Action for ME

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Action for ME log

Action for ME, or AfME, is a patient charity 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 fulfill 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.

History[edit | edit source]

The charity was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue, which resulted in complaints. It then changed its name in 1993 to Action for ME.

Its previous Chief Executives were Chris Clark (to 2006) and Sir Peter Spencer (2006-2012). Sonya Chowdhury took over as Chief Executive of Action for M.E. in September 2012.[5]

In April 2017 it merged with Association of Young People with ME.

AfME for years provided the joint secretariat for the All Party Parliamentary Group on ME in the UK Westminster Parliament but that role has now been taken over by The ME association as Action for ME focus their time on their involvement with DecodeME & the Priority setting partnership | last4

Notable people[edit | edit source]

Funding[edit | edit source]

Action for M.E. has received UK government Department of Health (DoH)funding. It also receivesfundingfrom the Scottish Government. AFME now claims it receives no government funding. It states itsupport also comes from public and corporate donations.[6]

AfME has not been transparent about its funding. It has resulted in questions even being asked in Parliament about some of its funding from the UK government. The Countess of Mar asked:

“How much funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to the United Kingdom charity Action for ME since April 2003; for what purpose the award was made; and what were the terms under which it was made; and Whether any funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to any charities representing those with myalgic encephalomyelitis or chronic fatigue syndrome other than Action for ME since April 2003; if so, how much was awarded; to which charities; and for which purpose.”

Lord Warner (Health) responded “In February 2003, Action for Myalgic Encephalomyelitis (ME) was awarded a grant of £187,000 over a three-year period to support its chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical network project. The project is intended to help all those in the field to access knowledge and share best practice on meeting the needs of patients. The Association for Youth with ME was awarded a grant in 2002 of £110,000 over a three-year period in respect of its positive living project. This involves developing a training and information programme to empower children and young people via skills workshops to voice their experience, knowledge and needs of living with CFS/ME. All voluntary organisations awarded Section 64 grants provide regular progress reports showing how they meet the objectives laid down by the grant conditions.”[7]

This funding was provided around the time that the biopsychosocial model of ME/CFS became the dominant approach in the UK, with PACE trial funding being secured around that time. AfME later merged with AFYME.

Controversy and conflicts of interest[edit | edit source]

Change of charity name[edit | edit source]

In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission, as "chronic fatigue" is a symptom distinct from ME and CFS, and the charity subsequently dropped Chronic Fatigue.[8]

Criticism from some ME advocates and charities[edit | edit source]

Some ME advocates have stated that there are many reasons to not support AfME, including an article detailing numerous reasons not to support AfME.[8] Some other ME charities have refused to work with AfME.[citation needed]

In a 2004 House of Lords debate, Action for ME's involvement with Professor Simon Wessely was criticised as it was supporting the Wessely school's CBT/GET management programme and was actively involved in the development of the new CBT/GET treatment centres.[9]

In 2013 AfME relaunched its research strategy with ‘Action for M.E. – Placing Patient Views at the Heart of a New Research Strategy’. Its Chief Executive answered questions about the new strategy and also about the commitment to greater patient involvement on the forum Phoenix Rising.[10] There were many questions left unanswered about the PACE trial, including some by the late Robert Courtney(RIP, Deceased 2018).

Research funding controversies[edit | edit source]

Action for ME had previously announced research funding for Esther Crawley[11] until alternative funding from elsewhere replaced AfME funding.[12]

AfME continued to fund the research of Peter White, principal investigator in the PACE trial.[13]

AfME had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions. AfME's former chairman, Alan Cook, was previously 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 Provident report of 2002.[14]

Patient advocacy[edit | edit source]

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.[15][16] Action for ME Chief Executive at the time, Chris Clark, had been involved in drawing up the 2007 NICE guidelines, and had accepted considerable input from Simon Wessely about the research findings for ME/CFS treatments.

Action for ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and over 50 ME charities.[17] Numerous patients requested and appealled to AfME to sign an open letter to the journal Psychological Medicine in March of 2017 but after a two-month delay they issued their statement in May 2017, stating that they would not be calling for a retraction.[18] AfME published its response to patient concerns regarding the use of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) and the PACE trial for patients and their failure to sign to the open letter to Psychological Medicine.[19]

Despite repeated requests, AfME did not make a statement about a talk that Esther Crawley, who is closely associated with the charity and receives funding from AfME, presented at a renal conference that allegedly maligned patients and involved Professor Crawley accusing David Tuller of libelling her, a photo of a presentation slide with Prof. Crawley stood by it was then posted on Twitter.[18][20][21] Action for ME did say: "Action for M.E. had no input into this presentation and none of our team were present at the talk, so we cannot comment on its content".[18]

#millionsmissing campaign[edit | edit source]

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.[22]

Funding research by Esther Crawley[edit | edit source]

AfME obtained money from a private corporate donor and announced that this anonymous corporate donation would fund the work of the researcher Esther Crawley and her Severe Pediatric Study via the charity.[23] This was questioned and criticized by ME sufferers in forums but AfME removed many posts as they claimed they were defamatory for asking such questions and stated the donation was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering."[24] In 2018, AfME announced that it would not be funding that research, but did not provide a full explanation of the sources of the money and the reasons for doing so.[25] AfME stated the donation would be used directly to support children instead, and that this had been agreed with the donor.

