British Medical Journal focuses on ME/CFS and XMRV – 6 March 2010

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


  Besides having XMRV on the front cover there are seven other items:
 
 1   Editor’s choice:  ‘Let’s proceed with caution’ by Fiona Godlee. 
 
2   Editorial:  ‘Chronic fatigue syndrome and human retrovirus XMRV’ by Simon Wessely and Myra McClure (p489)
 
3   Letter: ‘More than defeatism greets patients with ME’ from Stephanie Munn (p495)
 
4   Letter: ‘Severely affected, severely neglected’  from Charles Shepherd (p495)
 
5   Observations/Medicine and the media:  Science,chronic fatigue syndrome, and ME by Cathie Sudlow (p510)
 
6   Research highlights: Chronic fatigue syndrome and XMRV – reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Sciencepaper in October 2009 (p516)
 
7   Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points on p520)
 
 
Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS.
 
Things are about to change….
 

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.

 

References

 

  • 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.

 

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.