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==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|Chronic Fatigue]].<ref name=":1">{{Cite web | url = http://carersfight.blogspot.com/2010/03/16-good-reasons-to-be-very-suspicious.html | title = 16 Good Reasons to be very suspicious of Action for ME. | website = Stonebird | access-date = 2019-08-19}} </ref> === 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.<ref name=":1" /> 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|Wessely school's]] CBT/GET management programme and was actively involved in the development of the new CBT/GET treatment centres.<ref>{{Cite web | url = https://hansard.parliament.uk/Lords/2004-01-22/debates/255ec089-dcad-453b-82aa-e28b91b5bed9/MyalgicEncephalomyelitis | title = Myalgic Encephalomyelitis - Hansard | website = hansard.parliament.uk | access-date = 2019-08-31}} </ref> 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.<ref>{{Cite web | url = https://forums.phoenixrising.me/threads/action-for-m-e-placing-patient-views-at-the-heart-of-a-new-research-strategy.26865/ | title = Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy | website = Phoenix Rising ME / CFS Forums|language=en-US | access-date = 2019-08-31}} </ref> 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]]<ref>{{Cite web | url = https://www.actionforme.org.uk/resources/questions-and-answers/ | title = Questions and answers | last = Action for ME | first = | author-link = Action for ME | website = Action for ME | access-date = 2019-08-31}}</ref> until alternative funding from elsewhere replaced AfME funding.<ref>{{Cite web | url = https://www.actionforme.org.uk/news/%E2%80%8Bpaediatric-me-research-study-update-new-funding-found/ | title = Paediatric M. E. research study: alternative funding | last = Action for ME | first = | author-link = Action for ME | website = Action for ME | access-date = 2019-08-31 | date = | author-link = |archive-url=|archive-date=}}</ref> AfME continued to fund the research of [[Peter White]], principal investigator in the [[PACE trial]].<ref>{{Cite web | url = https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-neurophysiology-of-pain-in-me-study-about/ | title = What is the neurophysiology of pain in ME study about? | last = Action for ME | first = | author-link = Action for ME | website = Action for ME | access-date = 2019-08-31}} </ref> 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.<ref>{{Cite web | url = http://web.archive.org/web/20061009051749/http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#1 | title = UnumProvident - CMOReport2002 | date = 2006-10-09 | website = web.archive.org | access-date = 2019-08-19}}</ref> === 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.<ref>{{Cite web | url = https://meagenda.wordpress.com/2009/02/06/me-association-fully-supports-legal-challenge-to-the-nice-guideline-on-mecfs/ | title = ME Association fully supports legal challenge to the NICE Guideline on ME/CFS | last = | first = | author-link = | date = Feb 6, 2009 | website = meagenda.wordpress.com|archive-url=|archive-date=|access-date=}}</ref><ref>{{Cite web | url = https://meagenda.wordpress.com/2009/08/01/concerning-a-recent-statement-and-report-published-in-the-wake-of-the-judicial-review-of-the-nice-guidelines-on-cfsme/ | title = Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME | last = meagenda | date = 2009-08-01 | website = ME agenda|language=en | access-date = 2019-08-31}} </ref> 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.<ref name="Tuller20170323">{{Cite web | url = http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ | title = An open letter to Psychological Medicine, again! | last = Racaniello | first = Vincent | last2 = Tuller | first2 = David | author-link = David Tuller | website = [[Virology blog]] | date = March 23, 2017|language=en-US|archive-url=|archive-date= | access-date = 2019-08-31}}</ref> 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.<ref name="AfME-CrawleyTuller">{{Cite web | url = https://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/ | last = Tuller | first = David | author-link = David Tuller|website =[[Virology blog]] | date = May 22, 2017 | title = Trial By Error, Continued: ME Research UK Drops Out of CMRC}}</ref> 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.