Action for ME: Difference between revisions

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m (→‎Controversy and conflicts of interest: -- added most recent letter / response to patients regarding Crawley's presentation. The letter does not refer to the presentation, but discusses how weighing in on CBT and GET is useless.)
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AFME continue to  fund the research of [[Esther Crawley]].
AFME continue to  fund the research of [[Esther Crawley]].
https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-severe-paediatric-me-surveillance-study-youre-funding-about/


AFME continue to fund the research of [[Peter White]]
AFME continue to fund the research of [[Peter White]]
https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-neurophysiology-of-pain-in-me-study-about/


AFME recently published [https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/ this response] to patient concerns regarding the use of CBT and GET for patients after a talk Crawley presented at a renal conference that maligned patients and accused [[David Tuller]] of libel.
AFME recently published [https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/ this response] to patient concerns regarding the use of CBT and GET for patients after a talk Crawley presented at a renal conference that maligned patients and accused [[David Tuller]] of libel.

Revision as of 17:00, May 16, 2017

Action for ME Logo.png

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 | edit source]

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 | edit source]

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 | edit source]

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 | edit source]

History[edit | edit source]

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]

Controversy and conflicts of interest[edit | edit source]

AFME continue to fund the research of Esther Crawley. https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-severe-paediatric-me-surveillance-study-youre-funding-about/

AFME continue to fund the research of Peter White https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-neurophysiology-of-pain-in-me-study-about/

AFME recently published this response to patient concerns regarding the use of CBT and GET for patients after a talk Crawley presented at a renal conference that maligned patients and accused David Tuller of libel.

Involvement in PACE trial[edit | edit source]

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[10]. 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."[11]
  • "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."[14]
  • "The major innovations in this application include close collaboration with Action for ME."[15]

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data. [16]

YouTube Channel Videos[edit | edit source]

Online Presence[edit | edit source]

Charities Commission and Financial Details[edit | edit source]

1036419 - ACTION FOR ME

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]