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Action for ME
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=== 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" />
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