by Dr Charles Shepherd, Hon Medical Adviser, The ME Association:
The disappointing results for adaptive pacing therapy (APT) in the PACE trial (1) do not reflect the feedback from the majority of published patient surveys, including ours (2), where pacing was reported to be one of the three most helpful strategies in managing ME/CFS.
The likeliest explanation is the difference between APT and the form of pacing advocated by most of the patient support groups around the world. Our version of pacing is evidence-based so it does not require patients to function well below their ability and adhere to the 70% rule, an important component of APT. It is based on clinical experience dating back to the 1950s and supported by several controlled trials showing that pacing limits post-exertional exacerbations and improves functioning over time (3). More significantly, it avoids the documented immunological and metabolic abnormalities following over-exertion (4) which are increasingly recognised as a contra-indication for graded exercise therapy (GET).
The fact that the findings of the PACE trial could result in pacing being removed as a treatment option within the NHS is just one of many concerns. The exaggeration of the outcomes, especially in the media (5), deserves to be challenged, particularly as the findings from the trials on GET are inconsistent with almost every patient group survey and audit conducted.
Dr Charles Shepherd
Hon Medical Adviser, The ME Association
7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF
1 White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet Feb 17 2011 [Epub ahead of print]
2 ME Association. Managing my ME. What people with ME/CFS and their carers want from the UK’s health and social services. http://www.meassociation.org.uk?page_id=1345
3 Brown M, Khorana N, Jason LA. The role of changes in activity as a function of perceived available and expended energy in non-pharmacological treatment outcomes for ME/CFS. Journal of Clinical Psychology 2011, 67, 253-260
4 White PD, Nye KE, Pinching AJ, Yap TM, Power M et al. JM. Immunological changes after both exercise and activity in chronic fatigue syndrome: A pilot study. Journal of Chronic Fatigue Syndrome 2004; 12: 51-66
5 Got ME? Just get out and exercise, say scientists. The Independent 18 February 2011