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Stigma and discrimination
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[[File:Rosa SEID.JPG|400px|thumb|Rosa age 25 in 1986 and mildly ill with [[ME/CFS]].|Rosa age 25 in 1986 and mildly ill with ME/CFS's core symptoms. In 2015 the SEID criteria were released. Rosa read about PEM and how it is delayed and makes ME/CFS symptoms like CF, OI, and cognition worse. Her life since age 17 fell into place as she never connected her worsening symptoms with increased physical or mental activity 24-72 hours prior. She believes not understanding PEM made her condition worsen over the years and is now disabled meeting the CCC with PEM "option"]] '''Stigma''' is "an attribute that links a person to an undesirable stereotype, leading other people to reduce the bearer from a whole and usual person to a tainted, discounted one."<ref>{{Cite book | title=Stigma: notes on the management of spoiled Identity | last = Goffman | first = E.|publisher=Simon and Schuster| year = 1983|isbn=|editor-link=|location=New York | page = 11|pages=|chapter=|quote=|editor-last2=|editor-link2=}}</ref> People with [[myalgic encephalomyelitis]] (ME) and [[chronic fatigue syndrome]] (CFS) often described feeling stigmatized and '''discriminated''' against.<ref name=":0" /><ref name=":1" /><ref name=":2" /><ref name=":3" /> {{Quote2|Sufferers of ME are often stigmatised and marginalised, as their conditions are not fully recognised by the Government or the medical profession. A number of my constituents suffer from ME. At least two have been bedridden for 30 years because of their condition, and their story is not uncommon.|Mohammad Yasin, MP|Appropriate ME Treatment debate (Jan 24, 2019)<ref name="hansardjan19"/>}} {{Quote frame |...believing ME/CFS is a condition that can be cured by [[illness beliefs |attitude]] and [[Graded exercise therapy |effort]] is stigmatizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves (or get blamed) for their suffering, and for the collective of people deeply affected... | author = [[Hilda Bastian]]|source=Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much<ref name ="Bastian2016">{{Cite web|url=https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/ | title = Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much | last = Bastian | first = Hilda | authorlink=Hilda Bastian | date = Feb 8, 2019 | website = [[PlosOne]]|language=en-US|archive-url=|archive-date=|access-date=2019-03-03}}</ref>}} === The Yuppie flu label === ME was dismissed as "[[Yuppie Flu|yuppie flu]]" and even "shirker syndrome" in the 1980s and described as a reaction to the stresses of modern life.<ref>{{Cite web|url=http://sacfs.asn.au/download/New%20York%20Times%20article%20(17-07-07).pdf | title = Chronic Fatigue no longer seen as Yuppie Flu | last = Tuller | first = David | authorlink = David Tuller | date = 2007 | website = New York Times|archive-url=|archive-date=|access-date=2018-12-30}}</ref> Under the label yuppie flu, [[Myalgic encephalomyelitis|ME]] was regarded as only affecting one group in society - young to middle-aged professionals.<ref>{{Cite journal | last = Dowsett | first=Elizabeth G. | author-link = Elizabeth Dowsett | date = Jan 1992|others=P D Welsby | title = Conversation piece. Interview by P. D. Welsby.|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/|journal=Postgraduate Medical Journal|volume=68|issue=795 | pages = 63–65|issn=0032-5473|pmc=2399326|pmid=1561197|quote=|via=}}</ref> === Stigma from the media === A number media interviews and newspaper coverage have presented negative views of patients with ME, including representing some reporting legitimate claims through official chanqqnels as harassing, or intimidating researchers described as "vilification" and listed alongside unproven allegations of criminal acts such as sending "death threats".<ref name=":6">{{Cite web|url=http://downloads.bbc.co.uk/bbctrust/assets/files/pdf/appeals/esc_bulletins/2012/feb.pdf | title = “Torrent of abuse” hindering ME research {{!}} Today programme {{!}} BBC Radio 4 | last = BBC News Online | first = | authorlink = BBC news | date = July 29, 2011 | website = |archive-url=|archive-date=|access-date=2019-03-02}}</ref> Murray et al. (2019) found a significant ''gender bias'' in their analysis of English newspaper articles featuring patients with ME/CFS, women were presented as more emotionally distressed with their physical symptoms minimized, and the impact on social and home functioning was emphasized, while men were portrayed as "action men" prior to their illness, with physical symptoms prominent and the impact on career and sports emphasized.<ref name="Murray2019"/> In other coverage, treatment success rates have been grossly exaggerated, with the controversial [[graded exercise therapy]] (GET) referred to as simply "[[exercise]]" in headlines rather than a specialist treatment.