List of open letters from patient advocates and advocacy organizations

PACE trial
TO: Dr. Richard Horton Editor The Lancet  FROM: Invest in ME RE: PACE trial Paper  DATE: November 14, 2015

TO: Daily Telegraph and Other Websites  FROM: Dr. Neil Abbot, ME Research UK RE: PACE trial Reports  DATE: October 28, 2015

TO: The Lancet FROM: Alison Rae, Action CIND RE: Address Correspondence about PACE trial DATE: February 13, 2016

TO: QMUL FROM: 25 Percent ME Group RE: PACE trial Data Requests DATE: February 10, 2016

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

TO: Association of Young People with ME (AYME) FROM: Clark Ellis RE: PACE trial DATE: February 18, 2016

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 RE: Release PACE trial data from QMUL DATE: February 16, 2016

TO: QMUL FROM: Action for ME RE: Release PACE trial Data DATE: February 26, 2016

TO: QMUL, Paul Smallcombe, Professor Simon Gaskell; The Lancet Richard Horton FROM: Groep ME-Den Haag RE: Release PACE trial Data DATE: February 24, 2016

TO: QMUL FROM: Irish ME Trust RE: Release PACE trial Data DATE: February 22, 2016

TO: QMUL FROM: ME-gids RE: PACE trial Data DATE: March 7, 2016

TO: QMUL FROM: ME/CFS Stitching Nederland; ME/CVS Vereniging; Steungroep ME RE: PACE trial Data DATE: March 15, 2016

TO: QMUL FROM: ME/CFS Australia (SA) Inc RE: PACE trial Data DATE: March 30, 2016

TO: Medical Research Council FROM: Invest in ME RE: PACE trial data DATE: September 3, 2016

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

Reposted w 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

GET and CBT
TO: Professor Moss Morris  FROM: Dr. Maik Speedy (Doctor Speedy)  RE: graded exercise therapy/cognitive behavioral therapy & Major Relapse  DATE: July 10, 2015

TO: Lancet Psychiatry FROM: Frank Twisk RE: PACE trial: Cbt and GET are not rehabilitative therapies DATE: January 18, 2016

TO: Disbelievers FROM: L.A. Cooper  RE: GET and CBT DATE: March 9, 2016

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

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

Funding
TO: Dr. Francis Collins, Dir. NIH FROM: Brian Vastag  RE: ME/CFS Funding  DATE: July 14, 2015

Reprint in Washington Post, July 20, 2015

TO: Francis Collins FROM: Samuel RE: Funding ME/CFS DATE: February 19, 2016

Media Coverage
TO: Editor of Spectator Magazine  FROM: Llewellyn King and Deborah Waroff  RE: Rod Liddle Article on ME  DATE: October, 2015

TO: BBC: Lord Hall of Birkenhead FROM: Countess of Mar RE: Complaint to the BBC About FITNET Coverage DATE: December 8, 2016

Psychiatric Classification
TO: Dr. Suzanne O'Sullivan  FROM: Countess of Mar  RE: Rebut of Psychiatric Classification of ME/CFS DATE: June 9, 2015

Government
TO: Members In Congress  FROM: Llewellyn King  RE: Member of Congress prepared to take up a cause (ME/CFS)  DATE: June 2, 2015 The Hill: Congress

TO: Governments, Funders, Medical Experts and Others FROM: Emily Collingridge RE: ME Awareness DATE: Re-post May 28, 2011

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

The ME/CFS Community
TO: ME/CFS Community FROM: Stuart Murdoch RE: Invest in ME Guest Book  DATE: November 2015

NIH Post-Infectious ME/CFS Study
TO: Francis Collins and Avindra Nath; NIH FROM: Mary Schweitzer RE: NIH Post-Infectious ME/CFS Study Date: March 4, 2016

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

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

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