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

XMRV and ME/CFS: The MEA writes to the Chief Medical Officer calling for statement from National Blood Service in relation to blood donation

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From the ME Association, 27 October 2009

A copy of our email to the Chief Medical Officer at the Department of Health, which was sent today, can be read in the news section of the MEA website:

http://www.meassociation.org.uk/content/view/1059/161

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

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 Science on 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 at: www.meassociation.org.uk/content/view/1051/213

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 at: http://www.cancer.gov/newscenter/pressreleases/CFSxmrv  

The second statement, which refers to transmission and blood donation, can be found at: http://www.cfids.org/temp/xmrv-guidelines-nci.asp  

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
Gawcott
Bucks MK18 4DF

Formerly a member of the CMO Working Group on ME/CFS

Copies:

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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