<ref name="BBCTodayFITNET">{{Cite web|url=https://downloads.bbc.co.uk/bbctrust/assets/files/pdf/appeals/esc_bulletins/2017/mar.pdf | title = Editorial Standards Findings Appeals to the Trust and other editorial issues considered by the Editorial Standards Committee: Decisions by the Head of Editorial Standards, Trust Unit February and March 2017 | last = BBC Trust | first=|authorlink=BBC | date = Mar 2017 | website = |archive-url=|archive-date=|access-date=2019-03-02}}</ref> A [[BBC news|BBC]] report, believed to be heavily influenced by the biased [[Science Media Centre]] (SMC), "overstated" and made inaccurate claims that the [[Netherlands|Dutch]] [[FITNET trial]] could cure "two-thirds" of [[United Kingdom|[British]] children with [[Chronic fatigue syndrome|CFS]] within 6 months, when the actual figure was under 40%, with those results heavily disputed due to including very broad diagnostic criteria, and the treatment only being available in 10% of the [[United Kingdom|UK]].<ref name="BBCTodayFITNET" /> A number of charities including [[Invest in ME Research]] and [[The ME Association]] have filed complaints or raised objections, in addition to individual patients.<ref name="IIMEpacebbc">{{Cite web|url=http://investinme.org/IIME-Newslet-1501-02.shtml | title = INVEST IN ME RESPONSE to BBC ARTICLE | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = Jan 2015 | website = [[Invest in ME Research]]|archive-url=|archive-date=|access-date=2019-03-02}}</ref><ref name=":6" /> The exaggerated recovery rates and headlines about "exercise" or a talking treatment have encouraged the public to stereotype patients as lazy, simply lacking the willingness to exercise, or as having [[:Category:Mental disorders|mental health]] problems. ===Stigma from the family, friends and the public === Patients with ME/CFS may be judged by friends as extremely lazy rather than ill, and become isolated from friends when they are too ill to spend time with others.<ref name="radio4-2007">{{Cite web|url=https://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml | title = Case notes: Programme number 10 - ME | last = BBC Radio 4 | first = | authorlink = BBC radio 4 | date = 2007 | website = |type=Transcript|archive-url=https://web.archive.org/web/20071221221638/https://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml|archive-date=Dec 21, 2007|url-status=dead|access-date=}}</ref><ref name=":11">{{Cite web|url=https://www.huffingtonpost.co.uk/entry/me-chronic-fatigue_uk_5ca38433e4b0c5dee18bbb33 | title = ME Affects Four Times More Women Than Men – Dismissing This Terrifying Illness Is Sexist | last = Richardson | first = Josie|authorlink=Josie Richardson | date = Apr 4, 2019 | website = [[Huffington Post]]|language=en|archive-url=|archive-date=|access-date=2019-04-10}}</ref> Work colleagues may accuse the person of being lazy, teachers may accuse children with ME of "enjoying themselves" when they are too ill to attend school.<ref name=":11" /> === Stigma from health professionals === A number of [[Wessely school|highly influential health professionals]] have made highly stigmatized, dismissive and offensive comments about patients with [[ME/CFS]], which continues to this day. Many patients in the UK and elsewhere in continue to report that their doctor was either openly skeptical about their ones, or expressed disbelief.<ref name="Deale2001" /><ref name="GeraghtyEsmail2016">{{Cite journal | last1 = Geraghty | first1 = Keith | authorlink1 = Keith Geraghty | last2 = Esmail | first2 = Aneez | authorlink2 = Aneez Esmail | title = Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm? | journal = British Journal of General Practice | volume = 66 | issue =649 | page = 437-438 | date = 1 Aug 2016 | doi = 10.3399/bjgp16X686473 | url = https://doi.org/10.3399/bjgp16X686473 }}</ref><ref name="obstruction" /> Similar experiences have been reported within disability assessments, and by clinicians at a specialist CFS/ME clinic in the UK.<ref name=":7" /><ref name=":9">{{Cite journal | last = Collings | first=Anthony D | authorlink = Anthony Collings | last2 = Newton | first2 = David | author-link2 = David Newton | date = Jun 18, 2014 | title = Is Chronic Fatigue Syndrome a meme?|url=https://forums.phoenixrising.me/threads/bmj-rapid-response-is-chronic-fatigue-syndrome-a-meme-18-june-2014.30944/|url-status=usurped|journal=[[The BMJ]]|language=en|volume=|issue=|pages=|doi=|issn=0959-8138|pmid=|archive-url=|archive-date=Jun 18, 2014|quote=|via=|pmc=|access-date=}}</ref> In 2019, a [[UK Parliament Commons Chamber debate 24th January 2019|UK parliament debate]] highlighted that the members of the medical profession did not fully recognize ME, which increased the stigma and the marginalization of people with ME.<ref name="hansardjan19">{{Cite web|url=https://hansard.parliament.uk/Commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment | title = Appropriate ME Treatment {{!}} 24 January 2019 Volume 653 | last = Hansard {{!