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List of open letters from patient advocates and advocacy organizations
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== [[PACE trial]] == '''TO:''' Dr. [[Richard Horton]] Editor [[The Lancet]] FROM: [[Invest in ME Research|Invest in ME]] RE: [[PACE trial]] Paper DATE: November 14, 2015<ref>[http://www.investinme.org/Documents/Lancet/Letter%20to%20Editor%20of%20the%20Lancet%20November%202015.pdf TO: Dr Richard Horton Editor The Lancet FROM: Invest In ME RE: PACE Trial Paper DATE: November 14, 2015]</ref> ---- '''TO:''' Daily Telegraph and Other Websites FROM: Dr. Neil Abbot, [[ME Research UK]] RE: [[PACE trial]] Reports DATE: October 28, 2015<ref>[http://www.meresearch.org.uk/news/ballyhoo-over-pace/ TO: Daily Telegraph and Other Websites FROM: ME Research UK RE: PACE Trial Reports DATE: October 28, 2015]</ref> ---- '''TO:''' [[The Lancet]] FROM: Alison Rae, [[Action CIND]] RE: Address Correspondence about [[PACE trial]] DATE: February 13, 2016<ref>[https://www.facebook.com/notes/action-cind/pace-trial-an-open-letter-to-the-lancet/675517282550693 TO: The Lancet FROM: Alison Rae Action CIND RE: Address Correspondence about PACE trial DATE: February 13, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London|QMUL]] FROM: [[25 Percent ME Group]] RE: [[PACE trial]] Data Requests DATE: February 10, 2016<ref>[http://www.25megroup.org/Campaignging/Awareness%202016/Letter%20to%20QUML.dot#quml TO: QMUL FROM: 25 Percent ME Group RE: PACE trial Data Requests DATE: February 10, 2016]</ref> ---- '''TO:''' Dr. [[Richard Horton]] of [[The Lancet]] FROM: Lydia Neilson of [[National ME/FM Action Network]] RE: Release of [[PACE trial]] Data DATE: February 13, 2016<ref>[https://www.facebook.com/MEFMActionNetwork/posts/1118452658174676 TO: Dr. Richard Horton of The Lancet FROM: Lydia Neilson of National ME/FM Action Network SUBJECT: Release of PACE trial Data DATE: February 13, 2016]</ref> ---- '''TO:''' [[Association of Young People with ME]] (AYME) FROM: [[Clark Ellis]] RE: [[PACE trial]] DATE: February 18, 2016<ref>[https://autodidactauthor.wordpress.com/2016/02/18/pace-trials-forbidden-fruits-an-open-letter-to-ayme/ TO: AYME FROM: Clark Ellis SUBJECT: PACE trial DATE: February 18, 2016]</ref> ---- '''TO:''' Records and Information Compliance Manager, [[Queen_Mary_University_of_London |QMUL]] Copies to: Professor Simon Gaskell, Principal, QMUL; [[Richard Horton]], Editor, [[The Lancet]]; Medical Research Council FROM: [[Hope 4 ME & Fibro NI]] RE: Release [[PACE trial]] data from QMUL DATE: February 16, 2016<ref>[https://www.facebook.com/Hope4MEFibro/posts/1006557642736389 TO: Records and Information Compliance Manager, QMUL Copies to: Professor Simon Gaskell, Principal, QMUL; Richard Horton, Editor, The Lancet; Medical Research Council FROM: Hope 4 ME & Fibro NI SUBJECT: Release PACE trial data from QMUL DATE: February 16, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London |QMUL]] FROM: [[Action for ME]] RE: Release [[PACE trial]] Data DATE: February 26, 2016<ref>[https://www.actionforme.org.uk/news/our-letter-in-support-of-pace-trial-data-release/ TO: QMUL FROM: Action for ME Subject: Release PACE trial Data DATE: February 26, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London |QMUL]], Paul Smallcombe, Professor Simon Gaskell; [[The Lancet]] [[Richard Horton]] FROM: [[Groep ME-Den Haag]] RE: Release [[PACE trial]] Data DATE: February 24, 2016<ref>[https://www.facebook.com/GroepMEDenHaag/posts/678816975555397 TO: QMUL, Paul Smallcombe, Professor Simon Gaskell; The Lancet, Richard Horton FROM: Groep ME-DenHaag SUBJECT: Release PACE trial Data DATE: February 24, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London |QMUL]] FROM: [[Irish ME Trust]] RE: Release [[PACE trial]] Data DATE: February 22, 