Action for ME



Action for ME, or AfME, is a patient charity and is registered in England and Wales: 1036419 and registered in Scotland: SC040452.

Aims
The 2013 Action for ME Statement of Strategic Intent outlines three strategic touchstones for 2013-2016: Inform and Influence, Empower and Support, Research. Their priorities are: Awareness and understanding, health, welfare, research, employment.

Our vision, mission and values
 * Our vision is a world without M.E.
 * Our mission is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure.
 * Shared values are held with high regard in our organisation and reflect how we seek to work with our supporters, partners and other key stakeholders. They reflect the attitudes, beliefs and behaviour that we value in each other and underpin our whole approach and culture.

Funding
Apart from a small grant in Scotland, Action for M.E. receives no Government funding. Support comes from public and corporate donations.

Management guide
Action for ME publishes a guide for patients to help management the disease, written by patients. It includes Adaptive pacing therapy.

Notable People

 * Sonya Chowdhury (Chief Executive)
 * Julia Newton (Joint Medical Advisor)
 * Gregor Purdie (Joint Medical Advisor)


 * David Puttnam
 * Clare Francis (President)

History
The charity was set up in 1987 as The M.E. Action Campaign, with the name changing in 1993 to Action for ME. . Sonya Chowdhury took over as Chief Executive of Action for M.E. in September 2012.

Controversy and conflicts of interest
AFME have funded the research of Esther Crawley.

Involvement in PACE trial
AFME were involved from the beginning by supporting the PACE trial and its researchers from 2003. AFME do not refer to their involvement with the PACE trial now. However archives are available of their involvement. The PACE trial would not have been funded or conducted without patient support, which AFME provided.


 * "Despite the anger in the patient community, the investigators were able to enlist Action For ME, another major advocacy group, to help design the pacing intervention. They called their operationalization of the strategy “adaptive pacing therapy,” or APT."


 * The Oxford criteria was used for PACE trial participation. The PACE trial was designed with input from the charity, Action for ME.


 * "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."


 * "The major innovations in this application include close collaboration with Action for ME."

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data.

YouTube Channel Videos

 * May 12, 2016, What is ME? with Prof Julia Newton and Dr Gregor Purdie
 * May 11, 2016, M.E. and social care
 * May 09, 2016, Don't Ignore M.E.

Online Presence

 * Website
 * Twitter
 * Facebook
 * YouTube

Charities Commission and Financial Details
1036419 - ACTION FOR ME

Learn more

 * Wikipedia - Action for ME