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Policy and strategy

Policy and strategy

Action for M.E. supports high quality, evidence-based research. We remain completely open-minded about the results that emerge from well-conducted, peer-reviewed research, recognising that the fundamental aim of research is to acquire knowledge.

Action for M.E.‘s investment in research includes funding small-scale pilot studies with a view to enabling research teams to develop competitive proposals for funding large scale projects through mainstream investment in medical research.

We do not have the huge resources necessary to become a major source of funding ourselves. However, we do see a niche role for Action for M.E. through investing what limited research funds we have, intelligently, to enhance the overall outcome of the national and international research effort. As a general principle we seek to maximise the involvement of people with M.E. in our research activities. The means of achieving this include participation in focus groups, project steering groups and reference groups.

Find out more in our Q&A section.

Research Panel

Action for M.E. has a minimum of three people with M.E. within its Research Panel which reports to the Board of Trustees and holds delegated responsibility for overseeing our research-related work.

All applications we receive are put through a five-stage funding assessment process, which includes people affected by M.E., who sit on our Voice Committee. This ensures that patients and carers are an inherent part of decision-making about research projects that we do and don’t fund. Along with people with M.E. and carers, the committee also includes clinicians and healthcare practitioners not currently active in research.

All the research we fund is agreed by a contract, setting out the rights and obligations of Action for M.E. and the researchers involved.

Find out more about our Research Panel and Voice Committee in our Q&A section.


Collaboration is one of Action for M.E.’s core values and we will always look to work with others to increase capacity and knowledge. This will involve working with other charities, funders/donors, researchers and with research groups, both nationally and internationally, alongside co-funding research studies.

Action for M.E. is an Executive Board member of the CFS/M.E. Research Collaborative. As such, we adhere to its Charter and work as an active part of the Collaborative to stimulate interest and funding into research.

We also seek to guard the interests of people with M.E. by acting as partner in the strategic direction of major research programmes. We also have a role in guiding and informing research projects by being part of steering groups and patient participation groups.