List of open letters from patient advocates and advocacy organizations

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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-DenHaag 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/CFS Stitching Nederland; ME/CVS Vereniging; Steungroep ME 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 Signators Healtcare Professionals and Professors; 27 ME/CFS Organiations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017[15]

Reposted w Added Signatories

TO: Dr. Robin Murray and Kenneth Kendler, Psychological Medicine FROM: 91 Signators Healtcare 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]



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. TO: QMUL FROM: ME/CFS Stitching Nederland; ME/CVS Vereniging; Steungroep ME RE: PACE Trial Data DATE: March 15, 2016
  13. TO: QMUL FROM: ME/CFS Australia (SA) Inc RE: PACEtrial 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 Signators Healtcare 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. [http:q//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]
  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. I’m disabled. Can NIH spare a few dimes? Reprint in Washington Post, July 20, 2015
  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. https://thoughtsaboutme.files.wordpress.com/2013/11/sebelius_letter_advocates_updated.pdf
  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-Ifectious 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. https://www.s4me.info/index.php?threads/open-letter-to-tedxbristol-regarding-esther-crawleys-presentation-on-2-november-2017.1532/

Association of Young People with ME (AYME) - AYME was a UK national charity supporting children and young people affected by ME/CFS with members under 25. Its lead medical advisor was Doctor Esther Crawley. In April 2017 the charity merged with Action for ME, forming its Children's Services department run by Mary-Jane Willows.

PACE trial - A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

bias - Bias in research is "a systematic deviation of an observation from the true clinical state".

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

PACE trial - A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.