Re: Tackling fears about exercise is important for ME treatment, analysis indicates
In their rapid response, Professors Trudie Chalder and Peter White et al state: “in an illness where exercise increases symptoms, we believe that being cautious about engaging in activity is understandable” (1).
Do the PIs mean by this that they themselves believe caution is necessary, or do they mean that they understand why patients are cautious about engaging in activity?
In order to avoid “intellectual embarrassment” (2), as Chief Principal Investigator of the PACE trial, could Professor White explain this apparent change of direction because, referring to “exercise treatment” in chronic fatigue syndrome, he is on record as advising patients with CFS to continue exercising regardless of symptoms: “If patients complained of increased fatigue they were advised to continue at the same level of exercise for an extra week….All patients were instructed to continue with regular exercise” (3).
For the avoidance of doubt, Professor White has declared categorically that he believes “CFS/ME” to be a behavioural disorder (4) and the PACE trial Therapists’ Manual on CBT is clear that they were actively to discourage participants from seeking medical advice about symptoms they developed during the trial: participants were encouraged “to hold off having further investigations until after they have completed a course of CBT” (5).
The Therapists’ Manual on GET is equally forthright: “Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology” (6).
Such directives are very far from “being cautious about engaging in activity”.
Furthermore, perhaps Professor White could explain another post-hoc change of direction in the PACE trial.
The PIs received ethical approval to study what they themselves referred to as CFS/ME: the Patient Clinic Leaflet that encouraged patients to become PACE Trial participants stated: “Chronic fatigue syndrome” is “also known as post-viral fatigue syndrome, myalgic encephalomyelitis (ME) or myalgic encephalomyelopathy (ME)…..Medical authorities are not certain that CFS is exactly the same illness as ME, but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness” (7).
However, just after publication of selective results of the PACE trial in The Lancet online in February 2011 Peter White wrote to the senior editor of The Lancet in the following terms: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME” (8). Professor White was, however, funded to the tune of £5 million to study “CFS/ME” (9).
Such inconsistencies leave not only patients but also their clinicians at a loss.
3. Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome. Kathy Fulcher, Peter D White. BMJ 7th June 1997:314:1647-1652
4. Personal communication
5. PACE trial Therapists’ Manual on Cognitive Behavioural Therapy
6. PACE trial Therapists’ Manual on Graded Exercise Therapy
Competing interests: No competing interests