Open letter to the Lancet

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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]

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:

Third letter[edit | edit source]

The third letter had over one hundred signatures:[7]

Leading experts:[edit | edit source]

Members of Parliament[edit | edit source]

Patient/Advocacy Organizations[edit | edit source]

  • Bury and Bolton ME/CFS & Fibromyalgia Support Group, UK
  • Chester MESH (ME self-help) group, Chester, UK
  • Group ME – The Hague/Dutch Citizens’ Initiative Recognize ME, The Netherlands
  • ME Advocates Ireland, Ireland
  • ME/CFS and Lyme Association of WA, Inc., Australia
  • ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of British Columbia, Canada
  • Norfolk & Suffolk ME Patient/Carer Group, UK
  • North London ME Network, UK
  • Nottingham ME Support Group, UK
  • Sheffield ME and Fibromyalgia Group, UK
  • 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. ↑ 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.
  2. ↑ 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.
  3. ↑ 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. ↑ 4.0 4.1 Tuller, David (February 10, 2016). "An open letter to The Lancet, again". Virology blog. Retrieved August 29, 2018.
  5. ↑ 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. ↑ 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.
  7. ↑ "Trial By Error: Open Letter to The Lancet, version 3.0". Virology blog. Retrieved January 3, 2019.

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.

cognition Thought processes, including attention, reasoning, and memory.

myalgic encephalomyelitis (M.E.) - 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.

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