Action for ME

Action for ME, or AfME, is a patient charity and is 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 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

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.

Management guide

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

Notable People

• Sonya Chowdhury (Chief Executive)
• Julia Newton (Joint Medical Advisor)
• Gregor Purdie (Joint Medical Advisor)

• David Puttnam
• Clare Francis (President)

History

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

Controversy and conflicts of interest

Action For ME continue to fund the research of Esther Crawley

AFME continue to fund the research of Peter White

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. .

Action For ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and charities . 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 . 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 .

Involvement in PACE trial

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. 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."

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

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 recognises its own trustees as members.

Trustees

https://www.actionforme.org.uk/about-us/board-of-trustees/

YouTube Channel Videos

• May 12, 2016, What is ME? with Prof Julia Newton and Dr Gregor Purdie
• May 11, 2016, M.E. and social care
• May 09, 2016, Don't Ignore M.E.

Online Presence

• Website
• Twitter
• Facebook
• YouTube

Charities Commission and Financial Details

1036419 - ACTION FOR ME

Learn more

• Wikipedia - Action for ME

See also

• UK CFS/ME Collaborative

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.

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.

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.

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.

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.

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