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 | 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]

Action for M.E. has received UK Department of Health (DoH) funding. It also receives funding from the Scottish Government. AFME now claims it receives no government funding. It states it support also 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]

Webinar for GPs series[edit | edit source]

Expert information and support aimed at General Practitioners, pharmacists, dentists, community nurses, occupational therapists, physiotherapists, nurses and midwives:

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]

In 2016, Action for ME sent a letter to the NIH, protesting the decision by the NIH to host a lecture by Edward Shorter on the history of ME. This letter was sent on behalf of the "M.E./CFS International Alliance", a group involving M.E. advocates and charity representatives from six countries.[10] A thread on the Phoenix Rising forum lists those originally named as belonging to this Alliance as;

  • Sonya Chowdhury, CEO, Action for M.E., UK;
  • Carol Head, CEO, Solve CFS, USA; Jen Brea, #MEAction, USA;
  • David Mann, President, FM-CFS, Canada;
  • Sally Missing, President, Emerge, Australia;
  • Christina Montane, Board Member, Platforma de Familiar FM-SFC ACAF, Spain;
  • David Cifre, Coordinator, Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain.

The same thread then details how both Solve and #MEAction weren't aware of their membership.[11] The response from the NIH to this letter stated "In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward."[12]

In 2018, announced the launch of their international advocacy efforts. They have engaged the Union for International Cancer Control (UICC) to work in Geneva at the World Health Organisation.[13]

They also announced the establishment of the International Alliance for M.E, described as "an informal collaborative group" with "representation from the US, Australia, Spain, Pakistan, South Africa, Japan and the UK.". The specific members of this group weren't named.[14]

Controversy and conflicts of interest[edit | edit source]

Action For ME had previously funded the research of Esther Crawley [15] until alternative funding from elsewhere replaced theirs.[16]

AFME continue to fund the research of Peter White [17]

AFME have had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions. AFME's chairman, Alan Cook, was a chairman of an insurance company.

Michael Sharpe has said "one of the major patient charities (Action for ME) is aligning itself with a more evidence-based approach" in the Unum report of 2002. [18].

AFME also supported the controversial CFS/ME NICE guidelines in 2007 which were opposed by all other patient groups and charities and did not support the judicial review against them [19] [20].

Action For ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and charities [21]. Numerous patients requested and pursued AFME to sign an open letter to Psychological Medicine in March but after two month delay they issued their statement in May. AFME recently published its response patient concerns regarding the use of CBT and GET and the PACE trial for patients and their failure to sign to the open letter to Psychological Medicine [22] . All major charities from around the world signed with the notable exception of AFME.

Despite repeated requests AFME have still not made a statement about a talk that Esther Crawley, who is a medical advisor and receives funding from AFME, presented at a renal conference that maligned patients and accused David Tuller of libel.

AFME did not support or promote the Millions Missing campaign in 2017 and used alternatives but Sonya Chowdhury used the hashtag #MillionsMissing for fundraising for herself and AFME [23].

AFME have obtained money from private corporate donors and used this anonymous corporate donation to fund the work of the controversial researcher Esther Crawley and her Severe Paediatric Study via the charity [24]. This was questioned and criticised by ME sufferers in forums but AFME removed many posts as they claimed they were defamatory for asking such questions and stated it was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering" [25]. In 2018 it was announced that AFME would be returning the money but did not provide a full explanation of the sources of the money and the reasons for doing so [26].

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[27]. 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."[28]
  • "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."[31]
  • "The major innovations in this application include close collaboration with Action for ME."[32]

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data. [33]

Membership[edit | edit source]

Unlike most charities and many ME charities, AFME does not allow its paying members to become legal members of the charity and therefore have no input into the direction of the charity and voting rights. It only recognises its own trustees as members.

Trustees[edit | edit source]

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]

  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
  16. ​Paediatric M.E. research study: alternative funding
  22. this response
  28. TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study PART TWO: The Origins of the PACE Trial
  29. Pace Trial - Centre for Psychiatry - QMUL
  30. PACE study results – Medical Research Council (UK) news report, 18 February 2011 - ME Association
  31. April 2011: Analysis of PACE Trial results - Association of Young People with ME
  32. Comment on the statement by Sir Peter Spencer of Action for ME Margaret Williams - 19th April 2011
  33. 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