September 29, 2016
Research into M.E./CFS represents less than 1% of all active grants given by UK mainstream funding agencies, highlights a new report launched at today's UK CFS/M.E. Research Collaborative conference in Newcastle.
Sonya Chowdhury, Chief Executive, Action for M.E. and lead author of the M.E./CFS Research Funding report, says, “M.E./CFS receives comparatively little funding compared with other neurological disorders. But symptoms are at least as disabling as multiple sclerosis and congestive heart failure, and we know that people with M.E./CFS score lower overall on health-related quality-of-life tests than most other chronic conditions. It is unacceptable that there is so little research investment into a condition that presents so heavy a burden on the lives of people with M.E./CFS, their children and families, and on wider society.”
M.E./CFS has been a high priority for the Medical Research Council (MRC) for a long time, yet it receives very few high-quality applications in this area. Based on this report, and the scientific discussions at the conference, the MRC will review its M.E./CFS highlight notice, the mechanism by which researchers are alerted to areas that are a high priority for the MRC, with a view to encourage more applications.
Dr Neha Issar-Brown, Programme Manager for Population Sciences and Systems Medicine, MRC, says: “The MRC has worked with the research community for a number of years to identify research gaps and priorities for M.E./CFS, and to encourage high quality applications in the identified areas. This report highlights the current gaps in our understanding of the underlying mechanisms involved in this debilitating condition. It also, very clearly, recognises the need to attract multidisciplinary skills and expertise from outside the field. The MRC will therefore continue to work with the UK CFS/M.E. Research Collaborativeby drawing attention to the highlighted area and encouraging more researchers to address them.”
Prof Stephen Holgate, Chair, UK CFS/M.E. Research Collaborative, says: “This report presents hard evidence of the chronic lack of research funding for M.E./CFS from major funding agencies. I am delighted that the MRC will now review its highlight notice as a result, and hope that the report proves to be a foundation for other mainstream funders to reassess their attitudes towards M.E./CFS and review their funding policies towards the illness.”
Setting out the significant scale and impact of M.E./CFS on individuals and society, the report highlights that research funding has been low-level and patchy, and that investment needs to be increased, particularly for high-quality studies of biological mechanisms and treatments. In addition, the skills, expertise and insight of researchers outside the field are required to tackle the gaps in knowledge and understanding about M.E./CFS.
In response, the UK CFS/M.E. Research Collaborative sets out in the report how it will address these issues by increasing investment in research; undertaking a critical analysis of categories of research funding to identify under-researched areas for future investment; and improving the success rate of applications for research funding to mainstream funders.