List of open letters from researchers

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

PACE trial[edit | edit source]

TO: Mr. Paul Smallcombe, QMUL FROM: Ronald Davis, Bruce Levin & Vincent Racaniello PhD's and David Tuller, DrPH RE: Request for PACE trial Data DATE: December, 17, 2015[1]



TO: Dr. Richard Horton, Editor The Lancet FROM: Six Professors RE: Retraction of PACE trial Paper DATE: August 13, 2015[2] An update by Professor Vincent Racaniello: Once Again, Lancet Stumbles on PACE.[3]



TO: Dr. Richard Horton FROM: 43 Leading Scientists Clinicians RE: PACE Trial DATE: February 10, 2016[4] An update by Professor Vincent Racaniello: Once Again, Lancet Stumbles on PACE.[5]



TO: Dr. Richard Horton FROM: Dr. Malcolm Hooper RE: PACE Trial DATE: April 15, 2016[6]



TO: PLOS ONE Editors FROM: 5 Professors RE: PACE Trial DATE: May 23, 2016[7]



TO: Dr. Richard Horton FROM: David Tuller RE: 14 Questions for Dr. Horton DATE: September 1, 2016[8]



TO: Professor Simon Gaskell, QMUL FROM: 8 Signatories RE: PACE trial DATE: September 6, 2016[9]



TO: Dr. Robin Murray and Kenneth Kendler, Psychological Medicine FROM: 74 Signators Healthcare Professionals and Professors; 27 ME/CFS Organizations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017[10]


Funding and grants[edit | edit source]

TO: Various senators on the HELP committee FROM: A group of two dozen American scientists RE: ME/CFS Funding DATE: August 17, 2015 [11]



TO: Scientific Advisory Board NIH FROM: Principal Investigators RE: ME/CFS/SEID Biomarker Discovery Grants DATE: August 2015[12]

#MEAction Summary of: Ronald Davis NIH Proposal[13]



TO: Government Health Agencies, Media, Patient Community, Public FROM: Ronald Davis RE: A Plea for Funding - His Son Whitney Dafoe is Dying DATE: December 29, 2015[14]


Drug Treatments[edit | edit source]

TO: White House, HHS, Senate HELP Committee and House Energy Commerce Sub- Committee on Health, Drs. Woodcock, Chowdhury and Maynard FROM: Clinicians and Biomedical Experts in ME/CFS RE: Request FDA Facilitate 2-day Meeting for Treatment of ME/CFS DATE: June 5, 2015[15]


NIH P2P Report[edit | edit source]

TO: NIH P2P Panel Members FROM: Board members of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) RE: IACFS/ME Response to P2P Draft Report on ME/CFS DATE: January 17, 2015[16]


Libel accusations[edit | edit source]

TO: CMRC FROM: David Tuller RE: Dr. Esther Crawley Accusing Dr. Tuller and Virology blog of Libel DATE: May 8, 2017[17]


References[edit | edit source]

  1. ↑ TO: Mr. Paul Smallcombe, QMUL FROM: Davis, Levin & Racaniello PhD's and Tuller, DrPH RE: Request for PACE Trial Data DATE: December, 17, 2015
  2. ↑ TO: Dr. Richard Horton, Editor The Lancet FROM: Six Professors RE: Retraction of PACE trial Paper DATE: August 13, 2015
  3. ↑ Once Again, Lancet Stumbles on PACE - Virology Blog - Vincent Racaniello
  4. ↑ TO: Dr. Richard Horton FROM: 43 Leading Scientists Clinicians RE: PACE Trial DATE: February 10, 2016
  5. ↑ TO: Dr. Richard Horton FROM: 43 Leading Scientists Clinicians RE: PACE Trial DATE: February 10, 2016
  6. ↑ TO: Dr. Richard Horton FROM: Dr. Malcolm Hooper RE: PACE Trial DATE: April 15, 2016
  7. ↑ TO: PLoS One Editors FROM: 5 Professors RE: PACE Trial DATE: May 23, 2016
  8. ↑ TO: Dr. Richard Horton FROM: David Tuller RE: 14 Questions for Dr. Horton DATE: September 1, 2016
  9. ↑ TO: Professor Simon Gaskell, QMUL FROM: 8 Signatures RE: PACE trial - Urge QMUL not to appeal DATE: September 6, 2016
  10. ↑ TO: Dr. Robin Murray and Kenneth Kendler, Psychological Medicine FROM: 74 Signators Healthcare Professionals and Professors; 27 ME/CFS Organizations RE: GET/CBT "Recovery" Article in Psychological Medicine DATE: March 13, 2017
  11. ↑ TO: Various senators on the HELP committee FROM: A group of two dozen American scientists RE: ME/CFS Funding DATE: August 17, 2015
  12. ↑ TO: Scientific Advisory Board NIH FROM: Principal Investigators RE: ME/CFS/SEID Biomarker Discovery Grants DATE: August 2015
  13. ↑ #MEAction Summary of: Ronald Davis NIH Proposal
  14. ↑ TO: Government Health Agencies, Media, Patient Community, Public FROM: Ron Davis RE: A Plea for Funding - His Son Whitney is Dying DATE: December 29, 2015 - CFS Research Center at Stanford University - Face Book Page
  15. ↑ TO: White House, HHS, Senate HELP Committee and House Energy Commerce Sub- Committee on Health, Drs. Woodcock, Chowdhury, and Maynard FROM: Clinicians and Biomedical Experts in ME/CFS RE: Request FDA Facilitate 2-day Meeting for Treatment of ME/CFS DATE: June 5, 2015
  16. ↑ TO: NIH P2P Panel Members FROM: IACFS/ME Board members RE: IACFS/ME Response to P2P Draft Report on ME/CFS DATE: January 17, 2015
  17. ↑ TO: CMRC FROM: David Tuller RE: Dr. Esther Crawley Accusing Dr. Tuller and Virology blog of Libel DATE: May 8, 2017

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.

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.

See Graded exercise therapy.

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.

See cognitive behavioral therapy.

See National Institutes of Health.

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.

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