}} UK Parliament | first= | author-link =| date = Jan 24, 2019 | website = hansard.parliament.uk|archive-url=|archive-date=|access-date=2019-01-25}}</ref> ME patients have been stereotyped in many ways, including being accused of having negative attitudes towards [[Mental health|mental illness]] and being [[Personality traits and patient attitudes in ME/CFS|"anti-psychiatry"]], however Wood & [[Simon Wessely|Wessely]] (1999) showed that attitudes towards mental illness are no different from those of other patient groups, for example [[rheumatoid arthritis]] patients.<ref>{{Cite journal | last = Wood | first=Barbara | authorlink = Barbara Wood | last2 = Wessely | first2 = Simon | authorlink2 = Simon Wessely | date = Oct 1999 | title = Personality and social attitudes in chronic fatigue syndrome|url=http://linkinghub.elsevier.com/retrieve/pii/S0022399999000252|journal=Journal of Psychosomatic Research|language=en|volume=47|issue=4|pages=385–397|doi=10.1016/S0022-3999(99)00025-2|quote=No differences were found between CFS and RA patients in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism), on either crude or adjusted analyses... There was no evidence from this study of major differences between the personalities of CFS patients and RA patients. The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.|via=}}</ref> ===Researchers with ME/CFS: stigma from academic colleagues === Scientists who work on [[biomedical research]] or treat patients outside of the psychiatry and exercise focused [[biopsychosocial model]] (BPS) have been denied work in their country's public health care system, portrayed as quacks, anti-science, struggled to get research funding or lab time and been isolated and ostracized by their peers.<ref name=":3" /><ref name=":5">{{Cite journal | last = Maes | first = Michael | authorlink = Michael Maes | last2 = Mihaylova | first2 = Ivana | authorlink2 = Ivana Mihaylova | last3 = Bosmans | first3=Eugene | authorlink3 = Eugene Bosmans | authorlink4 = | authorlink5 = | date = August 2007 | title = Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta|url=http://www.nel.edu/userfiles/articlesnew/NEL280407A15.pdf|journal=Neuro Endocrinology Letters|volume=28|issue=4|pages=456–462|issn=0172-780X|pmid=17693979|quote=For decades, CFS patients were (and still are) dismissed as lazybones or hypochondriacs. Since 1994, the baffling illness has received recognition by the introduction of diagnostic criteria [1]. Nevertheless, many medical doctors and insurance companies still assert that CFS merely is a mental condition. <br >Doctors who treat CFS patients as suffering from a biological disorder and scientists who deal with the psycho-neuro-immune pathophysiology of CFS are often considered quacks by some of their colleagues, insurance companies and anti-quack societies, which are sometimes officially supported by governments, e.g. the Dutch government, in order to eliminate the scientific view that CFS is an organic disorder. The latter obviously would mean that the national health care system is obliged to financially support those patients who now are considered hypochondriacs and thus are suspended from the national health care systems. In accordance, the mainstream, “evidence based” treatment for CFS is cognitive behavioural therapy, which means that patients with CFS are being treated as having a mental illness with “treatments” that do not treat any underlying pathophysiology. <br>There is, however, evidence that CFS is accompanied by severe immune disorders, such as activation of the inflammatory response system (IRS) and increased oxidative and nitrosative stress with a significant damage to membrane lipids and functional proteins [2–4].|via=}}</ref> Doctors, researchers and other health professionals who have called for controversial research or review articles to be retracted (withdrawn) on the grounds of not meeting adequate scientific standards have been labeled "activists" regardless of the scientific reasons they gave, the field they work in or their personal history. Professors at medical schools report that they have been instructed by their department chairs to stop seeing ME/CFS patients, have been denied promotions due to their ME/CFS research, have received unfounded letters of reprimand, and have been subjected to ethics investigations for using their medical school email and other medical school resources to investigate ME/CFS.<ref name=":10">{{Cite web|url=http://immunedysfunction.org/images/Elephants%20in%20the%20Room%20As%20Delivered.pdf | title = Elephants in the room | last = Friedman | first = Kenneth | authorlink = Kenneth Friedman | date = |website=|archive-url=|archive-date=|access-date=March 4, 2019}}</ref> A charity offered to donate a scholarship to a medical school, to benefit medical students who study ME/CFS, but the medical school refused the donation because "ME-CFS patients set up an artificial distinction between psychiatric and organic illness, and the school does not wish its students exposed to patients who make such a distinction."