Reply from the UK Department of Health re ME/CFS = Business as usual


Senior Member
After we got our new government in the UK, I thought I would ask them their plans for tackling ME/CFS as I am sure I read that both the conservatives and libdems had spoken about a need for biological research into ME/CFS. After several replies, over several months, saying they were still considering their position, I finally got a reply to my questions. All messages sent to Andrew Landsley, replies on his/DOH's behalf. I thought I would share the reply with you all...


Our ref: DE00000x-x-x-x-x Dated: 14/09/10

Dear Mr x-x-x-x,

Thank you for your email of 24 August about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply.

I have consulted with policy officials who have confirmed that the guidance on CFS/ME issued by the National Institute for Health and Clinical Excellence in August 2007 remains in force. As you know, these guidelines detail how health professionals should provide health and social care to those living with this condition. There is currently no clear evidence on what causes CFS/ME, and no treatment is available that will lead to a cure. The recent research on XMRV remains unverified, although further research is continuing to try and resolve matters.

You may be aware that, in 2009, American researchers reported a possible association of XMRV with CFS/ME, hypothesising that XMRV could cause CFS/ME or be a co-infection. However, no XMRV was detected in a follow-up study by researchers in the United Kingdom, who concluded, "we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS/ME, at least in the U.K."

Currently, the situation on whether XMRV is associated with CFS/ME is not clear and it is therefore too early to suggest that patients living with CFS/ME should be screened for this virus. The Government is committed to ensuring that NHS services are informed by the latest available clinical evidence and in the best interests of patients. It is also committed to the promotion and conduct of research as a core NHS role.

With regard to future research, the usual practice of the Department's National Institute for Health Research and of the Medical Research Council is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. Both organisations welcome applications for support into any aspect of human health and these are subject to peer review and judged in open competition, with awards being made on the basis of the scientific quality of the proposals submitted.

Future levels of expenditure on research in CFS/ME will be determined by the success of relevant bids for funding.

I am sorry if you find this reply disappointing, but I hope this clarifies the Departments position.
Yours sincerely,

Nick Hostettler
Customer Service Centre
Department of Health


So no change. At least they mentioned the possible XMRV association, yet are clinging to the rushed UK studies' result. I did mention the then leaked NIH study but that fell on deaf ears.

I have replied (again!), and among other things, have said how I think the (failed) policy of not ringfencing money for biomedical research for ME/CFS will surely mean no change in the understanding of this illness and how this will maintain the same number of cases of people with ME/CFS in the UK.

I also mentioned possible bias in the selection of research proposals and also the more fundamental point that if students and professionals are not educated about ME/CFS then why on earth would they consider researching it in the first place. That's a viscious circle that does us no good.