AfME have created and organised the "M.E./CFS International Alliance", a group involving M.E. advocates and charity representatives from six countries. However some organisations stated they weren't aware of their membership and ME patients have expressed concerns due to its history.[26] AfME have been protesting at the World Health Organization (WHO) in Geneva, Switzerland, under the Millions Missing campaign however patients have expressed concerns due to the WHO accepting ME as a neurological disease since 1969.[27]

Criticism from other patient advocacy groups[edit | edit source]

Jane Bryant compiled an extensive dossier of concerns about Action for ME, prior to quitting myalgic encephalomyelitis advocacy.[28]

Involvement in PACE trial controversy[edit | edit source]

AfME were involved from the beginning by supporting the PACE trial and its researchers from 2003. Archives are available of their involvement as their website pages of this involvement | last4have been deleted.[29] The PACE trial would not have been funded or conducted without patient support, which AFME provided.[citation needed]

  • "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."[30]
  • "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."[33]
  • "The major innovations in this application include close collaboration with Action for ME."[34]

Action for ME provided the requisite 'patient support' regularly cited by the PACE trial authors and collaborators since its inception in 2005 and had refused tosupport many patients exposing the flaws in the trial for years or criticise the flaws in the trial. It had ignored these flaws for years despite ME sufferers pointing these out and working for years to expose the trial. AfME'spublic positions on the trial began shifting after patients and other scientists had finally discredited the trial.[citation needed]

Dr David Tuller publicly suggested in a forum on June 18, 2018, that he would also write about AfME when he has time and is able to and stated AfME have made no apology for enabling and abetting PACE and that AfME really should take responsibility for that at this stage.[35] AfME then asked to sign Dr Tuller's letter on June 20th of 2018. This apparent change of position was the day before Carol Monaghan MP's second parliamentary debate.

On August 21, 2018, The Times newspaper ran an article about an open letter to the Lancet which more than a hundred academics, ten MPs, and patient groups from around the world had signed. On August 29, 2018, Action for ME posted a statement on their new position on the PACE trial and behavioral treatments for M.E.[36][37][38]

PACE trial apology[edit | edit source]

In August 2018, a considerable time after the publication of the full PACE trial data and months after the publication of the reanalysis of the data, Action for ME's CEO published an apology for their role in the PACE trial and their "de facto" endorsement of graded exercise therapy and cognitive behavioral therapy. The apology has since been removed from the website.[37]

Action for ME and the PACE Trial

By having a role on the Steering Committee and Management Group, there was a de facto endorsement of the use of £5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research.

I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.

Sonya Chowdhury, Action for ME Chief Executive, Aug 2018[37]

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.[citation needed]It only recognizes its own trustees as members. Action for ME states that Supporting and Lifelong members can vote on "a selection of new and returning trustees."[39]

Trustees[40][edit | edit source]

  • Philip Marsden, Action for ME Treasurer, is a chartered accountant, a director of a corporate finance advisory company and a non-executive director of two investment trusts. Philip's son was diagnosed with ME in 2003.
  • Chris Cundy who is serving his third term as trustee. Chris is a chartered accountant and company director.
  • Jane Young, a consultant radiologist. Jane and her son have both recovered from ME
  • Jane Logan, who has been diagnosed with ME, is a senior lecturer in midwifery.
  • Jane Stacey, who had a career in social work before becoming Deputy Chief Executive at Barnardo's.
  • Sue Hardy, who has had ME for more than 16 years. She worked as a nurse and senior lecturer until she suffered a relapse and took medical retirement.
  • Gordon Berry, who was diagnosed with ME after 25 years of illness. He now runs a business troubleshooting consultancy, and has held charitable roles as a Trustee and Chair.
  • Matt Symonds who first became aware of Action for ME when attending the Speaker's House reception at the UK parliament in 2016.
  • Andy Dougan, a senior marketing and advertising executive, who witnessed a close friend struggle with ME in childhood.
  • Ed Stephens, Head of Global Brokerage and Partnerships at Angel Investment Network, which matches investors to entrepreneurs.
  • Alison Deeth, who was diagnosed with ME in 2005. She is a former solicitor.

Charity activities[edit | edit source]

Focusing about 50% of their resources on providing “support” , Action for ME have come under scrutiny over what they are doing to bring about change as the name “Action for ME” suggests it would:

  • in 2014 they led a survey called Time to Deliver[41] which surveyed the symptoms and their impact, and health and social care experiences of people with ME.
  • 2015 AFME published an interim report on social care provision for people with ME headed [Close to collapse]
  • Following visits by Sonya Chowdhury to Geneva to attend WHO meetings, Action for ME led the setting up in 2018 of the group IAFME, [42] their stated aim to “encourage a coordinated and appropriate public health response to M.E. from the World Health Organization (WHO) and its Member States“.