2016<ref>[https://www.dropbox.com/s/1dvs763svrrmjhh/IMET%20QMUL%20Letter%20Feb%202016.pdf?oref=e TO: QMUL FROM: Irish ME Trust SUBJECT: Release PACE trial Data DATE: February 22, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London| QMUL]] FROM: [[ME-gids]] RE: [[PACE trial]] Data DATE: March 7, 2016<ref>[http://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-1518.html TO: QMUL FROM: ME-gids Subject: [[PACE trial]] Data DATE: March 7, 2016]</ref> ---- '''TO:''' [[Queen_Mary_University_of_London| QMUL]] FROM: [[ME/CVS-Stichting Nederland]]; [[ME/CVS Vereniging]]; [[Steungroep ME en Arbeidsongeschiktheid]] RE: [[PACE trial]] Data DATE: March 15, 2016<ref>{{Cite web|url-status=dead | url = http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf | archive-url=http://web.archive.org/web/20160420164059/http://www.me-cvsvereniging.nl/sites/default/files/Brief%20aan%20QMUL%20per%20post%20verstuurd%20d.d.%2015%20mrt%202016.pdf | archive-date=2016-04-20 | last = ME/CVS-Stichting Nederland | authorlink = ME/CVS-Stichting Nederland | last2 = ME/CVS Vereniging | authorlink2 = ME/CVS Vereniging | last3 = Steungroep ME en Arbeidsongeschiktheid | authorlink3 = Steungroep ME en Arbeidsongeschiktheid | title = RE: PACE Trial Data | date = Mar 15, 2016}}</ref> ---- '''TO:''' [[Queen_Mary_University_of_London |QMUL]] FROM: [[ME/CFS Australia (SA) Inc]] RE: [[PACE trial]] Data DATE: March 30, 2016<ref>[http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm TO: [[Queen Mary University of London|QMUL]] FROM: ME/CFS Australia (SA) Inc RE: [[PACE trial]] Data DATE: March 30, 2016]</ref> ---- '''TO:''' [[Medical Research Council]] FROM: [[Invest in ME Research|Invest in ME]] RE: PACE trial data DATE: September 3, 2016<ref>[http://www.investinme.org/IIME-Newslet-1609-01.htm TO: Medical Research Council FROM: Invest in ME RE: PACE trial date DATE: September 3, 2016]</ref> ---- '''TO:''' Dr. Robin Murray and Kenneth Kendler, [[Psychological Medicine]] FROM: 74 Signatories Healthcare Professionals and Professors; 27 ME/CFS Organiations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017<ref>[http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/ TO: Dr. Robin Murray and Kenneth Kendler, Psychological Medicine FROM: 74 Signatories Healthcare Professionals and Professors; 27 ME/CFS Organiations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017]</ref> '''Reposted with Added Signatories''' '''TO:''' Dr. Robin Murray and Kenneth Kendler, [[Psychological Medicine]] FROM: 91 Signatories Healthcare Professionals and Professors; 50 ME/CFS Organiations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 23, 2017<ref>[http://www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/ RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017]</ref> == [[GET]] and [[CBT]] == '''TO:''' Professor Moss Morris FROM: [[Maik Speedy |Dr. Maik Speedy]] ([[Doctor Speedy]]) RE: [[graded exercise therapy]]/[[cognitive behavioral therapy]] & Major Relapse DATE: July 10, 2015<ref>[http://niceguidelines.blogspot.com/2015/07/my-response-to-medically-unexplained.html TO: Professor Moss Morris FROM: Dr. Maik Speedy Dr. Speedy RE: GET/CBT & Major Relapse DATE: July 10, 2015]</ref> ---- '''TO:''' [[Lancet Psychiatry]] FROM: [[Frank Twisk]] RE: [[PACE trial]]: [[Cbt]] and [[GET]] are not rehabilitative therapies DATE: January 18, 2016<ref>[http://www.thelancet.com/pdfs/journals/lanpsy/PIIS2215-0366%2815%2900554-4.pdf TO: Lancet Psychiatry FROM: Frank Twisk RE: PACE: CBT and GET are not rehabilitative therapies DATE: January 18, 2016]</ref> ---- '''TO:''' Disbelievers FROM: [[L.A. Cooper]] RE: [[GET]] and [[CBT]] DATE: March 9, 2016<ref>[http://changeformechangeforus.co.uk/news-events/there-remains-truth-on-the-horizon-an-open-letter-to-disbelievers TO: Disbelievers FROM: L.A. Cooper RE: