Following the appointment of Sir Leszec Borysiewicz as the new Chief Executive at the Medical Research Council (MRC), the MEA wrote to the MRC to ask for a meeting to discuss the scandalous lack of government funded or commissioned research into both the underlying cause of this illness and approaches to management that are not simply behavioural (ie cognitive behaviour therapy/CBT and graded exercise therapy/GET). This correspondence can be found here.
For a variety of reasons it has taken some time to fix a date but a meeting has now taken place on Tuesday 15 July.
Although the Chief Executive was unable to attend, Dr Charles Shepherd (MEA medical adviser) met with Dr Joanna Latimer (MRC Programme Manager for ME/CFS) and Dr Robin Buckle (Programme Manager for Neurosciences and Mental Health Research Board).
Much of the time was spent going over very familiar ground regarding the continuing concerns about the bias towards psychological research, the complete lack of MRC funded biomedical research, and the fact that when biomedical research did take place in the UK it was almost always being funded by one of the ME/CFS research charities, including the MEA.
The MRC representatives were genuinely interested in what the ME Association's Ramsay Research Fund has funded the past – including Professor John Gow's gene expression study (which is continuing in Glasgow with new funding) and Dr Derek Pheby's study into factors involved in the development of severe ME – along with our current plans to set up a tissue and post-mortem bank facility in a UK hospital. They also expressed a willingness to co-operate and work with the ME/CFS research charities in future.
Ther key points to emerge from the discussion:
- There is no realistic chance of the MRC providing ring-fenced money for ME/CFS research.
- There is no realistic chance of the MRC commissioning research – as was recommended in section 6:5 of the Chief Medical Officer's report.
- The MRC was, however, keen to encourage good quality research applications into all aspects of ME/CFS, particularly aetiology/cause, and a highlight notice dating back to March 2003 had been issued to emphasise this point
- The MRC does not receive many applications relating to the investigation of causative factors in ME/CFS – certainly in comparison to other neurological disorders.
- Peer review of research applications relating to ME/CFS is carried out by the Board which is most closely linked to which aspect of the illness – eg epidemiology; immunology – the proposal relates to.
- Funding for clinical trials is increasingly coming from the National Institute for Health Research (NIHR). More info on NIHR
The multi-disciplinary group being formed by Prof Stephen Holgate is still to be completed and they hope to have their first meeting later in the year. This group will then be looking at some of the specific problems relating to ME/CFS research – eg how can we attract good quality researchers and research proposals in this area; what new areas of research need to be explored? – and hopefully coming up with some answers. There might then be a wider research meeting in the New Year. More information on this group.
Dr Latimer has agreed to write a 500 word article on the MRC position on ME/CFS research for the October issue of ME Essential magazine.
Dr Charles Shepherd
Hon Medical Adviser, ME Association