Controversy and conflicts of interest
Action For ME continue to fund the research of
Esther Crawley [10]
AFME continue to fund the research of
Peter White [11]
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.
[12].
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
[13] [14].
Action For ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and charities
[15]. 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
[16] . 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
[17].
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
[18]. 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"
[19]. 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
[20].
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
[21]. 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."[22]
- "From the outset, Action for M.E. and a number of patients were involved in the design of the trial."[25]
- "The major innovations in this application include close collaboration with Action for ME."[26]
In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data.
[27]
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.
