Talk:Primer for doctors and researchers

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

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[edit source | reply | new]

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)[edit source | reply | new]

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

The grossly misnamed wording is on many primers. I don't really edit primers but here are some citations on the name which can be used. User:JaimeS User:Kmdenmark ~Njt (talk) 10:39, April 10, 2020 (PDT)

Quotes from scientists might be helpful[edit source | reply | new]

including about the name controversy -

  • "Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in."[4] ~ Dr Nina Muirhead
  • "The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."[4] ~ Dr Nina Muirhead, 2019
  • see http://www.me-pedia.org/wiki/Individual_quotes#Researchers.2C_scientists.2C_doctors_and_professors
  • "Because the complaints of patients were so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble."[11] ~ Dr. Erich Ryll
or patients, eg
  • "Eventually I received a diagnosis of 'chronic fatigue syndrome,' a name that feels insulting when your entire life has been stolen from you."[37] ~ Ryan Prior ~Njt (talk) 10:39, April 10, 2020 (PDT)

Ethical issues and lack of informed consent[edit source | reply | new]

This seems important to cover. See Ethical issues and Patient abuse and mistreatment, plus

References[edit source | reply | new]

What nurses need to know[edit source | reply | new]