Open letter to the Lancet
On 13 November 2015, an open letter to the medical journal,The Lancet, was directed at its editor, Dr. Richard Horton, by six experts in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, calling for the PACE trial data to be independently reanalysed.[1] The Lancet published an article in on the PACE trial in 2011, Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomized trial, in which claims made by the trial authors have since been shown to be in error after being sued to release the study's raw data.[2][3]
Following a lack of response, the open letter was submitted again three months later, this time with 42 signatories.[4] A third letter was sent 10 June 2018 and had 94 signatories.[5] The third letter was resent on July 9th, 2018 and had additional signatories which included Members of Parliament, the Countess of Mar, and patient advocacy organizations.[6]
Letters[edit | edit source]
- Nov 13, 2015, An open letter to Dr. Richard Horton and The Lancet[1]
- Feb 10, 2016, An open letter to The Lancet, again - Virology blog[4]
- Jun 19, 2018, Trial By Error: An Open Letter to The Lancet, Two Years On - Virology blog[5]
- Jul 9, 2018, Trial By Error: Yet Another Appeal to The Lancet, With More On Board[6]
Signatories[edit | edit source]
First letter[edit | edit source]
The first letter had 6 signatures:
Second letter[edit | edit source]
The second letter had 42 signatures:
- Ronald Davis
- Jonathan Edwards
- Leonard Jason
- Bruce Levin
- Vincent Racaniello
- Arthur Reingold
- Dharam Ablashi
- James Baraniuk
- Lisa Barcellos
- Lucinda Bateman
- David Bell
- Alison Bested
- Gordon Broderick
- John Chia
- Lily Chu
- Derek Enlander
- Mary Ann Fletcher
- Kenneth Friedman
- David Kaufman
- Nancy Klimas
- Charles Lapp
- Susan Levine
- Alan Light
- Sonya Marshall-Gradisnik
- Peter Medveczky
- Zaher Nahle
- James Oleske
- Richard Podell
- Charles Shepherd
- Christopher Snell
- Nigel Speight
- Donald Staines
- Philip Stark
- Eleanor Stein
- John Swartzberg
- Ronald Tompkins
- Rosemary Underhill
- Rosamund Vallings
- Michael VanElzakker
- William Weir
- Marcie Zinn
- Mark Zinn
Third letter[edit | edit source]
The third letter had over one hundred signatures:[7]
Leading experts:[edit | edit source]
- Dharam Ablashi
- Lisa Alioto
- Michael Allen
- Christopher Armstrong
- James Baraniuk
- Lisa Barcellos
- Lucinda Bateman
- Alison C. Bested
- Charlotte Blease
- Molly Brown
- Robin Callender Smith
- John Chia
- Lily Chu
- Barbara Comerford
- Joan Crawford
- Janet Dafoe
- Todd Davenport
- Ronald Davis
- Lucy Dechene
- Simon Duffy
- Jonathan Edwards
- Valerie Eliot Smith
- Derek Enlander
- Meredyth Evans
- W.A. Faas
- Margaret C. Fernald
- Mary Ann Fletcher
- Kenneth Friedman
- Robert Garry
- Keith Geraghty
- Simin Ghatineh
- Ian Gibson
- Claudia Gillberg
- Mike Godwin
- Rebecca Goldin
- Alan Gurwitt
- Geoffrey Hallmann
- Maureen Hanson
- Malcolm Hooper
- Leonard Jason
- Daniel Kahn
- Michael Kahn
- Keith Kahn-Harris
- Jon Kaiser
- David Kaufman
- Betsy Keller
- Nancy Klimas
- Andreas Kogelnik
- Anthony L. Komaroff
- Richard Kwiatek
- Eliana Lacerda
- Charles Lapp
- Keith R. Laws
- Bruce Levin
- Donald Lewis
- Alan Light
- Vincent Lombardi
- Rogier Louwen
- Alex Lubet
- Steven Lubet
- Kristin Luker
- Darren Lynch
- Countess of Mar
- David Marks
- Sonya Marshall-Gradisnik
- Marlon Maus
- Neil McGregor
- Patrick McKnight
- Marvin Medow
- Peter G. Medveczky
- Jose G. Montoya
- Sarah Myhill
- Luis Nacul
- Zaher Nahle
- Heidi Nicholl
- James Oleske
- Elisa Oltra
- Nigel Paneth
- Richard Podell
- Nicole Porter
- Vincent Racaniello
- Arthur Reingold
- Peter C. Rowe
- Michael Scott
- Sarah Selke
- Charles Shepherd
- Christopher Snell
- Nigel Speight
- Donald Staines
- Philip Stark
- Eleanor Stein
- Staci Stevens
- Julian Stewart
- Leonie Sugarman
- John Swartzberg
- Ronald Tompkins
- Barbara True
- Samuel Tucker
- David Tuller
- Rosemary Underhill
- Derya Unutmaz
- AM Uyttersprot
- Rosamund Vallings
- Linda van Campen
- Mark VanNess
- Mark Vink
- Frans Visser
- Tony Ward
- William Weir
- John Whiting
- Sadie Whittaker
- Carolyn Wilshire
- Marcie Zinn
