Eileen
Marshall Margaret Williams
18th
June 2005
In her reply dated 16th June 2005 to Mrs Connie
Nelson (who had requested clarification concerning at what stage the “London”
criteria are to be used within the MRC PACE trial and what evidence supported
the use of the “London” criteria for secondary analysis within the trial),
Sarah Perkins (Programme Manager, MRC Neurosciences and Mental Health Board)
stated: “The main entry criteria for the
PACE trial are the Oxford criteria….The exclusion criteria of “proven organic
brain disease” will be used to exclude neurological conditions of established
anatomical pathology such as Parkinson’s disease and multiple sclerosis. It will not be used to exclude patients
with a diagnosis of ME”.
As Ms Perkins is aware, the Oxford criteria expressly
exclude participants with organic brain disease, so would she be kind enough to
clarify the following:
1.
why the MRC is adopting special pleading in relation to
ME, when ME is a classified neurological disorder in the ICD and has been so
classified since 1969
2.
on what scientific evidence-base the MRC is relying to
enable it to disregard this international classification that has been approved
by the World Health Assembly
3.
on what evidence–base the MRC is relying to permit it
to disregard recognised research procedure by implementing its own selective
modification of the Oxford criteria
4.
why it is acceptable to the MRC to disregard the
substantive body of scientific evidence of neurological compromise in ME in
favour of unsubstantiated beliefs of certain psychiatrists
5.
given that these psychiatrists seem to be financially
encouraged to demand 100% proof of an organic pathoaetiology for ME before they
will “allow” it to be accepted as an “real” organic disorder as distinct from a
mental disorder, why the MRC does not equally require a similar standard of
proof from these psychiatrists that ME is a mental disorder as they believe, given
that these psychiatrists appear to be permitted automatically to reject the
convincing evidence of multi-system damage yet have not provided any convincing
counter-evidence that refutes such evidence
6.
given that in 2003, Members of
Parliament so excoriatingly criticised the MRC (see House of Commons Science
and Technology Committee: The Work of the Medical Research Council. Third
Report of Session 2002-03, 24th March 2003: HC132), why the MRC is
content to continue to support policies and fund projects that are likely to
perpetuate such criticism when, for example, gene research is demonstrating
that these psychiatrists (whose beliefs about ME the MRC is on record as
supporting) have already been shown to be comprehensively wrong about ME
7.
in view of the submissions for funding of biomedical
aspects of ME that the MRC is known to have rejected on the claimed grounds
that they were not of sufficiently rigorous quality, what is the explanation
for the seemingly more lax standards required for psychiatric research projects
such as the PACE trial (for example, not only the selective modification of the
published criteria but also the deliberate inclusion of participants who, from
the outset, are known to suffer from fibromyalgia, a separately classified
disorder that is not ME).
It cannot be repeated often enough that what Wessely
School psychiatrists choose to call “CFS/ME” is not ME/ICD-CFS (a term used
because ME is also known in the ICD as “CFS”) and should not therefore be
described in their studies and results as pertaining to ME/ICD-CFS. To do so is both a failure of their
professional responsibilities to patients and a corruption of the scientific
process.
Whilst on the subject of apparent discrepancies in matters
relating specifically to ME, it is noted that in a Co-Cure post dated 17th
June 2005, Vivienne Parry (Administrator of the Great Universal Stores (GUS)
Charitable Trust that is currently funding the PRIME project) denies that
she has worked with psychiatrist Professor Simon Wessely (who is notorious
for his view that ME is a somatoform disorder that is perpetuated by an aberrant
belief), stating: “It’s been alleged
that I have worked with Simon Wessely. I
have never even met him” and Ms Parry is also on record on other internet
sites as affirming: “I’ve never actually met him and have certainly not worked
with him – a fact the Science Media Centre will confirm to you tomorrow”. Is this not curious, given that Simon Wessely
sits on the Science Advisory Panel of the Science Media Centre, of which Ms
Parry is a member of the Board?
Members of the long-suffering ME community may require
their respective Members of Parliament to seek until they obtain believable
explanations for such remarkable discrepancies.