The “London” criteria: QED
Margaret 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 248-9”.
- 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 (http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Goudsmit%20Letter-CMO.doc)
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 medicine”.
- 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
It may interest people to know that Miss Goudsmit’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...
http://freespace.virgin.net/david.axford/letter11.htm
... as you will see by clicking on the link above.