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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.--[[User:DxCFS|DxCFS]] ([[User talk: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. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:10, 20 January 2019 (EST) == Emotional language; better citations needed -- [[User:JaimeS|JaimeS]] ([[User talk: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]] ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 10:39, April 10, 2020 (PDT) * [https://www.iacfsme.org/Why-the-Name-of-An-Illness-is-of-Importance 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<ref>{{Cite journal | last= Jason | first = L.A. | authorlink = Leonard Jason | last2 = Eisele | first2 = H.|author-link2 = H Eisele | last3 = Taylor | first3=R.R. | authorlink3 = Renee Taylor | author-link4 = | authorlink5 = | date = Dec 2001 | title = Assessing attitudes toward new names for chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11817200|journal=Evaluation & the Health Professions|volume=24|issue=4|pages=424–435|doi=10.1177/01632780122034993|issn=0163-2787|pmid=11817200|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pubmed/11817200 (Abstract)] *2001, Patients' perceptions of medical care in chronic fatigue syndrome<ref name="Deale2001">{{Cite journal | last =Deale | first = A.|author-link=Alicia Deale | last2 = Wessely | first2 = S. | author-link2 = Simon Wessely | date = Jun 2001 | title = Patients' perceptions of medical care in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/m/pubmed/11352411/|journal=Social Science & Medicine (1982)|volume=52|issue=12|pages=1859–1864|issn=0277-9536|pmid=11352411|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/m/pubmed/11352411/ (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."<ref >{{Cite web|url=https://www.meassociation.org.uk/2015/02/name-change-committee-report-comments-by-dr-charles-shepherd-medical-adviser-me-association-11-february-2015/ | last =Shepherd | first = Charles|website=[[ME Association]]|title=Name change committee report {{!}} Comments by Dr Charles Shepherd| date = 2015-04-11}}</ref > ~ Dr [[Charles Shepherd]], Medical Advisor, [[ME Association]], who has ME * A link to the evidence and examples of [[Stigma_and_discrimination#Stigma_from_health_professionals |Stigma patients face from health professionals]] would be useful to add ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 10:39, April 10, 2020 (PDT) * [https://books.google.com/books/about/Living_With_M_E.html?id=Dm6Xt6pk8aQC 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."<ref name="Muirhead2019">Medical {{Citation | last =Muirhead | first = Nina | authorlink = Nina Muirhead | url =https://www.rcplondon.ac.uk/news/do-you-really-believe-me|title=Do you really believe in ME?|website=Royal College of Physicians| date = 2019}}</ref> ~ 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."<ref name="Muirhead2019"/> ~ 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 ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 10:39, April 10, 2020 (PDT) ==Ethical issues and lack of informed consent == This seems important to cover. See [[Ethical issues]] and [[Ethical_issues#Patient_abuse_and_mistreatment|Patient abuse and mistreatment]], plus *2016, [https://www.research.manchester.ac.uk/portal/en/publications/cognitive-behavioural-therapy-in-the-treatment-of-chronic-fatigue-syndrome-a-narrative-review-on-efficacy-and-informed-consent(987590d0-a62d-473e-8d46-b74b9247e81c).html "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent"]<ref name="BleaseGeraghty2016a">{{Cite journal | last1 = Blease | first1 = Charlotte | authorlink1 = Charlotte Blease | last2 = Geraghty | first2 = Keith | authorlink2 = Keith Geraghty | title = Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent | journal = Journal of Health Psychology | date = Sep 15, 2016 | doi = 10.1177/1359105316667798 | url = https://doi.org/10.1177/1359105316667798 }}</ref> ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 10:39, April 10, 2020 (PDT) ===References=== {{Reflist}} ==What nurses need to know == *[https://journals.lww.com/nursing/fulltext/2020/04000/chronic_fatigue_syndrome__what_nurses_need_to_know.15.aspx New article] and useful
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