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

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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.[1]

Signatories[edit | edit source]

ME/CFS Patient Organizations[edit | edit source]

UK
Australia


Belgium
Denmark
Finland
Germany
Netherlands


Iceland
Ireland
Italy
Norway


Spain
Sweden
Switzerland
UK
UK
Ireland
USA
UK
Netherlands
Canada
USA
USA
International membership representing
many countries
USA
UK
USA

2nd open letter[edit | edit source]

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[edit | edit source]

New individuals added 23 March 2017


Added ME/CFS patient organiztions[edit | edit source]

New organizations added 23 March 2017

Canada
New Zealand
Chester, UK
Germany
Germany
Canada
UK
UK
UK
Australia
Australia
Australia
Netherlands
Canada
International membership representing many countries
Canada
USA
UK
UK
USA
Canada
UK
UK



Learn more[edit | edit source]

References[edit | edit source]

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.

chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.

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.

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.

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.

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.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.