GET and CBT DATE: March 9, 2016]</ref> ---- '''TO:''' Dr. [[Elizabeth Unger]] and Dr. [[Jennifer McQuiston]] cc: Dr. [[Inger Damon]], Dr. [[Susan Levine]], [[Gustavo Seinos]] FROM: 11 US Organizations and 52 Advocates RE: ME/CFS treatment recommendations and disease statements on CDC's website DATE: November 30, 2016<ref>[https://dl.dropboxusercontent.com/u/89158245/CDC%20-%20community%20letter%20on%20website%20content%20Nov%202016.pdf TO: Dr. Elizabeth Unger and Dr. Jennifer McQuiston cc: Dr. Inger Damon, Dr. Susan Levine, Gustavo Seinos FROM: 11 US Organizations and 52 Advocates RE: ME/CFS treatment recommendations and disease statements on CDCβs website DATE: November 30, 2016]</ref> ---- '''TO:''' Mainstream Research Funders FAO: All persons with responsibility for research grant applications cc: Any persons with an interest in the above FROM: A. Kirby in behalf of [[OMEGA]] (Opposing [[MEGA]]) RE: This is a serious matter of public interest so please acknowledge receipt of this letter and note that correspondence will be in the public domain DATE: January 31, 2016<ref>[https://opposingmega.wordpress.com/2017/01/31/our-covering-letter-to-mainstream-research-funders/ TO: Mainstream Research Funders FAO: All persons with responsibility for research grant applications cc: Any persons with an interest in the above FROM: A. Kirby in behalf of [[OMEGA]] (Opposing MEGA) RE: This is a serious matter of public interest so please acknowledge receipt of this letter and note that correspondence will be in the public domain DATE: January 31, 2016]</ref> == Funding == '''TO:''' Dr. [[Francis Collins]], Dir. [[National_Institutes_of Health |NIH]] FROM: [[Brian Vastag]] RE: ME/CFS Funding DATE: July 14, 2015<ref>[http://www.lastwordonnothing.com/2015/07/14/dear-dr-collins-im-disabled-can-the-n-i-h-spare-a-few-dimes/comment-page-1/#comment-102694 TO: Dr. [[Francis Collins]], Dir. [[National Institutes of Health|NIH]] FROM: [[Brian Vastag]] RE: ME/CFS Funding DATE: July 14, 2015]</ref> ''Reprint in Washington Post, July 20, 2015''<ref>{{Cite news | url=https://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/ | title = I'm disabled. Can NIH spare a few dimes?|publisher=Washington Post | date = Jul 20, 2015 |first = Brian | last = Vastag | authorlink = Brian Vastag|access-date=2022-03-26}}</ref> ---- '''TO:''' [[Francis Collins]] FROM: Samuel RE: Funding [[ME/CFS]] DATE: February 19, 2016<ref>[http://thekafkapandemic.blogspot.com/2016/02/open-letter-to-francis-collins-director.html?spref=tw TO: Francis Collins, Dir. of NIH FROM: Samuel SUBJECT: Funding ME/CFS DATE: February 19, 2016]</ref> == Media Coverage == '''TO:''' Editor of Spectator Magazine FROM: [[Llewellyn King]] and [[Deborah Waroff]] RE: Rod Liddle Article on [[myalgic encephalomyelitis|ME]] DATE: October, 2015<ref>[https://www.gofundme.com/MECFSAlert TO: Editor of Spectator Magazine FROM: [[Llewellyn King]] and [[Deborah Waroff]] RE: Rod Liddle Article on ME DATE: October, 2015 gofundme page Update #22]</ref> '''TO:''' BBC: Lord Hall of Birkenhead FROM: [[Countess of Mar]] RE: Complaint to the BBC About [[FITNET]] Coverage DATE: December 8, 2016<ref>[https://m.facebook.com/story.php?story_fbid=1871874666431000&id=1482582732026864 TO: BBC: Lord Hall of Birkenhead FROM: Countess of Mar RE: Complaint to the BBC About FITNET Coverage DATE: December 8, 2016]</ref> == Psychiatric Classification == '''TO:''' Dr. [[Suzanne O'Sullivan]] FROM: [[Countess of Mar]] RE: Rebut of Psychiatric Classification of [[ME/CFS]] DATE: June 9, 2015<ref>[http://www.meactionuk.org.uk/Mar-to-Suzanne-OSullivan.pdf TO: Dr. Suzanne O'Sullivan FROM: Countess of Mar RE: Rebut of Psychiatric Classification of ME/CFS DATE: June 9, 2015]</ref> == Government == '''TO:''' Members In Congress FROM: [[Llewellyn King]] RE: Member of Congress