As I understand it, the MRC formed the first committee to look at research into ME/CFS after the critical report to the Chief Medical Officer in 2002, where it was suggested that substantial studies into the diagnostic factors of the illness were urgently needed. No such studies appeared. In 2006, following the more specific criticisms of the Gibson Inquiry, the committee was reformed and renamed, with Stephen Holgate in charge. Still no such studies appeared. In 2010 there was an Early Day Motion signed by 123 MPs, and, under that pressure, the MRC announced that it would fund 5 relatively small biomedical studies: we hoped at least that this would be a start, but in fact it finished there (apart from one small recent follow-up). The committee was renamed and reorganized, becoming the CMRC. So, in reality there has been a committee looking at this for 14 years. In all that time there have been many millions spent on psychosocial studies, but still no funding of large biomedical investigations. After 14 years they need patients to sign up to a bland request for support.
We read Keith's account - are we surprised?
But they are puzzled?
Hi Graham
Please could I add a bit of meat to your bone and make a few corrections
Having been involved in this right from the start - I was a member of the Chief Medical Officer's Working Group in the 1998 - 2002 period and our 2002 CMO WG report triggered the first MRC report on ME/CFS research
This was an extremely poor document which was strongly opposed by the MEA
Along with political pressure relating to the very strong bias at the MRC towards funding poor quality psychiatric research (i.e. approval of the PACE trial), but no sense of urgency re biomedical funding, the MRC finally recognised that their post CMO report wasn't satisfactory and something else needed to be done
I was a regular visitor to the MRC in Regent's Park in W1 at this time….
This new initiative resulted in setting up the multidisciplinary MRC Expert Group on ME/CFS which contained, not surprisingly, a broad spectrum of medical opinion (including myself! and Prof Peter White)
However, I believe the group did manage to achieve a very significant shift in opinion at the MRC towards biomedical research into ME/CFS and our final report highlighted a list of research priorities that were very biomedical
I wanted to keep the Expert Group going but the MRC took the view that we had produced a list of biomedical research priorities and they had produced £1.5 million of ring fenced funding for 5 biomedical research studiies (which was linked to the work we had been doing - not the EDM). These are not small studies - the average cost was £300,000.
Since then the MRC has issued a highlight notice encouraging research applications relating to neuropathology - which links in with the fact that Prof Hugh Perry, a member of the CMRC Board, is chair of the MRC Neurosciences Board
The MRC has also held workshops and other initiatives to try and encourage researchers to submit research grant applications covering ME/CFS - with not a lot of success
And as we heard yet again this week at the MRC, there is still a major problem in getting new researchers into this area of medicine and getting them to submit good quality research grant applications to the MRC
We are no longer in a position where the MRC is turning down biomedical research - it just isn't being submitted in the volume that it should be
Of course, the MRC could do more, and I would like to see repeat of the ring fenced funding
But out in the real world this ain't going to happen at the moment…….
Could I just add that I know Keith and supported his CMRC membership application but I had to declare a conflict of interest when this was being discussed because Keith is doing some work for the MEA