Online presence[edit | edit source]

Charities commission and financial details[edit | edit source]

1036419 - ACTION FOR ME

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. Action for ME. "Home". Action for ME. Retrieved August 19, 2019.
  2. Action for ME. "Our strategic touchstones". Action for ME. Retrieved August 19, 2019.
  3. "Action for M.E.: Statement of Strategic Intent 2013–2016" (PDF). Action for M.E. Retrieved November 14, 2019.
  4. Action for ME. "What we do". Action for ME. Retrieved March 9, 2021.
  5. Action for ME. "Our staff team". Action for ME. Retrieved March 9, 2021.
  6. Action for ME. "Donate". Action for ME. Retrieved March 9, 2021.
  7. "Lords Hansard text for 11 Feb 2004 (240211w03)". Retrieved August 31, 2019.
  8. 8.0 8.1 "16 Good Reasons to be very suspicious of Action for ME". Stonebird. Retrieved August 19, 2019.
  9. "Myalgic Encephalomyelitis - Hansard". Retrieved August 31, 2019.
  10. "Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy". Phoenix Rising ME / CFS Forums. Retrieved August 31, 2019.
  11. Action for ME. "Questions and answers". Action for ME. Retrieved August 31, 2019.
  12. Action for ME. "Paediatric M. E. research study: alternative funding". Action for ME. Retrieved August 31, 2019.
  13. Action for ME. "What is the neurophysiology of pain in ME study about?". Action for ME. Retrieved August 31, 2019.
  14. "UnumProvident - CMOReport2002". October 9, 2006. Retrieved August 19, 2019.
  15. "ME Association fully supports legal challenge to the NICE Guideline on ME/CFS". February 6, 2009.
  16. meagenda (August 1, 2009). "Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME". ME agenda. Retrieved August 31, 2019.
  17. Racaniello, Vincent; Tuller, David (March 23, 2017). "An open letter to Psychological Medicine, again!". Virology blog. Retrieved August 31, 2019.
  18. 18.0 18.1 18.2 Tuller, David (May 22, 2017). "Trial By Error, Continued: ME Research UK Drops Out of CMRC". Virology blog.
  19. Action for ME (May 16, 2017). "Our Board of Trustees on CBT, GET and PACE". Action for ME. Retrieved August 31, 2019.
  20. Racaniello, Vincent; Tuller, David (June 1, 2017). "Dave Tuller's fundraiser". Virology blog. Retrieved November 12, 2021.
  21. Keith Geraghty [@@keithgeraghty] (April 28, 2017). "@davidtuller1 blog listed under fake anti science slide - disgraceful" (Tweet) – via Twitter.
  22. Chowdhury, Sonya (May 12, 2017). "Thanks so much @EmilyBeardall1 for promoting me. Can't believe 100 days has passed and we have done it! #millionsmissing". @SonyaChowdhury. Retrieved August 31, 2019.
  23. Action for ME. "Questions and answers". Action for ME. Retrieved August 19, 2019.
  24. "Esther Crawley Paediatric Prevalence Study Funded by Action for ME". Action for ME. 2017. Archived from the original on May 15, 2016.
  25. "Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study". Action for ME. January 11, 2018. Archived from the original on January 11, 2018. Retrieved August 31, 2019.
  26. "New Org!: ME/CFS International Alliance". Phoenix Rising ME / CFS Forums. Retrieved August 31, 2019.
  27. World Health Organization (1969). International Classification of Diseases (PDF). 2 (Eighth revision ed.). Geneva: WHO. p. 173. Encephalomyelitis (chronic),
    (myalgic, benign) 323
  29. "Action for M.E. News - PACE Research Study Q&A". August 4, 2003. Retrieved August 31, 2019.
  30. Tuller, David (October 21, 2015). "TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study". Virology blog. Retrieved August 31, 2019.
  31. Pace Trial - Centre for Psychiatry - QMUL
  32. "PACE study results – Medical Research Council (UK) news report, 18 February 2011". Retrieved August 31, 2019.
  33. "Analysis of PACE Trial Results". Retrieved August 31, 2019.
  34. Comment on the statement by Sir Peter Spencer of Action for ME Margaret Williams - 19th April 2011
  35. "Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"". Science for ME. June 18, 2018. Retrieved August 19, 2019.
  36. Whipple, Tom (August 21, 2018). "Call for review of 'flawed' ME research in Lancet letter". The Times. ISSN 0140-0460. Retrieved August 29, 2018.
  37. 37.0 37.1 37.2 "PACE Trial and Behavioural Treatments for ME". Action for ME. August 2018. Archived from the original on August 29, 2018.
  38. Action for ME. "What was the PACE trial?". Action for ME. Retrieved August 30, 2019.
  39. Action for ME (June 28, 2018). "Correcting some inaccuracies about us and our work". Action for ME. Retrieved February 16, 2019.
  40. Action for ME. "Board of Trustees". Retrieved February 16, 2019.
  41. "Initial findings of Action for M.E.'s 2014 survey" (PDF). May 2014.
  42. Action for ME. "International Alliance". Action for ME. Retrieved August 14, 2021.