Action for ME

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Action for ME, or AfME, is a patient charity and is registered in England and Wales: 1036419 and registered in Scotland: SC040452.[1]

Aims[edit]

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.[2][3]

Our vision, mission and values[4]

  • 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[edit]

Apart from a small grant in Scotland, Action for M.E. receives no Government funding. Support comes from public and corporate donations.[5]

Management guide[edit]

Action for ME publishes a guide for patients to help management the disease, written by patients. It includes Adaptive pacing therapy.[6][7]

Notable People[edit]

History[edit]

The charity was set up in 1987 as The M.E. Action Campaign, with the name changing in 1993 to Action for ME.[8]. Sonya Chowdhury took over as Chief Executive of Action for M.E. in September 2012.[9]

Involvement in PACE trial[edit]

  • "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."[10]
  • "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."[13]
  • "The major innovations in this application include close collaboration with Action for ME."[14]

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data. [15]

YouTube Channel Videos[edit]

Online Presence[edit]

Charities Commission and Financial Details[edit]

1036419 - ACTION FOR ME

Learn more[edit]

See also[edit]

References[edit]

  1. Action for ME - Home Page
  2. Action for ME - About
  3. Action for ME Statement of Strategic Intent - 2013-2016
  4. Our vision, mission and values - Action for ME
  5. Action for ME - Make a Difference
  6. Taming the Gorilla
  7. Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy - Adaptive Pacing Therapy - Biomed Central
  8. Action for ME - Wikipedia: Action for ME
  9. Action for ME - About Us - CEO
  10. TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study PART TWO: The Origins of the PACE Trial
  11. Pace Trial - Centre for Psychiatry - QMUL
  12. PACE study results – Medical Research Council (UK) news report, 18 February 2011 - ME Association
  13. April 2011: Analysis of PACE Trial results - Association of Young People with ME
  14. Comment on the statement by Sir Peter Spencer of Action for ME Margaret Williams - 19th April 2011
  15. Our letter in support of PACE trial data release


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history