<ref name=":10" /> == Discrimination == [[Charlotte Blease|Blease]] and [[Keith Geraghty|Geraghty]] (2018) found that "medical authorities" used "widespread negative stereotyping of patients" and acted to marginalize and exclude patient voices, which created "epistemic injustice."<ref name=":4" /> For instance, patients who challenged the views or actions of medical authorities were labeled "militant" and "activists", with several mainstream newspapers reporting unfounded accusations that they sent "death threats" to ME/CFS researchers<ref name=":4" /> ===Effects of stigma === Stigma has resulted in patients being treated as * lazy or work shy, resulting in denial of [[Access to benefits|disability benefits]] and rejection from society and family<ref name=":5" /><ref name=":7">{{Cite web|url=https://www.meassociation.org.uk/2011/02/countess-of-mars-forward-me-group-minutes-of-meeting-26-january-2011/ | title = Countess of Mar’s ‘Forward ME’ Group – minutes of meeting, 26 January 2011 | last = Forward-ME | first = | authorlink = Forward-ME | date = Feb 2011 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-03-04}}</ref> * hypochondriacs<ref name=":5" /><ref name="GeraghtyEsmail2016" /> * not ill, or only having trivial symptoms,<ref name="obstruction" /> resulting in denying basic medical treatment and tests,<ref name="GeraghtyEsmail2016" /> and denial of funding for medical research * undeserving of medical care<ref name=":3" /><ref name=":5" /> * mentally ill, resulting in denial of medical care and disability aids, and limited / reduced disability or sickness payments<ref name=":8" /> * dangerous, threatening and mentally unstable<ref name=":4" /> * resistant to treatment, resulting in forced in-patient psychiatric care (including in children) * children with ME/CFS have been put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and [[Munchausen syndrome by proxy]]<ref name="colby2014">{{Cite web|url=https://www.tymestrust.org/pdfs/falseallegations.pdf | title = False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) | last = Colby | first = Jane|authorlink=Jane Colby | date = 2014 | website = [[Tymes Trust]]|archive-url=|archive-date=|access-date=}}</ref><ref name="panorama">{{Cite web|url=http://news.bbc.co.uk/2/hi/events/panorama/506549.stm | title = Panorama {{!}} Sick and Tired | last = BBC news | first=|authorlink=Sick and Tired - BBC | date = Nov 8, 1999 | website = BBC News|archive-url=|archive-date=|access-date=2019-02-12}}</ref><ref name="colby2014" /><ref name="VanHoof2006">{{Cite journal | last = Van Hoof | first = E. | author-link = E Van Hoof | last2 = De Becker | first2 = P. | authorlink2 = Pascale De Becker | last3 = De Meirleir | first3=K. | authorlink3 = Kenny De Meirleir | authorlink4 = | authorlink5 = | date = Jan 2006 | title = Pediatric Chronic Fatigue Syndrome and Munchausen-By-Proxy: A Case Study|url=https://books.google.co.uk/books?id=MrcUN2k91IMC&oi=fnd&pg=PA45#v=onepage&q&f=false|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=13|issue=2-3|pages=45–53|doi=10.1300/J092v13n02_02|issn=1057-3321|quote=|via=}}</ref> * children too ill to attend school, or even too ill to eat have been diagnosed with "[[Pervasive School Refusal Syndrome]]" or [[Pervasive Refusal Syndrome]], with their health limitations interpreted as a "behavioral" issue<ref>{{Cite web|url=http://www.investinme.org/IIME-Newslet-1604-NS999.shtml | title = The Elephant in the Room - The General Medical Council - Dr Nigel Speight | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = 2006 | website = [[Invest in ME Research]]|archive-url=|archive-date=|access-date=2019-02-15|quote=Where there are some doctors who do not believe in ME as a diagnosis or do not accept that children with ME can be so seriously ill that they need tube feeding then flawed diagnoses are introduced such as Pervasive Refusal Syndrome. It is in these cases that Dr Speight’s experience and knowledge have provided enormous help to child patients and their families.}}</ref> ==Examples of stigma and discrimination of ME/CFS == *2011, The Sun, best selling [[UK]] newspaper - [http://www.investinme.org/Article-505%20PCC%20Complaint%20Aug%202011%20I03.shtml Invest in ME Research Complaint] : By [[Rod Liddle]]: "ME, which used to be known as yuppie flu", "stigmatised as malingering mentals", "foaming paranoia" (which he claimed could be found on the [[ME Association]] website) *2011, ''The Times'' newspaper - [https://www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/ An interview with Professor Simon Wessely] [http://www.investinme.org/Article-505%20PCC%20Complaint%20Aug%202011%20I03.shtml Invest in ME Research Complaint] : By Stefanie Marsh: "Such was the vitriol and the constant ratcheting up of the threats emanating from the fringes that, ten years ago, Professor Wessely chose to give up his research." :''Untrue: This was 7 months after the [[PACE trial]] was published, which [[Simon Wessely |Wessely]] helped design the [[PACE trial]] and was a PACE trial center manager for several years, and still researchs ME/CFS'' :Professor [[Simon Wessely|Wessely]] comments "―They‘re (ME activists) not as bad as the