Action for ME

Action for ME, or AfME, is a patient charity 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 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

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.

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

• Sonya Chowdhury (Chief Executive)
• Ruth Richardson (Deputy Chief Executive)
• Dr David Strain (Current Medical Advisor appointed 2021)
• Julia Newton (Former Joint Medical Advisor)
• Gregor Purdie (Former Joint Medical Advisor)
• Dr Alastair Miller (Former medical advisor 2010-2015 (CBT/GET promoter))
• David Puttnam
• Clare Francis (President)

Funding

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.

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.”

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

Change of charity name

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.

Criticism from some ME advocates and charities

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

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.

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. There were many questions left unanswered about the PACE trial, including some by the late Robert Courtney(RIP, Deceased 2018).

Research funding controversies

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

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

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.

Patient advocacy

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. 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. 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. 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.

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. 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".

#millionsmissing campaign

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.

Funding research by Esther Crawley

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. 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." 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. 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. 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.

Criticism from other patient advocacy groups

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

Involvement in PACE trial controversy

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. 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."

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.

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. 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.

PACE trial apology

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.

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

Membership

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 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."

Trustees

• Jonah Grunsell, who has been Chair of Board of Trustees since November 2016. Jonah replaced Alan Cook.

• 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.

• Dr Gregor Purdie, former Clinical Lead for ME for NHS Dumfries and Galloway, now retired, co-authored the Scottish Good Practice Statement on ME/CFS. Dr Purdie is one of Action for ME's Medical Advisers.

• 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.

• Colin Batten was appointed a trustees in 2017, following the merger with the Association of Young People with ME, where he was on the Board.

• 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.

• Phil Murray was diagnosed with ME in 1997, and has been mainly in remission since 2007. Phil has worked extensively with Westcare_UK, sat on the ME patient advisory group for MEGA, attended the NICE guidelines scoping meeting in 2918, and co-organised a Millions Missing protest.

• Alison Deeth, who was diagnosed with ME in 2005. She is a former solicitor.

Charity activities

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 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 https://www.actionforme.org.uk/uploads/pdfs/close-to-collapse-report-UPDATED.pdf]
• Following visits by Sonya Chowdhury to Geneva to attend WHO meetings, Action for ME led the setting up in 2018 of the group IAFME, 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

• Website
• Twitter
• Facebook
• YouTube

Charities commission and financial details

1036419 - ACTION FOR ME

See also

• UK CFS/ME Collaborative

Learn more

• Correcting some inaccuracies and us and our work - Action for ME
• Wikipedia - Action for ME

See myalgic encephalomyelitis.

See Action for ME.

Action for ME (AfME) - Action for ME is a British non-profit organization that 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. It then changed its name in 1993 to Action for ME.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

Action for ME (AfME) - Action for ME is a British non-profit organization that 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. It then changed its name in 1993 to Action for ME.

muscle strain An injury involving a stretched or torn muscle or tendon (tendons are fibrous cords of tissue that connect muscle to bone).

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See ME/CFS.

See chronic fatigue syndrome.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

involving, related to or in the area of the kidneys

renal involving, related to or in the area of the kidneys

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

See World Health Organization.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

See post-exertional malaise.