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

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To imply that patients can recover from ME/CFS if they would only follow the psychiatrists’ recommended
regime of CBT/GET offers false hope: the recovery statistics simply do not support such a belief.
The promise of a likely cure through CBT and GET is a cause for concern and Professor Peter White has
been warned on numerous occasions about making such a promise.
For example, in his submission about the NICE draft Guideline (24 th November 2006, comments on chapter
6, page 308), Peter White objected to NICE’s position concerning recovery from “CFS/ME”; referring to the
draft Full Guideline 188 6.3.6.16, he was unambiguous: “These goals should include recovery, not just
exercise and activity goals”, to which the NICE Guideline Development Group’s response was equally
unambiguous: “The statistics indicate that total recovery is relatively rare and the GDG felt that to include recovery
as a goal may lead to disappointment” and, as noted above, the Final Guideline was clear: “The GDG did not
regard CBT or other behavioural therapies as curative or directed at the underlying disease process” (Full
Guideline, page 252).
Not only did the Chief Medical Officer’s Working Group Report of 2002 state that there is no recovery from
“CFS/ME” (4.4.2.2.48), from which Peter White and Trudie Chalder resigned because “….some clinicians
believed that the report over‐emphasised the severity and chronicity of CFS to the extent of suggesting that recovery
was unlikely, when the evidence shows that not to be true”, nor did NICE accept Peter White’s belief that he
can cure people and – perhaps surprisingly, given that he is lead advisor on “CFS/ME” ‐‐ neither does the
Department for Work and Pensions. The Disability Handbook (2 nd edition, 1998) is being revised chapter by
chapter, and Chapter 16 (“The Chronic Fatigue Syndrome”) of May 2007 states: “There is no cure” (16:
Management: 16).
As the issue is so important, it is worth reiterating that:
• according to US statistics provided in August 2001 by the Centres for Disease Control CFS
Programme Update, only 4% of patients had full remission (not recovery) at 24 months
• in 2005, the message was: “The bitter, unpalatable reality is that ME/CFS patients can be pro‐
active, they can have a good attitude, they can try various drugs and non‐drug interventions, and
they can still remain ill, even profoundly disabled” (The CFIDS Chronicle Special Issue: The
Science & Research of ME/CFS: 2005‐2006:59)
• in 2007, the ME Association Medical Advisor pointed out that: “Several research studies looking at
prognosis have been published. Results from these studies indicate that ME/CFS often becomes a chronic and
very disabling illness, with complete recovery only occurring in a small minority of cases. A recent
Systematic Review of 14 studies found a median recovery rate of 7%” (ME/CFS/PVFS: An exploration of
the key clinical issues prepared for health professionals. Drs Charles Shepherd & Abhijit
Chaudhuri, published by The ME Association, 2007).
(3) Whilst declining to carry out any subgrouping of “CFS/ME” (which would not accord with their
intention to include as heterogeneous a population as possible), the PIs propose to carry out a secondary
analysis of the data by using criteria that do not officially exist (the “London” criteria, which have been
addressed above) as well as the CDC 1994 criteria (which also include psychiatric patients and do not
specifically identify patients with discrete ME). If the PACE Trial entry criteria had been rigorously applied,
no amount of secondary analysis would reveal those with discrete ME.
(4) The Investigators diluted the entry criteria after the PACE Trial had commenced by moving the SF‐36
(physical function score) goalposts and by including people who had previously undergone CBT/GET.
Originally, the SF‐36 cut off point was set at 75 (Trial Identifier: 3.6) and those who had previously
undertaken CBT/GET were excluded from the PACE Trial. However, on 9 th February 2006 Peter White