animal liberation people ... ―But they‘re just as fanatical. It‘s constant stalking, harassment, attempts at intimidation." *2012, ''The Sun'' newspaper, [[UK]] [https://www.meassociation.org.uk/2012/01/that-nice-mr-liddle-in-todays-sun-viewspaper-26-january-2012/ ‘Pretend disabled’ really ARE sick] : By [[Rod Liddle]] started with: "My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of bad luck or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E." : [https://www.meassociation.org.uk/2012/02/the-sun-newspaper-and-their-columnist-rod-liddle-mea-complains-press-complaints-commission/ ME Association complaint], [https://www.meassociation.org.uk/2012/05/press-complaints-commission-uk-fibromyalgia-me-association-v-the-sun-2-may-2012/ Press Complaints Commission response] *2014, [[BMJ|The BMJ]] journal rapid response [https://forums.phoenixrising.me/threads/bmj-rapid-response-is-chronic-fatigue-syndrome-a-meme-18-june-2014.30944/ Is Chronic Fatigue Syndrome a meme?] : By Anthony Collings and David Newton, Essex CFS Service, UK. : [https://www.meassociation.org.uk/2014/06/shock-anger-and-concern-from-people-with-mecfs-we-write-to-the-essex-cfs-service-20-june-2014/ ME Association complaint], [https://www.meassociation.org.uk/2014/06/essex-cfs-service-apologise-for-letter-to-the-bmj-naive-of-authors-not-to-consider-wider-implications-20-june-2014/ Essex CFS Service apologises] *2015, [[MEAction| #MEAction]] - [https://www.meaction.net/2015/12/03/debunking-the-myth-of-the-militant-minority/ Debunking the myth of the militant minority] *2018, Somerset Live (UK) - [https://www.somersetlive.co.uk/news/somerset-news/bridgwater-woman-speaks-dealing-me-1543864 Bridgwater woman speaks of dealing with M.E. after GP tells her 'It’s not as if you are disabled or anything'] * 2018, [[MEAction| #MEAction]] - [https://www.meaction.net/2018/09/18/afflicted-open-letter-solidarity-petition/ Open letter demands removal of Netflix's "AFFLICTED"] :[https://docs.google.com/document/d/1DGtVMTkyzpVfXYar7oz99_xVjebkMeI6e-lYAWWAh4U/mobilebasic ME patients and other disabled people tweet their dismay at Netflix's Afflicted] : Individuals who were lied to and misrepresented by Netflix’s [[Afflicted]] include Jake, Pilar, [[Jamison Hill|Jamison]], Bekah, Jill and Janine :* 2018, Dr [[Keith Geraghty]] [https://www.twitter.com/keithgeraghty/status/968064492025405443 tweeted]: :* "I have written a paper with a colleague at Harvard on whether or not Militancy has been used by researchers to downplay the legitimate concerns of ME/CFS sufferers; {we have FOI case] - awaiting final acceptance - we tackle this important point/issue (hope to see paper out soon)" ==Prevalence== A study of 68 ME/CFS patients in the UK in 2001 found that more than half of patients reported that their doctor was either openly skeptical about their ME/CFS symptoms, or appeared disbelieving; similar experiences have been reported within disability assessments by clinicians at a specialist CFS/ME clinic in the UK.<ref name="Deale2001" /><ref name=":9" /> In 2019, a [[UK Parliament Commons Chamber debate 24th January 2019|UK parliament debate]] highlighted that the members of the medical profession did not fully recognize ME, which increased the stigma and the marginalization of people with ME.<ref name="hansardjan19" /> == Interviews and news articles == * 2019, [https://www.huffingtonpost.co.uk/entry/me-chronic-fatigue_uk_5ca38433e4b0c5dee18bbb33 ME affects four times more women than men Josie Richardson - Dismissing this Terrible Illness is Sexist] - Josie Richardson, Huffington Post ==Notable studies== *1982, Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome<ref>{{Cite journal | last = Ware | first = Norma C. | author-link = Norma Ware | date = Dec 1992 | title = Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome|url=https://anthrosource.onlinelibrary.wiley.com/doi/abs/10.1525/maq.1992.6.4.02a00030|journal=Medical Anthropology Quarterly|language=en|volume=6|issue=4|pages=347–361|doi=10.1525/maq.1992.6.4.02a00030|issn=0745-5194|quote=|via=}}</ref> [https://anthrosource.onlinelibrary.wiley.com/doi/abs/10.1525/maq.1992.6.4.02a00030 | (Abstract)] *1993, All in her mind! Stereotypic views and the [[Psychologization|psychologisation]] of women's illness<ref>{{Cite journal | journal = Health Psychology Update|url=https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7 | title = All in her mind! Stereotypic views and the psychologisation of women's illness | last = Goudsmit | first=Ellen M | last2 = | first2 = | date = 1993|publisher=|isbn=|editor-link=|volume=12|location=|pages=28-32|language=en|chapter=|quote= | author-link = Ellen Goudsmit|editor-last2=|editor-link2=}}</ref> [https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7 (Full text)] *1999, Stigma and Chronic Fatigue Syndrome<ref>{{Cite journal | last = Green | first = Judith | authorlink = Judith Green | last2 = Romei | first2 = Jennifer | author-link2 = Jennifer Romei | last3 = Natelson | first3=Benjamin H. | authorlink3 = Benjamin