List of open letters from patient advocates and advocacy organizations

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

PACE trial[edit | edit source]

TO: Dr. Richard Horton Editor The Lancet FROM: Invest in ME RE: PACE trial Paper DATE: November 14, 2015[1]



TO: Daily Telegraph and Other Websites FROM: Dr. Neil Abbot, ME Research UK RE: PACE trial Reports DATE: October 28, 2015[2]



TO: The Lancet FROM: Alison Rae, Action CIND RE: Address Correspondence about PACE trial DATE: February 13, 2016[3]



TO: QMUL FROM: 25 Percent ME Group RE: PACE trial Data Requests DATE: February 10, 2016[4]



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[5]



TO: Association of Young People with ME (AYME) FROM: Clark Ellis RE: PACE trial DATE: February 18, 2016[6]



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[7]



TO: QMUL FROM: Action for ME RE: Release PACE trial Data DATE: February 26, 2016[8]



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[9]



TO: QMUL FROM: Irish ME Trust RE: Release PACE trial Data DATE: February 22, 2016[10]



TO: QMUL FROM: ME-gids RE: PACE trial Data DATE: March 7, 2016[11]



TO: QMUL FROM: ME/CVS-Stichting Nederland; ME/CVS Vereniging; Steungroep ME en Arbeidsongeschiktheid RE: PACE trial Data DATE: March 15, 2016[12]



TO: QMUL FROM: ME/CFS Australia (SA) Inc RE: PACE trial Data DATE: March 30, 2016[13]



TO: Medical Research Council FROM: Invest in ME RE: PACE trial data DATE: September 3, 2016[14]



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[15]

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[16]

GET and CBT[edit | edit source]

TO: Professor Moss Morris FROM: Dr. Maik Speedy (Doctor Speedy) RE: graded exercise therapy/cognitive behavioral therapy & Major Relapse DATE: July 10, 2015[17]



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



TO: Disbelievers FROM: L.A. Cooper RE: GET and CBT DATE: March 9, 2016[19]



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[20]



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[21]

Funding[edit | edit source]

TO: Dr. Francis Collins, Dir. NIH FROM: Brian Vastag RE: ME/CFS Funding DATE: July 14, 2015[22]

Reprint in Washington Post, July 20, 2015[23]



TO: Francis Collins FROM: Samuel RE: Funding ME/CFS DATE: February 19, 2016[24]


Media Coverage[edit | edit source]

TO: Editor of Spectator Magazine FROM: Llewellyn King and Deborah Waroff RE: Rod Liddle Article on ME DATE: October, 2015[25]


TO: BBC: Lord Hall of Birkenhead FROM: Countess of Mar RE: Complaint to the BBC About FITNET Coverage DATE: December 8, 2016[26]

Psychiatric Classification[edit | edit source]

TO: Dr. Suzanne O'Sullivan FROM: Countess of Mar RE: Rebut of Psychiatric Classification of ME/CFS DATE: June 9, 2015[27]


Government[edit | edit source]

TO: Members In Congress FROM: Llewellyn King RE: Member of Congress prepared to take up a cause (ME/CFS) DATE: June 2, 2015[28] The Hill: Congress



TO: Governments, Funders, Medical Experts and Others FROM: Emily Collingridge RE: ME Awareness DATE: Re-post May 28, 2011[29]



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[30]


The ME/CFS Community[edit | edit source]

TO: ME/CFS Community FROM: Stuart Murdoch RE: Invest in ME Guest Book DATE: November 2015[31]



NIH Post-Infectious ME/CFS Study[edit | edit source]

TO: Francis Collins and Avindra Nath; NIH FROM: Mary Schweitzer RE: NIH Post-Infectious ME/CFS Study Date: March 4, 2016[32]



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"[33] DATE: March 18, 2016[34]


Esther Crawley[edit | edit source]

TO: TEDxBristol FROM: Carly Maryhew RE: Crawley's TEDxBristol talk "Disrupting Your View of ME" on 2 November 2017 Date: December 15, 2017 [35]

Opposition to Oxford Health NHS Foundation Trust: "Coping with Coronavirus: Fatigue"[edit | edit source]

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[edit | edit source]

