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]

  • American ME and CFS Society, US
  • 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
  • Group ME – The Hague/Dutch Citizens’ Initiative Recognize ME, The Netherlands
  • ME Advocates Ireland, Ireland
  • ME Victoria, Canada
  • 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
  • Minnesota ME/CFS Alliance, US
  • Norfolk & Suffolk ME Patient/Carer Group, UK
  • North London ME Network, UK
  • Nottingham ME Support Group, UK
  • OMEGA (Oxfordshire ME Group for Action), UK
  • Research ME-CFS.CZ, Czech Republic
  • Sheffield ME and Fibromyalgia Group, UK
  • Steungroep ME en Arbeidsongeschiktheid, The Netherlands
  • 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. 1.01.1 Tuller, David (Nov 13, 2015). "An open letter to Dr. Richard Horton and The Lancet". www.virology.ws. Retrieved Aug 29, 2018. 
  2. sasusa (Mar 21, 2016). "PACE: The research that sparked a patient rebellion and challenged medicine - Sense About Science USA". Sense About Science USA. Retrieved Aug 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. 4.04.1 Tuller, David (Feb 10, 2016). "An open letter to The Lancet, again". www.virology.ws. Retrieved Aug 29, 2018. 
  5. 5.05.1 Tuller, David (Jun 19, 2018). "Trial By Error: An Open Letter to The Lancet, Two Years On". www.virology.ws. Retrieved Aug 29, 2018. 
  6. 6.06.1 Tuller, David (Jul 10, 2018). "Trial By Error: Yet Another Appeal to The Lancet, With More On Board". www.virology.ws. Retrieved Aug 29, 2018. 
  7. "Trial By Error: Open Letter to The Lancet, version 3.0". www.virology.ws. Retrieved Jan 3, 2019. 

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.

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.

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.

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.

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.

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