Sir,
The UK National Institute for Clinical Excellence (NICE) guidelines on the management of CFS/ME recommends that we should “offer cognitive behavioural therapy (CBT) and/or GET to people with mild or moderate CFS/ME, and provide them for those who choose them, because these are the interventions for which there is the clearest research evidence of benefit” (13). The full guidelines go on to state that “unsuccessful general exercise programmes, perhaps undertaken independently by the patient, or under brief advice from professionals Letters to the Editor 185 not adequately trained in the use of GET, are often begun at a high, unachievable level, with an inappropriately rapid rate of progression, or without adequate professional supervision or support. An unstructured and poorly monitored or progressed exercise programme can cause significant symptom exacerbation, and can arguably make CFS/ME worse” (13).
This view agrees with the one patient charity survey that attempted to explain the discrepancy in adverse effects of GET between published research and patient charity member surveys. “When those who had had GET in the last 3 years were examined in more depth, a high proportion had never in fact [received] GET as reported in research studies.... This appears to show that outside the major ME centres, who does it and to what standard is a lottery. Suggesting that the issue may not be the value of GET, but what type and the quality of the therapist. This would certainly support the evidence given to the Chief Medical Officer’s (CMO) Report, and, if true, could explain why harm is not found through research trials (conducted in the best centres), but is found through surveys of people’s experiences – few having had access to the best centres” (14). Any effective medical intervention that is improperly given may cause harm. We believe the issue here is not the safety of GET, but its proper implementation and availability. The NICE guidelines provide an excellent description of how to carry out GET safely and effectively (13).
As to our own pilot study, suggesting that acute aerobic exercise (not GET) may be associated with elevated concentrations of certain cytokines (10), we are currently undertaking a proof of principle study. Finally, the PACE trial (
www.pacetrial.org) is the largest ever trial of GET for patients with CFS/ME, and adaptive pacing therapy is one of the comparison treatments (15). We will soon have even more data that tests both the efficacy and safety of GET when compared with other non-pharmacological interventions; the main results are expected in 2010.
Lucy V. Clark, PhD* and Peter D. White, MD From the Barts and the London School of Medicine & Dentistry, Queen Mary University of London, Wolfson Institute of Preventive Medicine, PACE Trial Office, Suite 3.1, Dominion House, 59, Bartholomew Close, London, EC1A 7ED, UK. *E-mail:
l.clark@qmul.ac.uk