important
that…administrators, clinicians, scientists, funding agencies
and patients identify the topics in their field on which action
is needed…(and) the research community should be developed and
strengthened. But we should be prepared for the long haul”.
|
It has certainly been “a long haul” because 15 years
later, despite approximately 5,000 published mainstream papers
that prove them wrong about the nature of ME/CFS, the Wessely
School remains obdurate that “CFS/ME” is a somatisation
disorder.
![](images/mrcy.jpg)
|