Pacing and Exercise in Chronic Fatigue Syndrome ----------------------------------------------- by Charles Shepherd MD Medical director, ME Association bron: Physiotherapy datum: August 2001/ vol 87/ no 8 A good clinical outcome in some chronic fatigue syndrome/ myalgic encephalopathy (CFS/ ME) patients following graded exercise therapy is reported in the June issue of Physiotherapy (White and Naish, 2001). But these results are in marked contrast to feedback that has been received by patient support groups in relation to similar treatment programmes which are being carried out in non-specialist centres. Three national support groups --The ME Association, Action for ME and the 25% Group --recently carried out a treatment audit among their membership involving self-reported outcomes of a wide range of pharmacological , non-pharmacological and alternative approaches to management of CFS/ ME. Results from all three questionnaires --which have now been submitted to the Chief Medical Officer's Working Group on CFS/ ME --indicate that there are major concerns about the use of graded exercise. The largest questionnaire (with 2,338 respondents) found that out of 1,214 who had tried graded exercise, 417 believed it had been helpful, and 187 reported no change. However, a disturbing 610 respondents (around 50%) stated that graded exercise had made their condition worse. No other treatment being assessed achieved such a high negative rating in any of the questionnaires. Given this clear divergence in response to graded exercise, there are a number of factors which may help to explain the unacceptably high drop-out rates reported in all three published trials, as well as the adverse reactions reported in the questionnaires. First is the fact that CFS/ ME is undoubtedly a very heterogeneous disorder when it comes to both clinical presentation and possible patho-aetiology. So while there are patients at one end of the spectrum who fit with the commonly quoted psychiatric model of inactivity and depression leading to abnormal illness beliefs and/ or behaviour, there are others in whom there is evidence of neuromuscular pathology (Lane, 2000) and no psychiatric co-morbidity. Second is the way in which many of these patients are already functioning at or near their levels of maximal physical performance (the 'glass ceiling' effect). And as has recently been reported in a study involving maximal exercise performance (Bazelmans et al, 2001), there is no evidence to support the widely-held assumption that deconditioning is a perpetuating factor in CFS/ ME. Third is the disturbing manner in which some health professionals are implementing graded exercise regimes for CFS/ ME patients. In our experience, programmes which are inflexible and recommend consistent increases in physical activity regardless of how the patient is feeling are an extremely frequent cause of relapse and refusal to co-operate any further. This view is supported by research (Lapp, 1997) which indicates that over-ambitious exercise can easily precipitate a significant and sustained period of relapse. As doctors have now been advised by their Medical Defence Union that prescriptions for exercise must be given with just as much care as those for medication, it is not surprising to find that some CFS/ ME patients who relapse following badly organised graded exercise programmes are now contemplating litigation. Despite having deep concerns over the current application of graded exercise programmes, the ME Association is very much in favour of encouraging patients to carry out gradual increases in physical and mental activity once their condition has stabilised. This process, commonly known as pacing, does however take into account the considerable fluctuations in symptom severity that occur in CFS/ ME. Pacing also accepts that appropriate periods of rest and relaxation have an equally important role to play in the rehabilitation of patients with this complex and controversial illness. In the largest support group questionnaire 1,949 respondents found pacing helpful, 201 reported no change, and 30 stated they were made worse. These results indicate that pacing is a highly acceptable and effective approach to activity management in CFS/ ME. References Bazelmans, E, Bleijenberg, G, Van Der Meer, J W M and Folgering, H (2001). 'Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity', Psychological Medicine, 31, 107-114. Lane, R (2000). 'Chronic fatigue syndrome: Is it physical? ' Journal of Neurology, Neurosurgery and Psychiatry, 69, 280. Lapp, C W (1997). 'Exercise limits in chronic fatigue syndrome', American Journal of Medicine, 103, 83-84. White, P D and Naish, V (2001). 'Graded exercise therapy for chronic fatigue syndrome', Physiotherapy, 87, 285-288. Address for Correspondence Dr Charles Shepherd, Medical Director, ME Association, 4 Corringham Road, Stanford-le-Hope, Essex SS17 OAH (tel 01375 642466).