An open letter to Psychological Medicine about “recovery” and the PACE trial

An open letter to Psychological Medicine about “recovery” and the PACE trial is a letter dated March 13, 2017 written to Dr. Robin Murray and Dr. Kenneth Kendler and Psychological Medicine, Cambridge University Press about the paper Recovery from chronic fatigue syndrome after treatments given in the PACE trial which claims there is a recovery for patients with Chronic fatigue syndrome (CFS) utilizing Graded Exercise Therapy (GET) and Cognitive behavioral therapy (CBT).

The letter concludes:


 * To protect patients from ineffective and possibly harmful treatments, White et al.’s recovery claims cannot stand in the literature. Therefore, we are asking Psychological Medicine to retract the paper immediately. Patients and clinicians deserve and expect accurate and unbiased information on which to base their treatment decisions. We urge you to take action without further delay.

Signatories

 * Dharam Ablashi, DVM, MS, Dip Bact
 * James Baraniuk, MD
 * Lisa Barcellos, MPH, PhD
 * Lucinda Bateman, MD
 * Alison Bested, MD, FRCPC
 * Molly Brown, PhD
 * John Chia, MD
 * Todd Davenport, PT, DPT, MPH, OCS
 * Ronald Davis, PhD
 * Simon Duffy, PhD, FRSA
 * Jonathan Edwards, MD
 * Derek Enlander, MD
 * Meredyth Evans, PhD
 * Kenneth Friedman, PhD
 * Robert Garry, PhD
 * Keith Geraghty, PhD
 * Ian Gibson, PhD
 * Rebecca Goldin, PhD
 * Ellen Goudsmit, PhD, FBPsS
 * Maureen Hanson, PhD
 * Malcolm Hooper, PhD
 * Leonard Jason, PhD
 * Michael Kahn, MD
 * Jon Kaiser, MD
 * David Kaufman, MD
 * Betsy Keller, PhD
 * Nancy Klimas, MD
 * Andreas Kogelnik, MD, PhD
 * Eliana Lacerda, MD, MSc, PhD
 * Charles Lapp, MD
 * Bruce Levin, PhD
 * Alan Light, PhD
 * Vincent Lombardi, PhD
 * Alex Lubet, PhD
 * Steven Lubet, JD
 * Sonya Marshall-Gradisnik, PhD
 * Patrick McKnight, PhD
 * Jose Montoya, MD, FACP, FIDSA
 * Zaher Nahle, PhD, MPA
 * Henrik Nielsen, MD
 * James Oleske, MD, MPH
 * Elisa Oltra, PhD
 * Richard Podell, MD, MPH
 * Nicole Porter, PhD
 * Vincent Racaniello, PhD
 * Arthur Reingold, MD
 * Anders Rosén, MD
 * Peter Rowe, MD
 * William Satariano, PhD
 * Ola Didrik Saugstad, MD, PhD, FRCPE
 * Charles Shepherd, MB, BS
 * Christopher Snell, PhD
 * Donald Staines, MBBS, MPH, FAFPHM, FAFOEM
 * Philip Stark, PhD
 * Eleanor Stein, MD, FRCP(C)
 * Staci Stevens, MA
 * Julian Stewart, MD, PhD
 * Leonie Sugarman, PhD
 * John Swartzberg, MD
 * Ronald Tompkins, MD, ScD
 * David Tuller, DrPH
 * Rosemary Underhill, MB, BS, MRCOG, FRCSE
 * Rosamund Vallings, MNZM, MB, BS
 * Michael VanElzakker, PhD
 * Mark VanNess, PhD
 * Mark Vink, MD
 * Frans Visser, MD
 * Tony Ward, MA (Hons), PhD, DipClinPsyc
 * William Weir, FRCP
 * John Whiting, MD
 * Carolyn Wilshire, PhD
 * Michael Zeineh, MD, PhD
 * Marcie Zinn, PhD
 * Mark Zinn, MM

