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.

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


 * November 2017 - Meeting the needs of people with M.E./CFS - essential facts and practical tips by Emily Beardall, MPharm, MRPharmS
 * May 2017 - M.E., POTS and Autonomic Dysfunction by Dr. Julia Newton, and Dr. Lesley Kavi (link unavailable)

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.

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. A thread on the Phoenix Rising forum lists those originally named as belonging to this Alliance as; The same thread then details how both Solve and #MEAction weren't aware of their membership. 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."
 * Sonya Chowdhury, CEO, Action for M.E., UK;
 * Carol Head, CEO, Solve CFS, US; Jen Brea, #MEAction, US;
 * 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.

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.

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.

Controversy and conflicts of interest
Action For ME had previously funded the research of Esther Crawley until alternative funding from elsewhere replaced theirs.

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. .

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 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.

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. 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". 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.

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.

New position on the PACE trial
On August 29, 2018, Action for ME posted a statement on their new position on the PACE trial and behvaioural treatments for M.E."“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.""“Our position on recommending treatment and management approaches for M.E. is set out below and, over the coming months, we will review all our printed and online information to reflect this. This is no small task, but one that the team will prioritise and complete as quickly and comprehensively as we can.""“We will learn from our past mistakes. We will continue to provide practical support to our Supporting Members and others with M.E., to challenge the stigma and neglect they experience, and work with professionals and policy-makers to transform the lives of children, young people and adults with M.E. in the future.”"
 * Aug 29, 2018, The PACE trial and behavioural treatments for M.E.
 * GET: "Action for M.E. does not support any therapeutic approach that assumes M.E./CFS is based on deconditioning."
 * CBT: "Action for M.E. does not support any therapeutic approach in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored."

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