Dr Charles B Shepherd,
Hon Medical Adviser
The ME Association
Severely affected - severely neglected:
Santhouse et al (1) are correct to say that therapeutic defeatism is not the answer to ME/CFS and that suicidal intentions must always be taken seriously. However, they make a number of conclusions and observations that are over-simplistic, premature or inaccurate.
First, the media have, quite rightly, used the tragic case of Lynn Gilderdale to highlight the fact that severe ME/CFS exists and that there is a desperate need for biomedical research into the underlying cause. But the media coverage did not imply that ME/CFS is a 'commonly fatal' condition, and it was premature of the authors to then go on and conclude - without the benefit of robust epidemiological data - that mortality is not increased.
Second, a considerable amount of accumuating patient evidence (2) indicates that a significant proportion of people with ME/CFS find that the two behavioural treatments being recommended - cognitive behaviour therapy (CBT) and graded exercise therapy (GET) - are either ineffective (ie CBT) or harmful (ie GET). And the only research so far to investigate potential risk factors which are involved in the development of severe ME/CFS (3) has concluded that there is no evidence to implicate personality or neurotic traits. It is therefore disingenuous to claim that the use of these two behaviour-based therapies, in a group of patients who cannot normally travel to hospital to access them, is going to produce a 'dramatic recovery'.
Third, having dealt with the families of a number of people with ME/CFS who have committed suicide in recent years, the reasons for doing so are often related to a combination of factors which predominently involve lack of medical care and social support, failure to control key symptoms, and inadequate financial help.. While depression may be a factor in some cases it is not always present.
People with severe ME/CFS require multidisciplinary services in both a domiciliary and accesible 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 ME/CFS patients.
1 Santhouse AM, Hotopf M, David AJ. Chronic fatigue syndrome. BMJ 2010; 340: 738 (13 February)
2 Report of the CFS/ME Working Group. Department of Health; January 2002. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4059506.pdf
3 Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and Medicine 2009; 1: 50 -74.http://biolmedonline.com/Articles/vol1_4_50- 74.pdf
Competing interests: Medical Adviser to an ME/CFS patient support and research funding charity. Member of MRC Expert Group on ME/CFS research.