Date sent: Tue, 23 Oct 2001 Charles Shepherd: BMJ response to Simon Wessely quotes Source: Charles Shepherd (Medical Director, ME Association) Date: October 22, 2001 Ref: http://listserv.surfnet.nl/SCRIPTS/WA.EXE?A2=ind0109E&L=me-net&P=R552 PATIENT ADVOCATES HAVE GENUINE CONCERNS ABOUT THE VALUE OF GRADED EXERCISE THERAPY AND COGNITIVE BEHAVIOUR THERAPY IN CHRONIC FATIGUE SYNDROME ------------------------------------------------------------------- Dr Charles Shepherd, Medical Director, ME Association, 4 Corringham Road, Stanford-le-Hope, Essex SS17 OAH EDITOR - The news item (1) relating to findings of two systematic reviews of treatment interventions for chronic fatigue syndrome (CFS) contains a very unbalanced account of the way in which patient organisations such as The ME Association view the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) in chronic fatigue syndrome (CFS). Whilst having no desire to stigmatise people with mental illnesses, we do, however, believe that CFS is a heterogeneous disorder both clinically and pathologically. As a result, it is not possible to make blanket recommendations regarding the best form(s) of treatment for each individual patient. Our main reason for questioning the benefits of CBT and GET relates to the 'evidence' of efficacy. As the two systematic reviews point out, there have only been a very small number of randomised controlled trials (RCTs) which have demonstrated benefits. These RCTs have been rightly criticised for selection bias, high drop-out rates, poor choice of control groups, and in some cases only minimal overall improvement or no satisfactory evidence of benefits being sustained. In addition, results from these RCTs are not consistent with feedback from three large treatment questionnaires which have been presented to the Chief Medical Officer's Working Group on CFS/ME. In the case of CBT, our own survey (respondents = 209) found 13% were 'made worse'; 32% experienced 'no benefit'; 37% were helped 'a little'; and 18% were helped 'a lot'. With GET (respondents = 113), a disturbing 39% were 'made worse'; 22% experienced 'no benefit'; 26% were helped 'a little'; and 13% were helped 'a lot'. The results relating to graded exercise were the most negative of any treatment intervention being surveyed. As a result, we would strongly disagree with Simon Wessely's conclusion that "People who have tried CBT and GET have high levels of satisfaction". A more accurate conclusion would be that some people report a degree of improvement with CBT but the benefits of GET are far more controversial with a significant proportion of patients experiencing a relapse when this is inappropriately administered. We also believe that there are serious flaws with the hypotheses on which both of these treatments are supposed to work. Graded exercise programmes which advocate progressive increases in activity regardless of how the patient is feeling assume that CFS is perpetuated by deconditioning, yet the most recent research into physiological functioning (2) indicates that this is not the case. CBT programmes often assume that CFS is perpetuated by abnormal illness behaviour and beliefs, yet most people with CFS are well motivated and have no obvious psychiatric co-morbidity. The ME Association would certainly welcome closer co-operation between members of various disciplines involved in the CFS debate (we do in fact have a consultant psychiatrist on our medical advisory panel), but comments such as those from Simon Wessely may do more harm than good in achieving such an alignment. Yours sincerely Charles Shepherd. 1 Kmietowicz Z. Exercise and cognitive behaviour are best treatments for chronic fatigue syndrome. BMJ 2001;323:710. (29 September.) 2 Bazelmans E, Bleijenberg G, Van Der Meer JWM, Folgering H. Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations to fatigue, impairment and physical activity. Psychological Medicine 2001;31:107-114.