It's the trustees that have the power, and they're currently looking for new ones, so it would be good to get people who are as well informed as possible in there, even if it might involve some frustrating meetings. https://www.actionforme.org.uk/about-us/working-and-volunteering-for-us/ "As a charity for people with M.E. led by people with M.E., Action for M.E.'s constitution requires that at least half of our Trustees have, or have had, M.E. This means that we currently have a vacancy. Our Board of Trustees holds ultimate accountability for everything the charity does; they determine our mission and vision, engage in strategic planning, formulate policies, ensure adequate financial resources and oversee Action for M.E.’s charitable activities. There are four Board meetings each year and an Annual General Meeting in the autumn. Those whose health prevents them from attending in person can participate by teleconference or Skype on occasion. Most Trustees are also a member of one of the committees that deal with specific aspects of Board business. At present the Board has 12 Trustees, including our Chair. We are particularly keen to hear from people with M.E. who have skills and experience relating to healthcare, NHS management, welfare benefits administration, PR and campaigning and/or charity sector management. All applications will be carefully considered. Please download an application pack for more information, and details of how to apply. The closing date for applications is 9am Friday 25 May 2018."
Just found this on their site: "Colin Batten was appointed a Trustees in 2017, following the merger of Action for M.E. with the Association of Young People with M.E, where he had been on the Board."