ME/CFS Patient Organizations

 * 25 Percent ME Group
 * UK


 * Emerge Australia
 * Australia


 * European ME Alliance
 * Belgium ME/CFS Association
 * Belgium


 * ME Foreningen
 * Denmark


 * Suomen CFS-Yhdistys
 * Finland


 * Fatigatio e.V.
 * Germany


 * Het Alternatief
 * Netherlands


 * Icelandic ME Association
 * Iceland


 * Irish ME Trust
 * Ireland


 * Associazione Malati di CFS
 * Italy


 * Norges ME-forening
 * Norway


 * Liga SFC
 * Spain


 * Riksföreningen för ME-patienter
 * Sweden


 * Verein ME/CFS Schweiz
 * Switzerland


 * Invest in ME Research
 * UK


 * Hope 4 ME & Fibro NI
 * UK


 * Irish ME/CFS Association
 * Ireland


 * Massachusetts CFIDS/ME & FM Association
 * USA


 * ME Association
 * UK


 * ME/cvs Vereniging
 * Netherlands


 * National ME/FM Action Network
 * Canada


 * New Jersey ME/CFS Association
 * USA


 * PANDORA Org
 * USA


 * Phoenix Rising
 * International membership representing
 * many countries


 * Solve ME/CFS Initiative
 * USA


 * Tymes Trust (The Young ME Sufferers Trust)
 * UK


 * Wisconsin ME/CFS Association
 * USA

2nd open letter
An open letter to Psychological Medicine, again!

Sir Robin Murray responded to the first open letter: "Thank you for your letter and your continuing interest in the paper on the PACE Trial which Psychological Medicine published. I was interested to learn that Wilshire and colleagues have now published a reanalysis of the original data from the PACE Trial in the journal Fatigue: Biomedicine, Health & Behavior, a publication that I was not previously aware of. Presumably, interested parties will now be able to read this reanalysis and compare the scientific qualiity of the re-analysis with that of the original. My understanding is that this is the way that science advances."

The 2nd open letter responds to Sir Robin Murray: "This is an unacceptable response. Sir Murray is misguided if he believes that science advances by allowing misleading claims based on manipulated data to stand in the literature. When researchers include participants who were already “recovered” on key indicators at baseline, the findings are by definition so flawed and nonsensical they must be retracted.

That the editors of Psychological Medicine do not grasp that it is impossible to be “disabled” and “recovered” simultaneously on an outcome measure is astonishing and deeply troubling. It is equally astonishing that the PACE authors now defend themselves, as noted in a New York Times opinion piece on Sunday, by arguing that this overlap doesn’t matter because there were also other recovery criteria."

Reposting the open letter, 17 individuals and 23 more organizations added their signatures bringing the total signatories to 141.

Added signatories
New individuals added 23 March 2017
 * Norman Booth, PhD, FInstP
 * Joan Crawford, CPsychol, CEng, CSci, MA, MSc
 * Lucy Dechene, PhD
 * Valerie Eliot Smith
 * Margaret Fernald, PhD
 * Simin Ghatineh, MSc, PhD
 * Alan Gurwitt, M.D.
 * Geoffrey Hallmann, LLB, DipLegPrac
 * Susan Levine, MD
 * Marvin Medow, Ph.D.
 * Sarah Myhill MB BS
 * Pamela Phillips, Dip, Dip. MSc MBACP (registered)
 * Gwenda Schmidt-Snoek, PhD
 * Robin Callender Smith, PhD
 * Samuel Tucker, MD
 * AM Uyttersprot, MD
 * Paul Wadeson, Bsc, MBChB, MRCGP

Added ME/CFS patient organiztions
New organizations added 23 March 2017


 * Action CIND
 * Canada


 * Associated New Zealand ME Society
 * New Zealand


 * Chester MESH (ME self-help) group
 * Chester, UK


 * German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS)
 * Germany


 * Lost Voices Stiftung
 * Germany


 * M.E. Victoria Association
 * Canada


 * ME North East
 * UK


 * ME Research UK
 * UK


 * ME Self Help Group Nottingham
 * UK


 * ME/CFS and Lyme Association of WA, Inc.
 * Australia


 * ME/CFS (Australia) Ltd
 * Australia


 * ME/CFS Australia (SA), Inc.
 * Australia


 * ME/CVS Stichting Nederland
 * Netherlands


 * ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of British Columbia
 * Canada


 * MEAction
 * International membership representing many countries


 * Millions Missing Canada
 * Canada


 * National CFIDS Foundation, Inc.
 * USA


 * North London ME Network
 * UK


 * OMEGA (Oxfordshire ME Group for Action)
 * UK


 * Open Medicine Foundation
 * USA


 * Quebec ME Association
 * Canada


 * The York ME Community
 * UK


 * Welsh Association of ME & CFS Support
 * UK

Learn more

 * PACE trial
 * Open letters