Members of Parliament[edit | edit source]
- Sir Edward Davey MP, Kingston and Surbiton, England, UK
- David Drew MP, Stroud, England, UK
- Patricia Gibson MP, North Ayrshire and Arran, Scotland, UK
- Mary Glindon MP, North Tyneside, England, UK
- Sandy Martin MP, Ipswich, England, UK
- Carol Monaghan MP, Glasgow North West, Scotland, UK
- Nicky Morgan MP, Loughborough, England, UK
- Alex Sobel MP, Leeds North West, England, UK
- Graham Stringer MP, Blackley and Broughton, England, UK
- Stephen Timms MP, East Ham, England, UK
Patient/Advocacy Organizations[edit | edit source]
- 25% ME Group, Support for severe ME sufferers, UK
- Action CND, Canada
- Action for ME, UK
- Associated New Zealand ME Society, New Zealand
- Bury and Bolton ME/CFS & Fibromyalgia Support Group, UK
- Chester MESH (ME self-help) group, Chester, UK
- Dr Sarah Myhill's MAIMES Medical Abuse In ME Sufferers Campaign, UK
- Emerge Australia, Australia
- European ME Alliance: Belgium ME/CFS Association, Belgium; Research ME-CFS.CZ, Czech Republic; ME Foreningen, Denmark; Suomen CFS-Yhdistys, Finland; Fatigatio e.V., Germany; Het Alternatief, Netherlands; Hope 4 ME & Fibro Northern Ireland, UK; Icelandic ME Association, Iceland; Irish ME Trust, Ireland; Associazione CFS Onlus-Veneto, Italy; Norges ME-forening, Norway; Liga SFC, Spain; Riksföreningen för ME-patienter, Sweden; Verein ME/CFS Schweiz, Switzerland, Invest in ME Research,UK
- German Association for ME/CFS, Deutsche Gesellschaft für ME/CFS e.V., Germany
- Group ME – The Hague/Dutch Citizens’ Initiative Recognize ME, The Netherlands
- Irish ME/CFS Association, Ireland
- Leeds ME Network, UK
- Lost Voices Stiftung (Fondation), Hannover/ Germany
- #MEAction Network: #MEAction US, #MEAction UK, #MEAction Scotland, #MEAction Australia
- ME Advocates Ireland, Ireland
- ME Association, UK
- ME North East, UK
- ME Research UK, UK
- ME Victoria, Canada
- ME/CFS (Australia) Ltd, Australia
- ME/CFS and Lyme Association of WA, Inc., Australia
- ME/CFS Australia (SA) Inc, Australia
- ME/CVS Stichting Nederland, Netherlands
- ME/CVS Vereniging, Netherlands
- ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of British Columbia, Canada
- Millions Missing Canada, Canada
- National ME/FM Action Network, Canada
- Norfolk & Suffolk ME Patient/Carer Group, UK
- North London ME Network, UK
- Nottingham ME Support Group, UK
- Oxfordshire ME Group for Action (Oxfordshire ME Group for Action), UK
- Pandora Org, US
- Phoenix Rising, International membership representing many countries
- Research ME-CFS.CZ, Czech Republic
- Science For ME, International membership representing many countries
- Sheffield ME and Fibromyalgia Group, UK
- Steungroep ME en Arbeidsongeschiktheid, The Netherlands
- Tymes Trust (The Young ME Sufferers Trust), UK
- Wake-Up Call Beweging vzw (movement), Belgium
- WAMES (Welsh Association of ME & CFS Support), Wales, UK
Response[edit | edit source]
There has not been a direct response to the letter from Richard Horton or The Lancet.
See also[edit | edit source]
References[edit | edit source]
- ↑ 1.0 1.1 Tuller, David (November 13, 2015). "An open letter to Dr. Richard Horton and The Lancet". Virology blog. Retrieved August 29, 2018.
- ↑ sasusa (March 21, 2016). "PACE: The research that sparked a patient rebellion and challenged medicine - Sense About Science USA". Sense About Science USA. Retrieved August 29, 2018.
- ↑ Wilshire, C; Kindlon, T; Matthees, A; McGrath, S (2017), "Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial", Fatigue: Biomedicine, Health & Behavior, 5 (1): 43-56, doi:10.1080/21641846.2017.1259724
- ↑ 4.0 4.1 Tuller, David (February 10, 2016). "An open letter to The Lancet, again". Virology blog. Retrieved August 29, 2018.
- ↑ 5.0 5.1 Tuller, David (June 19, 2018). "Trial By Error: An Open Letter to The Lancet, Two Years On". Virology blog. Retrieved August 29, 2018.
- ↑ 6.0 6.1 Tuller, David (July 10, 2018). "Trial By Error: Yet Another Appeal to The Lancet, With More On Board". Virology blog. Retrieved August 29, 2018.
- ↑ "Trial By Error: Open Letter to The Lancet, version 3.0". Virology blog. Retrieved January 3, 2019.