Williams 14th May 2005
Hopefully this clarification will
be the final arbiter of the discrepant assertions made publicly by Miss Ellen
Goudsmit PhD about the “London” criteria that the Medical Research Council
intends to use in the PACE trials on “CFS/ME”, the results of which will have
far-reaching implications for people with myalgic encephalomyelitis (ME).
Given the well-documented bias of the psychiatrists involved in the MRC PACE
trials, it is of serious concern that they will be using the “London” criteria
when those criteria have never been published and are not available as a
reference for identification.
- Miss Goudsmit continues to
claim that the “London” criteria were used by Costa et al in their 1995
paper and that it was this paper which operationalised the “London”
criteria. (The reference for the Costa et al paper is: “Brainstem
perfusion is impaired in chronic fatigue syndrome”. D C Costa, C Tannock
and J Brostoff: QJMed 1995:88:767-773).
- The Costa et al study in
question refers at reference 14 to “Criteria for a diagnosis of ME for use
in the ME Action funded research. Based on the criteria suggested by WRC
Weir in Post Viral Fatigue Syndromes by Jenkins and Mowbray, pp
- The Jenkins and Mowbray book
was published by John Wiley & Sons, Chichester in 1991
(“Post-Viral Fatigue Syndrome”. Edited by Rachel Jenkins and James
Mowbray. Published by John Wiley & Sons, Chichester, 1991. ISBN: 0
471 92846 1).
- In her IMEGA post of 8th
May 2005 Miss Goudsmit is unequivocal: “Costa did not refer to the
London criteria but to the ‘ME Action’ Criteria. The ME Action criteria
are the London criteria”.
- This accords with a ResAct post
in November 2004 by Miss Goudsmit, in which she stated: “Costa did not
refer to the criteria as the LC but he did refer to the criteria developed
by ME Action and guess what they are. People who wish to discredit
me are welcome to try but I don’t lie and that makes life a lot easier”.
- In her letter
to the UK Chief Medical Officer, Miss Goudsmit wrote in January 2002
about the Report of the CMO’s Working Group: “Dear Professor Donaldson,
I write as a specialist and researcher whose 20 years of knowledge and controlled
trial was ignored by the working group. As most of my fellow ME specialists
were ignored. Aside from the errors (e.g. wrong reference to the London
criteria, cited as 1990 but I did not think of them until 1993 let alone
compile them with colleagues…..We can do a lot for these patients. There’s
nothing like evidence-based evidence and this is nothing like evidence-based
- From her letter to the CMO, it
seems perfectly clear that she did not even think of the “London” criteria
until 1993 and indeed, in her formal response about the
“London” criteria dated 10th May 2005 (posted on IMEGA) about
her letter to the CMO, Miss Goudsmit states: “THIS IS NOT AN INCONSISTENCY
AS THE PUBLICATION IN QUESTION HAD AN INCORRECT REFERENCE AND I CORRECTED
IT” (ie. she corrected the reference to the date of the formulation of
the “London” criteria from 1990 to 1993).
- The Costa et al reference to
the ME Action criteria make it clear that the authors are referring to the
criteria suggested by Dr William Weir, and in her formal response dated 10th
May 2005 on IMEGA Miss Goudsmit states categorically: “IF ONE COMPARES
THE LC TO THOSE FROM WEIR, ONE SEES SOME NOTABLE DIFFERENCES. NO-ONE
COMPARING THEM WILL BE CONFUSED”, yet she persistently claims the ‘ME
Action criteria’ are the “London” criteria.
- To summarise: the Costa et al
reference relates to criteria for use by ME Action (now called Action for
ME) in a textbook that was published in 1991 but Miss
Goudsmit has claimed in writing that she didn’t even think of the “London”
criteria until 1993, so how can Miss Goudsmit now claim, as
she does, that the Costa et al reference to the ‘ME Action’ criteria
refers to the “London” criteria?
- They clearly do not: quod erat demonstrandum.
Miss Goudsmit’s many claims that
the Costa et al paper used the “London” criteria as operationalised criteria
cannot, therefore, be valid and she has apparently misled people about what has
become a very important issue in relation to the MRC PACE trials. Without
doubt, on the evidence available, she seems to have been involved in a
discrepancy, if not a deception.
Quite apart from the MRC issue,
there are wider implications: for example, despite Miss Goudsmit’s denial, it
is the case that Raymond Perrin has confirmed to two separate people that in
his study published in 1998 (this being another paper upon which Miss Goudsmit
relies to support her claim that the “London” criteria have been used in
published studies) he had assumed that the “London” criteria had
been published and that it was acceptable for him to use them because he had
been advised to use them by Dr Anne Macintyre of Action for ME and by Dr
Charles Shepherd of the ME Association, on whose advice he relied. (The
reference for the Perrin et al paper is “An evaluation of the effectiveness of
osteopathic treatment on symptoms associated with myalgic encephalomyelitis. A
preliminary report”. Perrin RN, Edwards J and Hartley P: Journal of Medical
Engineering and Technology: 1998:22:1:1-13).
The published study that Perrin
had been assured had used the “London” criteria and to which he referred in
his own paper was the Costa et al study referenced above, which as has been
shown, did not use the “London” criteria by a demonstrable time
factor of two years.
Note from MEActionUK Editor
It may interest people to know that Ellen's letter to the
Chief Medical Officer has since been mysteriously removed from the Axford's
Abode website and can no longer be found at...
... as you will see by clicking on the link above.