Talk:Primer for doctors and researchers

I have the citations on PEM w/o the template. I hope that is OK, I thought it best to get the citations in and if someone feels they should be in a template format they have the option to edit in.--DxCFS (talk) 10:36, 16 August 2016 (PDT)

GET & CBT origins - not based on PACE trial

Citations needed GET & CBT were rolled out in the UK with the 2007 NICE guidelines, and used sporadically before that the first PACE study was not published until 2012. PACE was designed to end the controversy over GET & CBT, which had many previous trials. Trudie Chalder may be been the creator of CBT for ME & CFS, possibly with others, around 1988. Graded Exercise Therapy was also developed in the late 1980s or early 1990s, with research on the deconditioning found in patients used as a justification for "reconditioning them". GET was heavily promoted by Simon Wessely and the Wessely school psychiatrists, including Michael Sharpe who helped develop the Oxford criteria. Trudie Chalder was one of the first to publish a book on CBT for chronic fatigue syndrome and developed the Chalder fatigue scale, with its flawed "bimodal" scoring - which allowed researchers to choose from two different scoring methods which did not give the same results. notjusttired (talk) 14:10, 20 January 2019 (EST)

Emotional language; better citations needed -- JaimeS (talk) 12:39, February 26, 2020 (EST)

This page had some emotional language, including that CFS was "grossly misnamed". This is not a matter of disagreeing with that, but needing to keep our language objective. Alternatives might include, "the patient community has often expressed that the name 'Chronic Fatigue Syndrome' is inappropriate and minimizing, given that the quality of life of a person with ME is lower than that of those suffering from multiple sclerosis, chronic renal failure, and many kinds of cancer." Note that it explicitly frames dislike of the name as an opinion (which we can still cite from a peer-reviewed source; there are a lot of papers that mention this issue with the name) -- and then follows it up with a citable FACT that provides legitimacy/contextualizes this opinion, essentially providing evidence that patients have every right to feel disgruntled with this name.

Science Guidelines says: "It's important to omit descriptive words that encourage the reader to think in a certain way, such as adjectives and adverbs. For example, "intriguingly", "disastrously", and other adverbs inform the reader what they ought to think about the next piece of information. The facts must speak for themselves."

Second, we have a heavy load of patient-written blogs as sources. This is advised against in the Science Guidelines. It is especially out of place here, where this page is oriented towards researchers and clinicians.

You can find this info and more here: https://me-pedia.org/wiki/MEpedia:Science_guidelines

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

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.

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.

renal involving, related to or in the area of the kidneys