Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey.

BACKGROUND: The aim of this work was to involve patients in setting future priorities for myalgic encephalomyelitis (M.E.) research. METHODS: A national on-line survey was developed collecting structured and unstructured data. Respondents were asked what they considered Action for M.E.'s first, second and third research priorities to be from a list of 13 pre-defined options. Individuals were also invited to provide any additional free text comments about Action for M.E.'s research priorities in general. A total of 1144 individuals completed the on-line survey. Respondents were asked to indicate if: they had M.E. (n = 822; 90.4 %); were a supporting a member of Action for M.E. (n = 94; 10.3 %); carer for someone with M.E. (n = 66;7.3 %), professional with an interest in M.E. (n = 26;2.9 %); or had a family member or colleague with M.E. (n = 136;15 %). Individuals were able to select more than one category as applicable. RESULTS: The top five research priorities identified by the respondents were: disease processes to achieve a better understanding of the underlying pathology of M.E.; more effective treatments; faster and more accurate diagnosis; clinical course of M.E.; outcomes and prognosis; and severely affected patients. The lower research priorities identified were: sleep; economic research towards identifying the cost of ME for individuals and society; and psychological aspects. Much of the unstructured data provided by respondents emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the underlying pathology of M.E. Three themes were identified in relation to this topic: accurate diagnosis and awareness; risk factors and causes; drug development and curative therapies. CONCLUSIONS: Individuals affected by M.E. have clear views regarding the most important priorities for research investment. These tended to focus on disease processes to achieve a better understanding of the underlying pathology of M.E. and have been used to inform Action for M.E.'s ongoing research strategy.