<ref name="Trustees2019">{{Cite web | url = https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/ | title = Our Board of Trustees on CBT, GET and PACE | last = Action for ME | first = | author-link = Action for ME | website = Action for ME | access-date = 2019-08-31 | date =May 16, 2017 | author-link = |archive-url=|archive-date=}}</ref> 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.<ref name="AfME-CrawleyTuller" /><ref name ="DaveTullerFundraiser2017">{{Cite web | date = 2017-06-01 | url = https://www.virology.ws/2017/06/01/david-tullers-fundraiser/ | last = Racaniello | first = Vincent | last2 = Tuller | first2 = David | author-link2 = David Tuller | title = Dave Tuller's fundraiser | website = [[Virology blog]]|language=en-US|archive-url=|archive-date= | access-date = 2021-11-12}}</ref><ref name="libelousblogs">{{Cite tweet | url = https://twitter.com/keithgeraghty/status/857987810955059200 | last = Geraghty | first = Keith | author-link = Keith Geraghty | date = Apr 28, 2017|user=@keithgeraghty | title = @davidtuller1 blog listed under fake anti science slide - disgraceful}}</ref> 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".<ref name="AfME-CrawleyTuller" /> ===<nowiki>#</nowiki>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.<ref>{{Cite web | url = https://twitter.com/SonyaChowdhury/status/863000514337943552 | title = Thanks so much @EmilyBeardall1 for promoting me. Can't believe 100 days has passed and we have done it! #millionsmissing | last = Chowdhury | first = Sonya | date = 2017-05-12 | website = @SonyaChowdhury|language=en | access-date = 2019-08-31 | author-link = |archive-url=|archive-date=}} </ref> ===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.<ref>{{Cite web | url = https://www.actionforme.org.uk/resources/questions-and-answers/ | title = Questions and answers | last = Action for ME | first = | author-link = Action for ME | website = Action for ME | access-date = 2019-08-19|url-status=dead}}</ref> 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."<ref name="fundingCrawley">{{Cite web | url = https://www.actionforme.org.uk/resources/questions-and-answers/what-is-the-severe-paediatric-me-surveillance-study-youre-funding-about/ | date = 2017 | url-status=dead|archive-url=https://forums.phoenixrising.me/threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/ | title = Esther Crawley Paediatric Prevalence Study Funded by Action for ME | website = Action for ME|language=en|archive-date=2016-05-15}}</ref> 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.<ref>{{Cite web | date = Jan 11, 2018|archive-date=Jan 11, 2018|archive-url=https://www.s4me.info/threads/action-for-me-terminates-by-mutual-agreement-with-the-university-of-bristol-contract-to-fund-crawley-study.1872/ | url = https://www.actionforme.org.uk/news/%E2%80%8Bpaediatric-me-research-study-update-new-funding-found/ | title = Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study | website = Action for ME|language=en | access-date = 2019-08-31}}</ref> 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.<ref>{{Cite web | url = https://forums.phoenixrising.me/threads/new-org-me-cfs-international-alliance.47920/ | title = New Org!: ME/CFS International Alliance | website = Phoenix Rising ME / CFS Forums|language=en-US | access-date = 2019-08-31}}</ref> 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 [[:Category:Neurological diseases and disorders|neurological disease]] since 1969.<ref name=":3">{{Cite book | url = https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y | title = International Classification of Diseases | last = World Health Organization | first = | publisher = WHO| year = 1969|isbn=|editor-link = |edition=Eighth revision | volume = 2|location=Geneva | pages = 173|chapter=|quote=Encephalomyelitis (chronic),<br>(myalgic, benign) 323|editor-last2 = |editor-link2 = }}</ref> ===Criticism from other patient advocacy groups === [[Jane Bryant]] compiled an extensive dossier of concerns about Action for ME, prior to quitting [[myalgic encephalomyelitis]] advocacy.<ref>{{Cite web | url = https://web.archive.org/web/20090815134100/http://www.theoneclickgroup.co.uk/documents/ME-CFS_char/AFME/THE%20AFME%20DOSSIER%202004.doc | title = THE AFME DOSSIER: A DOSSIER OF CONCERNS ABOUT THE CHARITY ACTION for ME (AfME) | last = Bryant | first = Jane | author-link = | date = Aug 2006 | website = THE ONE CLICK GROUP|archive-url=|archive-date=|access-date=}}</ref>
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