Journal of IiME Volume 1 Issue 1 MRC Strategy for Research on CFS/ME (continued) even for the most common conditions, although in areas of serious unmet clinical need, we do sometimes issue highlight notices, to alert the research community to our strong interest in funding good research. The MRC issued such a highlight notice for CFS/ME and that highlight notice is still in effect. Thus, the MRC continues to encourage research applications in CFS/ME, and our Research Boards have agreed to prioritise this area. However, applications must not fall below the scientific standards set by our rigorous peer review process, through which applications are judged in open competition with other demands on funding. The main factors in our Research Boards’ funding decisions are: • research excellence; • • the likelihood of major advances in knowledge; and the clinical importance of the topic. This is to ensure that the research supported by the MRC will have the best chance of delivering knowledge that will be useful in tackling medical conditions, and that we therefore use taxpayers’ money to good effect. Needless to say, the MRC has a responsibility to encourage the strong UK research community to contribute as widely and effectively as possible to improving the health of the nation. So, the MRC is very keen to support high-quality studies on CFS/ME that stand a good chance of delivering their stated aims. It would obviously not be acceptable to the public as a whole for the MRC to support research applications that are judged, in open competition, to be of lower quality than other proposals that are more likely to yield results of real value to the sufferers of other conditions. Challenges to understanding the causes and biological bases of CFS/ME There are a number of challenges to advancing the understanding of CFS/ME arising from individual variation in the spectrum of signs and symptoms associated with fatigue conditions, and hence uncertainty about the cardinal signs of CFS/ME. A related problem in the design of research is the variability of response of sufferers to potential interventions, possibly because of differences in underlying aetiology and pathology. Invest in ME Charity Nr 1114035 The intensity as well as the nature of the symptoms vary considerable, not only between patients but also over time for individual patients, and at different stages in the progress of the condition. The lack of consistency of data from experiments on people with CFS/ME presents a huge challenge to the interpretation of the results of research. The fact that some, perhaps many patients have one or more other comorbid conditions, particularly mood and anxiety disorders, makes research even more difficult. The complexity of this condition led the Advisory Group to recommend that researchers should develop high-quality research proposals addressing key issues for CFS/ME research that are amenable for study at the present time. It is hoped that improved definition of the phenotypes of potential subgroups that may come under the CFS/ME spectrum, will help to underpin future research on causes and mechanisms. However, the MRC remains committed to funding scientific research into all aspects of CFS/ME at any time and will consider funding research into the biological basis of the condition, provided it meets the quality thresholds set out above. Another challenge for CFS/ME is the lack of researchers with an adequate understanding of the condition and training in the multidisciplinary approaches that might facilitate ground-breaking discoveries. Unfortunately, the openly expressed frustration of many CFS/ME sufferers has led many researchers to feel under attack from the very community that they are trying to help. The frustration, even hostility, expressed against researchers can only discourage the necessary influx of new researchers to take the field forward. Current MRC funding for CFS/ME The MRC is currently funding six research projects on CFS/ME (see Annex 2) – a total investment of more than £3m. For comparison, this is similar to the level of MRC support for research on autism and on skin cancer. The MRC’s portfolio includes two large clinical trials of new approaches to treating CFS/ME – the PACE trial (£2,076,363) and the FINE trial (£824,129). The PACE trial will be comparing three treatments given to patients in a clinical setting, one of which is Adaptive Pacing Therapy (APT). This (continued on page 23) www.investinme.org 22
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