Severely affected, severely neglected

This week's edition of the British Medical Journal is concentrating on ME/CFS and XMRV.

Text of letter by Dr Charles Shepherd, medical adviser to the ME Association

Santhouse and colleagues make several conclusions and observations that are over-simplistic, premature, or inaccurate.1

Firstly, the media did use Lynn Gilderdale’s case to highlight the existence of severe chronic fatigue syndrome (CFS) and the desperate need for biomedical research into the underlying cause. But the coverage did not imply that CFS is a "commonly fatal" condition, and it was premature of the authors to conclude – without epidemiological data – that mortality is not increased.

Secondly, accumulating evidence indicates that the two behavioural treatments offered—cognitive behaviour therapy (CBT) and graded exercise therapy (GET)—can be ineffective (CBT) or harmful (GET).2 The only research to investigate potential risk factors for the development of severe CFS found no evidence to implicate personality or neurotic traits,3 so it is disingenuous to claim that the use of these two treatments in a group of patients who cannot normally travel to hospital to access them is going to produce a "dramatic recovery."

Thirdly, in my experience, people with CFS who commit suicide do so because of a combination of factors mainly involving lack of medical care and social support, failure to control key symptoms, and inadequate financial help, and depression is not always present.

People with severe CFS require multidisciplinary services in both a domiciliary and accessible hospital based setting that matches their complex individual needs. Having strongly criticised the current lack of care that is available, we question whether the NHS trusts the authors work for are in fact putting words into action and supplying domiciliary and in-patient facilities for their severely affected patients with CSF.

Cite this as: BMJ 2010;340:c1181

Charles B Shepherd, honorary medical adviser, ME Association