XMRV and ME/CFS: The MEA writes to the Chief Medical Officer

October 27, 2009

The ME Association has today written to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, about various issues relating to XMRV research and ME/CFS.

Dear Sir Liam
Implications of research findings concerning XMRV and ME/CFS
 I assume you are aware of the new research findings from America, published in Scienceon 8 October 2009,which relate to the retrovirus known as XMRV (xenotropic murine leukaemia virus) and ME/CFS.
The ME Association has produced some information which summarises the research findings and the practical implications they may have in relation to disease management.  Our position statement acknowledges that many uncertainties remain and that further research studies are needed before anyone can conclude that this virus plays a significant role in either the cause, assessment or management of ME/CFS.  We are in contact with several research groups (UK and overseas) who have experience in retroviral research and it is encouraging to note that there is a strong desire in the research community to take this forward as a matter of urgency.  I can supply further information if necessary.  The ME Association summary, which also contains a link to the XMRV research paper, can be found on our website.
I would also like to draw your attention to two statements that have been issued by the National Cancer Institute in America in relation to XMRV. The first statement, which refers to the research findings, can be found here. The second statement, which refers to transmission and blood donation, can be found here.  The NCI interim guidelines relating to blood donation in the second statement (>> point 2) are very similar to those contained in the MEA summary, and the issue of XMRV transmission is something that obviously needs to be brought to the attention of the National Blood Service and Health Protection Agency if not already done so.  A clear statement from the National Blood Service in relation to blood donation from people with ME/CFS would obviously be very helpful to people at this time.
If the Department of Health, or the National Blood Service, would like to add anything to the MEA information, which is being updated at regular intervals, we would be happy to include it.
 Yours sincerely
 Dr Charles Shepherd
Honorary Medical Adviser, The ME Association
7 Apollo Office Court
Radclive Road
Bucks MK18 4DF
Formerly a member of the CMO Working Group on ME/CFS
Dr Des Turner MP – Chair of the All Party Parliamentary Group on ME
Countess of Mar – Chair of Forward ME Group
Dr Jonathan Stoye – National Institute for Medical Research
Professor Stephen Holgate – Chair of MRC Expert Group on ME/CFS Research
Professor Tony Pinching – Peninsular Medical School
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