  1. ↑ TO: Dr Richard Horton Editor The Lancet FROM: Invest In ME RE: PACE Trial Paper DATE: November 14, 2015
  2. ↑ TO: Daily Telegraph and Other Websites FROM: ME Research UK RE: PACE Trial Reports DATE: October 28, 2015
  3. ↑ TO: The Lancet FROM: Alison Rae Action CIND RE: Address Correspondence about PACE trial DATE: February 13, 2016
  4. ↑ TO: QMUL FROM: 25 Percent ME Group RE: PACE trial Data Requests DATE: February 10, 2016
  5. ↑ 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
  6. ↑ TO: AYME FROM: Clark Ellis SUBJECT: PACE trial DATE: February 18, 2016
  7. ↑ 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
  8. ↑ TO: QMUL FROM: Action for ME Subject: Release PACE trial Data DATE: February 26, 2016
  9. ↑ TO: QMUL, Paul Smallcombe, Professor Simon Gaskell; The Lancet, Richard Horton FROM: Groep ME-DenHaag SUBJECT: Release PACE trial Data DATE: February 24, 2016
  10. ↑ TO: QMUL FROM: Irish ME Trust SUBJECT: Release PACE trial Data DATE: February 22, 2016
  11. ↑ TO: QMUL FROM: ME-gids Subject: PACE trial Data DATE: March 7, 2016
  12. ↑ ME/CVS-Stichting Nederland; ME/CVS Vereniging; Steungroep ME en Arbeidsongeschiktheid (March 15, 2016). "RE: PACE Trial Data" (PDF). Archived from the original (PDF) on April 20, 2016.
  13. ↑ TO: QMUL FROM: ME/CFS Australia (SA) Inc RE: PACE trial Data DATE: March 30, 2016
  14. ↑ TO: Medical Research Council FROM: Invest in ME RE: PACE trial date DATE: September 3, 2016
  15. ↑ 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
  16. ↑ RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017
  17. ↑ TO: Professor Moss Morris FROM: Dr. Maik Speedy Dr. Speedy RE: GET/CBT & Major Relapse DATE: July 10, 2015
  18. ↑ TO: Lancet Psychiatry FROM: Frank Twisk RE: PACE: CBT and GET are not rehabilitative therapies DATE: January 18, 2016
  19. ↑ TO: Disbelievers FROM: L.A. Cooper RE: GET and CBT DATE: March 9, 2016
  20. ↑ 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
  21. ↑ 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
  22. ↑ TO: Dr. Francis Collins, Dir. NIH FROM: Brian Vastag RE: ME/CFS Funding DATE: July 14, 2015
  23. ↑ Vastag, Brian (July 20, 2015). "I'm disabled. Can NIH spare a few dimes?". Washington Post. Retrieved March 26, 2022.
  24. ↑ TO: Francis Collins, Dir. of NIH FROM: Samuel SUBJECT: Funding ME/CFS DATE: February 19, 2016
  25. ↑ TO: Editor of Spectator Magazine FROM: Llewellyn King and Deborah Waroff RE: Rod Liddle Article on ME DATE: October, 2015 gofundme page Update #22
  26. ↑ TO: BBC: Lord Hall of Birkenhead FROM: Countess of Mar RE: Complaint to the BBC About FITNET Coverage DATE: December 8, 2016
  27. ↑ TO: Dr. Suzanne O'Sullivan FROM: Countess of Mar RE: Rebut of Psychiatric Classification of ME/CFS DATE: June 9, 2015
  28. ↑ TO: Members In Congress FROM: Llewellyn King RE: Member of Congress prepared to take up a cause (ME/CFS) DATE: June 2, 2015
  29. ↑ TO: Governments, Funders, Medical Experts and Others FROM: Emily Collingridge RE: ME Awareness DATE: Re-post May 28, 2011 - Indigo Jo Blogs
  30. ↑ "An Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services" (PDF). Thoughts About M.E. November 9, 2013.
  31. ↑ TO: ME/CFS Community FROM: Stuart Murdoch RE: Invest In ME DATE: November 2015 Guest Book
  32. ↑ TO: Dr. Collins and Dr. Nath NIH FROM: Mary Schweitzer SUBJECT: NIH Post-Infectious ME/CFS Study Date: March 4, 2016
  33. ↑ "NIH Gears Up for First-Ever Chronic Fatigue Study - Patients' advocates share concerns about trial protocol, bias" By: Dr. Sanjay Gupta MedPage Today Article
  34. ↑ 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
  35. ↑ Maryhew, Carly (December 15, 2017). "Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017". Retrieved March 26, 2022.
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