Dr Shepherd's letter to BMJ

Here is an interesting post made by Dr Charles Shepherd in the ME Association's Blog:

The ME Association has written to the Editor the British Medical Journal following publication on April 29 of a clinical review on fatigue and somatic symptoms by Dr Russell Viner (Physician in Adolescent Medicine, Middlesex Hospital) and Dr Deborah Christie (Clinical Psychologist, Great Ormond Street Children's Hospital).

We hope the letter outlining our concerns will be published in the print edition of the BMJ in due course.

The text of our letter follows:

The ME Association has three important criticisms of the review of fatigue and somatic symptoms in adolescents by Viner and Christie. (1)

First is their failure to clearly differentiate between the fatigue that occurs in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) from that which occurs in many other conditions. The fatigue of ME/CFS is exercise-induced, affects both physical and mental functioning, and is accompanied by a highly characteristic post-exertional malaise whereby relatively small amounts of activity on one day can result in a significant exacerbation in all ME/CFS symptoms some time later. The fatigue is profound and disabling.

Second is the seriously flawed conclusion that the illness is principally perpetuated by '..physical deconditioning, sleep disturbance and psychosocial factors'. The simple fact is that nobody yet knows the underlying cause/s of ME/CFS, and while psychological and social factors may play a role – as in any chronic medical condition – there is compelling evidence of abnormalities in brain, muscle, endocrine and immune system function. (2) These findings cannot simply be explained by a psychosomatic model. Neither is it consistent with published evidence to conclude that deconditioning is a significant perpetuating factor. (3)

Third is the way in which the positive results from clinical trials involving controversial approaches to management such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET) have not been balanced by negative evidence from patients – as was noted in feedback to the Chief Medical Officer's report. (4) With CBT, only 7% found this approach to be "helpful"; 26% said it made their condition "worse"; and 67% reported "no change". With GET, 35% found it "helpful"; 50% said it made their condition "worse"; and 15% reported "no change". Not surprisingly, doctors have recently been reminded by their insurance organisations that prescriptions for exercise must be given with exactly the same care as drugs - something we believe is not happening in practice.

The ME Association strongly endorses the view of Viner and Christie that the diagnosis should be considered and confirmed as early as possible. In the case of children and adolescents this can often be done within a three month period from onset of symptoms- there is no need to wait for six months as stipulated in international research criteria. (5) Again, this is not happening in practice. And evidence recently collected for the ME Alliance report into early diagnosis (6) found that while 29% of children and adolescents waited for between six months and a year for the diagnosis to be confirmed, 45% waited for more than a year - a situation which is clearly unacceptable.

Dr Charles Shepherd

Medical Adviser
The ME Association
4 Top Angel
Buckingham
MK 18 1TH

References

1 Viner R and Christie D. ABC of adolescence: Fatigue and somatic symptoms. British Medical Journal 2005; 330: 1012 - 1015. (30 April 2005)
2 Shepherd C and Chaudhuri A. ME/CFS/PVFS - An exploration of the key clinical issues. ME Association 2005. (available on-line at http://www.meassociation.org.uk
3 Bazelmans E et al. 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 2001; 31: 107 - 114.
4 CFS/ME Working Group. Report of the CFS/ME working group: report to the chief medical officer of an independent working group. 2002. (available on-line at: http://www.doh.gov.uk - search under CFS/ME)
5 Fukuda K et al. The chronic fatigue syndrome. A comprehensive approach to its definition and study. Annals of Internal Medicine 1994; 121: 953 - 959.
6 ME Diagnosis: Delay Harms Health. ME Alliance 2005. (available on-line at: http://www.meassociation.org.uk/fwhats_new.htm )


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