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

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248<br />

S<strong>in</strong>ce the “London criteria” have never been published, they have no authors as far as the real world is<br />

concerned.<br />

Notwithstand<strong>in</strong>g, claims were made on the <strong>in</strong>ternet by one of the purported authors of the proposed<br />

“London criteria” that they had been operationalised, and that five published studies had used them. Those<br />

studies were alleged to be:<br />

(i) Costa, Tannock and Brostoff (Q J Med 1995:88:767‐773), which makes no mention of the “London criteria”<br />

but does cite as reference 14 “Criteria for a diagnosis of <strong>ME</strong>…based on the criteria suggested by WRC Weir <strong>in</strong><br />

Postviral Fatigue Syndrome by Jenk<strong>in</strong>s and Mowbray, pp 248‐249”. The Jenk<strong>in</strong>s and Mowbray textbook sets out<br />

Dr William Weir’s own modification of the Holmes et al 1988 criteria and is virtually identical to the<br />

subsequently proposed “London criteria” set out <strong>in</strong> the National Task Force Report<br />

(ii) Raymond Perr<strong>in</strong> (an osteopath) claimed <strong>in</strong> a 1998 study for his PhD that he had used both the 1994 CDC<br />

criteria and the “London criteria” (J Med Eng Technol 1998:22:1‐13). When contacted, he expressed surprise<br />

because he had been led to believe that the “London criteria” had been published and validated. He<br />

confirmed that he had accepted assurance from someone connected with Action for <strong>ME</strong> that the “London<br />

criteria” had been published, an assertion that orig<strong>in</strong>ated from the same person who made other claims for<br />

the “London criteria”. Mr Perr<strong>in</strong> confirmed that he would have to amend his thesis<br />

(iii) Paul L et al (European Journal of Neurology 1999:6:63‐69), which did not mention the “London criteria”;<br />

the authors state: “The patients… fulfilled established criteria for CFS (Fukuda et al, 1994)”<br />

(iv) Whit<strong>in</strong>g et al (The York Systematic Review: JAMA 2001:286:11:1360‐1368), which did not mention the<br />

“London criteria”<br />

(v) McCue, Scholey and Wesnes (Proceed<strong>in</strong>gs of the British Psychological Society, 12 th January 1999); this<br />

was a poster presentation at a BPS Conference, which does state that the 20 patient satisfied the “London<br />

criteria”, although the criteria were not def<strong>in</strong>ed <strong>in</strong> the abstract. Poster presentations are not published<br />

studies. Direct personal contact was made with Professor Andrew Scholey, who confirmed that his work on<br />

<strong>ME</strong> had not been published.<br />

The key po<strong>in</strong>t about the <strong>in</strong>tended use of the “London criteria” by the PACE Trial <strong>Invest</strong>igators is that<br />

they are not on PubMed and are not available for scrut<strong>in</strong>y. How is it possible for the MRC to claim<br />

scientific validity by us<strong>in</strong>g criteria that do not formally exist and which cannot be accessed for<br />

comparison? Is this the “high standard of excellence” claimed by the MRC?<br />

The PIs specifically predict <strong>in</strong> the Protocol that those who satisfy the “London criteria” will do less well,<br />

but how is it possible to enter <strong>in</strong>to a statistical model a covariate based on a case def<strong>in</strong>ition that has never<br />

been published and does not formally exist?<br />

This appears to amount to significant <strong>in</strong>ternal <strong>in</strong>consistency.<br />

Of importance is what the PIs state about their “London criteria for <strong>ME</strong>” on pages 188 ‐ 190 of the Full<br />

Protocol (note that whilst some patients do experience t<strong>in</strong>nitus, it is not a card<strong>in</strong>al symptom of <strong>ME</strong>):<br />

“Criteria 1 to 4 must be met for a diagnosis of <strong>ME</strong> to be made.<br />

1. Exercise‐<strong>in</strong>duced fatigue precipitated by trivially small exertion (physical or mental)<br />

2. Impairment of short‐term memory and loss of powers of concentration, usually coupled with other [neurological or<br />

psychological] disturbances…[NB These symptoms should be asked for as symptoms…These symptoms <strong>in</strong> (a –<br />

e) should be recorded, but are not necessary to make the diagnosis]:

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