prepared to take up a cause (ME/CFS) DATE: June 2, 2015<ref>[http://thehill.com/blogs/congress-blog/healthcare/243667-a-job-for-a-lone-congress-member-speak-up-for-a-forgotten TO: Members In Congress FROM: Llewellyn King RE: Member of Congress prepared to take up a cause (][[ME/CFS]]) DATE: June 2, 2015</ref> ''The Hill: Congress'' ---- '''TO:''' Governments, Funders, Medical Experts and Others FROM: [[Emily Collingridge]] RE: ME Awareness DATE: Re-post May 28, 2011<ref>[http://www.blogistan.co.uk/blog/mt.php/2011/05/28/me-awareness-emily-collingridges-appeal TO: Governments, Funders, Medical Experts and Others FROM:] [[Emily Collingridge]] RE: ME Awareness DATE: Re-post May 28, 2011 - Indigo Jo Blogs</ref> ---- '''TO:''' the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services FROM: ME/CFS Advocates RE: Urging the [[U.S. Department of Health and Human Services]] (HHS) to adopt the [[Canadian Consensus Criteria]] as the sole case definition for ME/CFS DATE: October 28, 2013 with an update on November 9, 2013<ref>{{Cite web |url = https://thoughtsaboutme.files.wordpress.com/2013/11/sebelius_letter_advocates_updated.pdf | title=An Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services | date = Nov 9, 2013 | website = [[Thoughts About M.E.]]}}</ref> == The [[ME/CFS]] Community == '''TO:''' ME/CFS Community FROM: [[Stuart Murdoch]] RE: [[Invest in ME Research|Invest in ME]] Guest Book DATE: November 2015<ref>[http://ldifme.org/message-from-stuart-murdoch/ TO: ME/CFS Community FROM: Stuart Murdoch RE: Invest In ME DATE: November 2015 Guest Book]</ref> ---- == [[NIH Post-Infectious ME/CFS Study]] == '''TO:''' [[Francis Collins]] and [[Avindra Nath]]; [[National Institutes of Health|NIH]] FROM: [[Mary Schweitzer]] RE: [[NIH Post-Infectious ME/CFS Study]] Date: March 4, 2016<ref>[http://slightlyalive.blogspot.com/2016/03/an-open-letter-to-dr-collins-and-dr.html TO: Dr. Collins and Dr. Nath] [[National Institutes of Health|NIH]] FROM: [[Mary Schweitzer]] SUBJECT: NIH Post-Infectious ME/CFS Study Date: March 4, 2016</ref> ---- '''TO:''' Dr. [[Sanjay Gupta]] FROM: [[Mary Schweitzer]] RE: MedPage Today Article "NIH Gears Up for First-Ever Chronic Fatigue Study - Patients' advocates share concerns about trial protocol, bias"<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 "NIH Gears Up for First-Ever Chronic Fatigue Study - Patients' advocates share concerns about trial protocol, bias" By: Dr. Sanjay Gupta MedPage Today Article]</ref> DATE: March 18, 2016<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html TO: Dr. [[Sanjay Gupta]] FROM: [[Mary Schweitzer]] RE: MedPage Today Article "NIH Gears Up for First-Ever Chronic Fatigue Study - Patients' advocates share concerns about trial protocol, bias" DATE: March 18, 2016]</ref> ---- == [[Esther Crawley]] == '''TO:''' TEDxBristol FROM: [[Carly Maryhew]] RE: Crawley's TEDxBristol talk "Disrupting Your View of ME" on 2 November 2017 Date: December 15, 2017 <ref>{{Cite web |url=https://www.s4me.info/index.php?threads/open-letter-to-tedxbristol-regarding-esther-crawleys-presentation-on-2-november-2017.1532/|first = Carly | last = Maryhew | authorlink = Carly Maryhew | title = Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017 | date = Dec 15, 2017|access-date=2022-03-26}}</ref> ---- == [[Opposition to Oxford Health NHS Foundation Trust: "Coping with Coronavirus: Fatigue"]] == '''TO:''' Oxford NHS Foundation Trust FROM: Over 20 professional or patient organisations, and researchers and UK politicians including [[Action for ME]], [[Invest in ME Research]], [[ME Association]], [[Physios for ME]], [[Carol Monaghan]] MP RE: Coping with Coronavirus: Fatigue leaflet Date: Apr 20, 2020 ---- ==References== {{Reflist}} [[Category:Open letters]] [[Category:Lists]]
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