Natelson | date = Jan 1999 | title = Stigma and Chronic Fatigue Syndrome|url=https://www.tandfonline.com/doi/abs/10.1300/J092v05n02_04|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=5|issue=2 | pages = 63–75|doi=10.1300/j092v05n02_04|issn=1057-3321|quote=|via=}}</ref> [https://www.tandfonline.com/doi/abs/10.1300/J092v05n02_04 (Abstract)] *2001, Attitudes Regarding Chronic Fatigue Syndrome: The Importance of a Name<ref>{{Cite journal | last= Jason | first = Leonard A. | author-link = Leonard Jason | last2 = Taylor | first2 = Renée R. | authorlink2 = Renee Taylor | last3 = Stepanek | first3 = Zuzana | authorlink3 = Zuzana Stepanek | last4 = Plioplys | first4 = Sigita | authorlink4 = Sigita Plioplys | authorlink5 = | date = 2001-01-01 | title = Attitudes Regarding Chronic Fatigue Syndrome: The Importance of a Name|url=https://doi.org/10.1177/135910530100600105|journal=Journal of Health Psychology|language=en|volume=6|issue=1 | pages = 61–71|doi=10.1177/135910530100600105|issn=1359-1053|quote=|via=}}</ref> [http://journals.sagepub.com/doi/abs/10.1177/135910530100600105?journalCode=hpqa (Abstract)] *2001, Gender biases underlying the social construction of illness states: The case of chronic fatigue syndrome<ref>{{Cite journal | last = Richman | first = Judith A. | author-link = Judith Richman | last2 = Jason | first2 = Leonard A. | authorlink2 = Leonard Jason | date = May 2001 | title = Gender Biases Underlying the Social Construction of Illness States: The Case of Chronic Fatigue Syndrome|url=http://journals.sagepub.com/doi/10.1177/0011392101049003003|journal=Current Sociology|language=en|volume=49|issue=3|pages=15–29|doi=10.1177/0011392101049003003|issn=0011-3921|quote=|via=}}</ref> [http://journals.sagepub.com/doi/abs/10.1177/0011392101049003003 (Abstract)] *2001, Measuring Attributions About Chronic Fatigue Syndrome<ref>{{Cite journal | authorlink = Leonard Jason| first = Leonard A. | last= Jason | authorlink2 = Renee Taylor | first2 = Renée R. | last2 = Taylor | date = 2001 | doi=10.1300/J092v08n03_04 | title = Measuring Attributions About Chronic Fatigue Syndrome|journal=Journal of Chronic Fatigue Syndrome|volume=8|issue=3–4|pages=31-40|url=http://dx.doi.org/10.1300/J092v08n03_04}}</ref> [http://dx.doi.org/10.1300/J092v08n03_04 (Abstract)] *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. | authorlink2 = H Eisele | last3 = Taylor | first3=R.R. | authorlink3 = Renee Taylor | authorlink4 = | 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. | authorlink2 = 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)] *2002, [https://www.ncbi.nlm.nih.gov/pubmed/11837367 Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.]<ref name="asbring2002">{{Cite journal| issn = 1049-7323| volume = 12 | issue = 2| pages = 148–160| last1 = Asbring | first1 = Pia| authorlink1 = Pia Asbring | last2 = Närvänen | authorlink2 = Anna-Liisa Närvänen | first2 = Anna-Liisa | title = Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia| journal = Qualitative Health Research| date = Feb 2002 | pmid = 11837367}}</ref> *2004, Stigma and chronic fatigue syndrome: Surveying a name change<ref>{{Cite journal | last= Jason | first = L.A. | authorlink = Leonard Jason | last2 = Holbert | first2 =C. | last3 = Torres-Harding | authorlink3 = Susan Torres-Harding | first3 = S | last4 = Taylor | first4 = R.R. | authorlink4 = Renee Taylor | date = 2004 | title=Stigma and chronic fatigue syndrome: Surveying a name change. |journal=Journal of Disability Policy Studies|volume =14|pages=222-228|url=https://www.researchgate.net/publication/236996166_Stigma_and_chronic_fatigue_syndrome_Surveying_a_name_change}}</ref> [https://www.researchgate.net/publication/236996166_Stigma_and_chronic_fatigue_syndrome_Surveying_a_name_change (Abstract, full text downloadable)] * 2005, Can the social model explain all of the disability experience? Perspectives from people with chronic fatigue syndrome.<ref name="Taylor2005">{{Cite journal | last = Taylor | first = Renee R. | author-link = Renee Taylor | date = Sep 2005 | title = Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome|url=https://pubmed.ncbi.nlm.nih.gov/16268016/|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=59|issue=5|pages=497–506|doi=10.5014/ajot.59.5.497|issn=0272-9490|pmc=|pmid=16268016|access-date=|quote=|via=}}</ref> [https://pdfs.semanticscholar.org/5e0f/362c499a24facdb02804c91eaffddcf01e8e.pdf (Full text)] * 2006, Pediatric Chronic Fatigue Syndrome and Munchausen-By-Proxy: A Case Study<ref name="VanHoof2006" />[https://books.google.co.uk/books?id=MrcUN2k91IMC&oi=fnd&pg=PA45#v=onepage&q&f=false (Full text)] *2007, The Effectiveness of Early Educational Intervention in Improving Future Physicians' Attitudes Regarding [[chronic fatigue syndrome|CFS]]/[[Fibromyalgia|FM]]<ref>{{Cite journal | last = Lu | first = Tony V. | author-link = Tony Lu | last2 = Torres-Harding | first2 = Susan R. | authorlink2 = Susan Torres-Harding | last3 = Jason | first3 = Leonard A. | authorlink3 = Leonard Jason | authorlink4 = | authorlink5 = | date = Jan 2007 | title = The Effectiveness of Early Educational Intervention in Improving Future Physicians' Attitudes Regarding CFS/FM|url=https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_03|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=14|issue=2|pages=25–30|doi=10.1300/j092v14n02_03|issn=1057-3321|quote=|via=}}</ref> [https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_03 (Abstract)] *2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study<ref name="obstruction">{{Cite journal | last = Gilje | first = Ann Marit | authorlink = Ann Marit Gilje | last2 = Söderlund | first2 = Atle | authorlink2 = Atle Söderlund | last3 = Malterud | first3=Kirsti | authorlink3 = Kirsti Malterud | authorlink4 = | authorlink5 = | date = Oct 2008 | title = Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study|url=https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936|journal=[[Patient Education and Counseling]]|language=en|volume=73|issue=1|pages=36–41|doi=10.1016/j.pec.2008.04.001|quote=|via=}}</ref> [https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936 (Abstract)] *2016, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences]<ref>{{Cite journal | last = Mihelicova | first = Martina | authorlink = Martina Mihelicova | last2 = Siegel | first2 = Zachary | authorlink2 = Zachary Siegel | last3 = Evans | first3=Meredyth | authorlink3 = Meredyth Evans | last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown| last5 = Jason | first5 = Leonard | authorlink5 = Leonard Jason | date = Dec 2016 | title = Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/|journal=Journal of health psychology|volume=21|issue=12|pages=2824–2837|doi=10.1177/1359105315587137|issn=1359-1053|pmc=4675701|pmid=26063209|quote=|via=}}</ref> *2016, Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice<ref>{{Cite journal | last = Nicholson | first = Laura | authorlink = Laura Nicholson | last2 = Brown | first2 = Abigail | authorlink2 = Abigail Brown | last3 = Jason | first3 = Leonard | author-link3 = Leonard Jason | last4 = Ohanian | first4 = Diana | authorlink4 = Diana Ohanian| last5 = O'Connor | first5 = Kelly | authorlink5 = Kelly O'Connor | date = 2016-02-18 | title = Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice|url=https://www.researchgate.net/publication/295001642_Educational_Priorities_for_Healthcare_Providers_and_Name_Suggestions_for_Chronic_Fatigue_Syndrome_Including_the_Patient_Voice|journal=Clinical Research: Open Access ( ISSN 2469-6714 )|volume=2|issue=|pages=|doi=10.16966/2469-6714.112|quote=|via=}}</ref> [https://www.researchgate.net/publication/295001642_Educational_Priorities_for_Healthcare_Providers_and_Name_Suggestions_for_Chronic_Fatigue_Syndrome_Including_the_Patient_Voice (Full Text)] * 2017, Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis<ref>{{Cite journal | last = Nehrke | first = Pamela I | author-link = Pamela Nehrke | last2 = Fox | first2 = Pamela A | authorlink2 = Pamela Fox | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | authorlink4 = | date = 2017 | title=Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5898812/|journal=Neurology (E-Cronicon)|volume=7|issue=4|pages=172–178|pmc=5898812|pmid=29662969|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5898812/ (Abstract)] * 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome<ref name=":4">{{Cite journal | last = Blease | first = Charlotte | author-link = Charlotte Blease | last2 = Carel | first2 = Havi | authorlink2 = Havi Carel | last3 = Geraghty | first3 = Keith | authorlink3 = Keith Geraghty | authorlink4 = | authorlink5 = | date = 2017-08-01 | title = Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome|url=https://jme.bmj.com/content/43/8/549|journal=Journal of Medical Ethics|language=en|volume=43|issue=8|pages=549–557|doi=10.1136/medethics-2016-103691|issn=0306-6800|pmid=27920164|quote=|via=}}</ref> [https://jme.bmj.com/content/43/8/549| (Full text)] * 2018, Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy.<ref>{{Cite journal | last = Blease | first = Charlotte | last2 = Geraghty | first2 = Keith J. | date = Sep 2018 | title = Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy|url=http://docs.wixstatic.com/ugd/510dea_e4ef70833c2a4cb8926e01c1f42b97a1.pdf|journal=Journal of Bioethical Inquiry|volume=15|issue=3|pages=393–401|doi=10.1007/s11673-018-9866-5|issn=1176-7529|pmid=29971693|via=}}</ref> [http://docs.wixstatic.com/ugd/510dea_e4ef70833c2a4cb8926e01c1f42b97a1.pdf (Abstract)] * 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter<ref name=":8">{{Cite journal | last = Geraghty | first = Keith J. | author-link = Keith Geraghty | last2 = Blease | first2 = Charlotte | authorlink2 = Charlotte Blease | date = 2018-06-21 | title = Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter|url=https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149|journal=Disability and Rehabilitation|language=en|volume=41|issue=25|pages=3092-3102|doi=10.1080/09638288.2018.1481149|issn=0963-8288|quote=|via=}}</ref> [https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149 (Abstract)] *2018, Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome<ref name=":1">{{Cite journal | last = McManimen | first = Stephanie L. | author-link = Stephanie McManimen | last2 = McClellan | first2 = Damani | authorlink2 = Damani McClellan | last3 = Stoothoff | first3 = Jamie | authorlink3 = Jamie Stoothoff | last4 = Jason | first4 = Leonard A. | authorlink4 = Leonard Jason | authorlink5 = | date = 2018-05-04 | title = Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome|url=https://onlinelibrary.wiley.com/doi/abs/10.1002/jcop.21984|journal=Journal of Community Psychology|language=en|volume=46|issue=8 | pages = 959–971|doi=10.1002/jcop.21984|issn=0090-4392|quote=|via=}}</ref> [https://onlinelibrary.wiley.com/doi/abs/10.1002/jcop.21984 (Abstract)] *2018, A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013<ref name=":2">{{Cite journal | last = Siegel | first = Zachary A. | author-link = Zachary Siegel | last2 = Brown | first2 = Abigail | authorlink2 = Abigail Brown | last3 = Devendorf | first3 = Andrew | author-link3 = Andrew Devendorf | last4 = Collier | first4 = Johanna | authorlink4 = Johanna Collier | last5 = Jason | first5 = Leonard A. | authorlink5 = Leonard Jason | date = Mar 2018 | title = A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013|url=https://www.ncbi.nlm.nih.gov/pubmed/28403636|journal=Chronic Illness|volume=14|issue=1|pages=3–12|doi=10.1177/1742395317703175|issn=1745-9206|pmid=28403636|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pubmed/28403636 (Abstract)] *2018, Stigma in Myalgic Encephalomyelitis and its association with functioning<ref name=":0">{{Cite journal | last = Baken | first = Don M. | author-link = Don Baken | last2 = Harvey | first2 = Shane T. | authorlink2 = Shane Harvey | last3 = Bimler | first3=David L. | authorlink3 = David Bimler | last4 = Ross | first4 = Kirsty J. | authorlink4 = Kirsty Ross | authorlink5 = | date = 2018-01-02 | title = Stigma in Myalgic Encephalomyelitis and its association with functioning | url =https://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1419553|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=6|issue=1|pages=30–40|doi=10.1080/21641846.2018.1419553|issn=2164-1846|quote=|via=}}</ref> [https://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1419553 (Abstract)] *2019, Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers<ref name="Murray2019">{{Cite journal | last = Murray | first = Rebecca | authorlink = Rebecca Murray | last2 = Day | first2 = Katy | authorlink2 = Katy Day | last3 = Tobbell | first3 = Jane | authorlink3 = Jane Tobbell | date = Apr 15, 2019 | title = Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers|url=https://doi.org/10.1080/14680777.2019.1595694|journal=Feminist Media Studies|volume=|issue=|pages=1–16|doi=10.1080/14680777.2019.1595694|issn=1468-0777|quote=|via=}}</ref> [https://doi.org/10.1080/14680777.2019.1595694 (Abstract)] *2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade<ref name="Friedberg2019">{{Cite journal | last = Friedberg | first = Fred | authorlink = Fred Friedberg | date = 2020-01-02 | title = Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade|url=https://doi.org/10.1080/21641846.2020.1718292|journal = Fatigue: Biomedicine, Health & Behavior |volume=8|issue=1|pages=24–31|doi=10.1080/21641846.2020.1718292|issn=2164-1846|pmc=|pmid=|access-date=|quote=|via=}}</ref> [https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1718292 (Abstract)] *2021, Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected<ref name="Fennell2021">{{Cite journal | title = Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected | date = 2021-05-09|url=https://pubmed.ncbi.nlm.nih.gov/34065069/|journal=Healthcare (Basel, Switzerland)|volume=9|issue=5|pages=553 | last = Fennell | first = Patricia A. | author-link = Patricia Fennell | last2 = Dorr | first2 = Nancy | authorlink2 = | last3 = George | first3 = Shane S. | authorlink3 = |doi=10.3390/healthcare9050553|pmc=8150911|pmid=34065069|access-date=|issn=2227-9032|quote=|via=}}</ref> [https://www.mdpi.com/1101812 (Full text)] ==See also== * [[Ethical issues]] * [[Biopsychosocial model]] *[[Munchausen syndrome by proxy]] * [[Charlotte Blease]] * [[Mary Dimmock]] * [[Keith Geraghty]] * [[Leonard Jason]] * [[Individual quotes|Quotes about ME/CFS]] * [[Unrest|''Unrest'']] (movie) ==Learn more== * 2015, [http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis]<ref name=":3">{{Cite web|url=http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf | title = THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis | last = Dimmock | first = Mary | authorlink=Mary Dimmock | last2 = Lazell-Fairman | first2 = Matthew | authorlink2 = Matthew Lazell-Fairman | date = Dec 2015 | website = |archive-url=|archive-date=|access-date=Nov 5, 2018}}</ref> ==References== {{reflist}} [[Category:Ethics]] [[Category:Psychology]] [[Category:Psychological paradigm]]
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