Journal of IiME Volume 1 Issue 1 MRC Strategy for Research on CFS/ME (continued) treatment is popular with many patients but has not been scientifically evaluated before. With the help of Action for ME, APT has been adapted to enable the researchers to test it rigorously within the trial. The FINE trial will also test three different treatments. They are delivered to patients at home by specially trained nurses, so are particularly suitable for patients who are too ill to attend a specialist clinic. Conclusions The MRC recognises the scale of suffering caused by the spectrum of disorders characterised by fatigue and wants to use public funds sensibly and productively to help CFS/ME patients. We maintain our highlight notice as an indication of the priority that we attach to this area, and we shall support research on any aspect of CFS/ME that is of high quality and is likely to lead to real advancement of knowledge. Colin Blakemore Chief Executive, Medical Research Council April 2007 Annex 1 MRC CFS/ME Research Advisory Group & Terms of Reference Chair : • Nancy Rothwell, University of Manchester • Jacqueline Apperley, MRC Consumer Liaison Group • Philip Cowen, University of Oxford • • Janet Darbyshire, MRC Clinical Trials Unit Diana Elbourne. London School of Hygiene and Tropical Medicine / Institute of Education • Sue Haslehurst, MRC Consumer Liaison Group • Alan McGregor, Guy’s, King’s and St Thomas's • Jon Nicholl, University of Sheffield • • Jackie Oldham, University of Manchester Chris Verity, Addenbrooke's Hospital • Jonathan Weber , Imperial College School of Medicine • Til Wykes, Institute of Psychiatry Invest in ME Charity Nr 1114035 www.investinme.org Note: All members of the MRC CFS/ME Research Advisory Group acknowledge that inevitably in their professional or personal life they may have indirect connections with individuals who may have undertaken research in this area, or who either themselves or a family member may have or have had CFS/ME. The Group agreed there to be no conflict of interest in such cases. Observers / Secretariat • Susan Lonsdale, Department of Health • 23 Chris Watkins, Medical Research Council • Elizabeth Mitchell, Medical Research Council The Terms of Reference for the MRC CFS/ME Research Advisory Group • To consider the Report of the CMO’s Independent Working Group on CFS/ME, including its recommendations for research, • To consider other recent reviews of current knowledge and understanding of CFS/ME, • To take account of patient and lay perspectives, • To recommend to MRC a research strategy to advance understanding of the aetiology, epidemiology and biology of CFS/ME and, • In the light of current knowledge suggest what areas of further research are needed with regard to possible prevention, management (including diagnosis) and treatment. The MRC CFS/ME Research Advisory Group agreed not to revisit the areas considered by the CMO’s Independent Working Group, but to recommend how research might be undertaken that would improve understanding and treatment of CFS/ME. It was agreed that it was beyond the remit of the Research Advisory Group to decide how the recommendations for a research strategy should be implemented, since this would be the responsibility of funders and sponsors. (continued on page 24)
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