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Policy and strategy

Policy and strategy

There is no question that in the past there has not been enough research into M.E., created by a lack of recognition of the illness, a lack of interest from eminent scientists and a lack of funding. Many studies do not include people who have the most severe form of M.E. and we must continue to advocate for a stronger focus on severe M.E. Studies undertaken often feature small numbers and there has been a lack of biomedical focus. However, this is beginning to change with strong collaborations developing such as the UK CFS/M.E. Research Collaborative, of which Action for M.E. is a founding member.

Action for M.E. does not have the large-scale funding required to find a cure for M.E. What we do have is the vision and determination to drive collaborations to stimulate interest and investment which will eventually lead to change.

Our objectives are to:

  • invest in research
  • raise more money to provide more services
  • work with others to create a social movement for change.

Our five year strategy for change

Our 2016-2021 strategy sets out how we will invest in change to bring more people, more money and more research into the M.E. field.

We will play a leading role in driving new collaborations to increase interest and investment in research.

  • We will continue to work closely with the UK CFS/M.E. Research Collaborative.
  • We will play a proactive role with the M.E./CFS Epidemiology and Genomics Alliance to secure funding for a big data research study. We will also ensure effective engagement from those with M.E. and their carers to improve research quality and to ensure this project is a genuine partnership between researchers, people with M.E. and carers.

We will invest in pilot research projects and bring new researchers to the field.

  • We will invest in at least one three-year postdoctoral or PhD studentship at any one time for projects focused on biomedical M.E. research.
  • We will support talented researchers to build an independent research career and increase the skills and expertise in the field of biomedical M.E. research through our new Clare Francis Fellowship.

We will undertake consultations to provide evidence of the impact of the illness on the lives of people with M.E. to use in our influencing work.

  • We will establish an up-to-date picture of funding and specialist healthcare provision for people with M.E. in 2016–2017.
  • We will undertake a five-year update consultation in 2018–2019 on the impact of the illness on health, welfare, education, employment and training.

We will continue to strengthen our financial position and achieve the levels of income and efficiency we need to deliver the promises we make to people affected by M.E.

  • We will ensure that our organisation is as efficient and responsive as it can be.
  • We will raise £3 to £5 for every pound we spend on fundraising.