This week’s edition of the British Medical Journal is concentrating on ME/CFS and XMRV.
There is also an editorial – ‘If accepted, will fan the flames of false positive diagnoses’ – on the first draft of DSM-V (p492)
Text of letter by Dr Charles Shepherd, medical adviser to the ME Association
Severely affected, severely neglected
Santhouse and colleagues make several conclusions and observationsthat are over-simplistic, premature, or inaccurate.1
Firstly, the media did use Lynn Gilderdale’s case to highlightthe existence of severe chronic fatigue syndrome (CFS) and thedesperate 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 – withoutepidemiological data – that mortality is not increased.
Secondly, accumulating evidence indicates that the two behaviouraltreatments offered—cognitive behaviour therapy (CBT) andgraded exercise therapy (GET)—can be ineffective (CBT)or harmful (GET).2 The only research to investigate potentialrisk factors for the development of severe CFS found no evidenceto implicate personality or neurotic traits,3 so it is disingenuousto claim that the use of these two treatments in a group ofpatients who cannot normally travel to hospital to access themis going to produce a “dramatic recovery.”
Thirdly, in my experience, people with CFS who commit suicidedo so because of a combination of factors mainly involving lackof medical care and social support, failure to control key symptoms,and inadequate financial help, and depression is not alwayspresent.
People with severe CFS require multidisciplinary services inboth a domiciliary and accessible hospital based setting thatmatches their complex individual needs. Having strongly criticisedthe current lack of care that is available, we question whetherthe NHS trusts the authors work for are in fact putting wordsinto action and supplying domiciliary and in-patient facilitiesfor their severely affected patients with CSF.
Cite this as: BMJ 2010;340:c1181
Charles B Shepherd, honorary medical adviser1
1 ME Association, Gawcott, Buckinghamshire MK18 4DF
Competing interests: CBS is medical adviser to an ME/CFS patientsupport and research funding charity, and a member of the MRCexpert group on ME/CFS research.
- Santhouse AM, Hotopf M, David AJ. Chronic fatigue syndrome. BMJ 2010;340:c738.(11 February.)
- Department of Health. Report of the CFS/ME Working Group. 2002.
- Pheby D, Saffron L. Risk factors for severe ME/CFS. Biol Med 2009;1:50-74.