Today is five years exactly since first report of the new Medical Research Council strategy on ME/CFS appeared on the BBC. What has happened since then? The ME Association has today written to the new chief executive of the MRC on this issue.
Dear Professor Borysiewicz
Five years ago on this day BBC News reported on the MRC research strategy for ME/CFS. The news item – ‘ME research action plan revealed' – can still be accessed here.
The MRC announcement brought real hope to thousands of people with ME/CFS, along with the expectation that MRC funding would now be directed towards the underlying cause of this illness as well as investigating forms of treatment that are not based on the deeply flawed psychosocial model of causation.
Instead, all that has happened for the past 5 years is the allocation of MRC funding to yet more studies into behavioural treatments (ie the FINE and PACE Trials) that are largely based on the idea that ME/CFS is maintained by abnormal illness beliefs/behaviour and deconditioning.
Not surprisingly, people with ME/CFS feel badly let down and angry – especially when a succession of proposals looking at causation have been turned down by the MRC and promising new research initiatives, such as the studies into gene expression being carried out by Professor John Gow and Dr Jonathan Kerr, are having to be funded by the medical charities, including the ME Association.
We presume you are aware that MPs are now so concerned about the current situation that a House of Commons Adjournment Debate is being sought for the New Year.
We appreciate that you have only recently taken over as Chief Executive at the MRC. Could we therefore ask that you take this opportunity to look again at the way in which current systems are not resulting in research initiatives into causation and non behavioural forms of treatment being funded by the MRC. One very simple and cheap way to start 2008 would be for the MRC to place announcements in the Lancet and other medical journals making it clear that the MRC would very much welcome good quality research proposals in the areas that we refer to. We know from our own experience as a medical charity which funds research that this can be a very effective way of encouraging new research applications.
We would also be grateful if you would agree to meet with ME Association representatives in the New Year to discuss our concerns.
Neil Riley, Chair
Dr Charles Shepherd. Hon Medical Adviser
The ME Association
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