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

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)

• Why the Name of an Illness is of Importance covers some good points, mentioning the trivializing of the illness, that patients find out symptoms are severe besides fatigue, and stigma linked to the name.
• The CDC changed the name to Myalgic Encephalomyelitis recently (see Chronic_fatigue_syndrome#Name_controversy)
• More Chronic_fatigue_syndrome#Name_controversy sources on the CFS page
• 2001, Assessing attitudes toward new names for chronic fatigue syndrome (Abstract)
• 2001, Patients' perceptions of medical care in chronic fatigue syndrome (Abstract)
• "CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible." ~ Dr Charles Shepherd, Medical Advisor, ME Association, who has ME
• A link to the evidence and examples of Stigma patients face from health professionals would be useful to add ~Njt (talk) 10:39, April 10, 2020 (PDT)
• Living with M.E., Charles Shepherd explains the issue with the excessive focus on fatigue in the name

Quotes from scientists might be helpful

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." ~ 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." ~ 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

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

• 2016, "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent" ~Njt (talk) 10:39, April 10, 2020 (PDT)

What nurses need to know

• New article and useful

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.

See post-exertional malaise.

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.

See Graded exercise therapy.

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.

See cognitive behavioral therapy.

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.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

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.

involving, related to or in the area of the kidneys

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

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

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.