MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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In her communication of 16 th June 2005 (referred to above), Sarah Perkins from the MRC stated: “The
investigators have also chosen to ascertain which other definitions participants fulfil. The ‘London criteria’ for ME are
described in the National Task Force report (1994). These criteria are based on the original description of ME by Dr
Melvin Ramsay (1978)…They have validity for some patients and clinicians but have not to our knowledge been used
in any major research studies. I should emphasise that the London criteria will not be used as an inclusion criteria (sic)
but will be used as predictors of response to treatment”.
It is a straightforward fact that if those with a classified neurological disorder are excluded from the
outset by virtue of the Oxford entry criteria, no amount of “secondary analysis” will reveal those with a
classified neurological disorder.
Professor Peter White informed the Joint Trial Steering Committee and Data Monitoring and Ethics
Committee on 27 th September 2004 that the London criteria have not previously been used in research.
That is unsurprising, since the “London criteria” do not formally exist (although the PI’s own version is
provided on page 188 of the Full Protocol).
White was incorrect, because Jason et al used one of the several versions of the proposed (but unpublished)
“London criteria” in the paper “Variability in Diagnostic Criteria for Chronic Fatigue Syndrome May Result
in Substantial Differences in Patterns of Symptoms and Disability” (Eval Health Prof 2003:26(1):3‐22).
The reference for the “London criteria” given by the PACE Trial Investigators (reference number 31 in the
full Protocol and reference number 40 in the abridged Protocol) cites in both versions: “The London criteria,
quoted in The National Task Force Report on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS)
and Myalgic Encephalomyelitis (ME). Bristol. Westcare; 1994”.
That is misleading, because The National Task Force Report states on page 89: “Recently IFMEA
(International Federation of ME Associations), Action for ME and the ME Association have proposed ‘London
criteria’ for ME/PVFS”. Thus the “London criteria” were merely proposed criteria and were never ratified.
Confusingly, the Chief Medical Officer’s Working Group Report on CFS (2002) refers on page 76 in its
Appendix II (Existing Diagnostic Criteria) to the “London criteria” and explains that they were “Derived from
Dowsett & Ramsay”. However, the Dowsett and Ramsay paper in question does not mention the term
“London criteria” (Myalgic encephalomyelitis – a persistent enteroviral infection? Postgrad Med J
1990:66:526‐530). Dowsett and Ramsay simply said they “adopted the following clinical criteria” for the
selection of patients for that one study, which does not constitute “existing diagnostic criteria”.
Moreover, the misleading reference for the “London criteria” which appears in the CMO’s Working Group
Report (the alleged Dowsett and Ramsay definition) is not the reference given by the PACE Trial
Investigators, which is the National Task Force Report, which simply refers to the proposed “London
criteria”.
The NICE Clinical Guideline on CFS/ME (CG53) Draft for Consultation of September 2006 also referred to
the “London criteria” as though they actually exist (“Dowsett ME”, reference number 12 and Perrin et al,
reference number 199 – see below), whilst the final version of the Guideline briefly mentioned “Dowsett
ME” on page 144 but did not include the Perrin et al paper.
The issue of case definition to be used by the MRC for “secondary analysis” is of cardinal importance, yet
the provenance of the “London criteria” has not been established and they have never been published in
any medical journal. There is no methods paper which specifically describes them as a “case definition”;
they have never been approved nor have they even been finally defined (there are various versions); they
have never been operationalised or validated and despite there being much internet traffic about the alleged
authorship, it remains uncertain who the authors are.