Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
Contested illness
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
{{NeedsImage}} '''Contested illnesses''' or contested disorders have been described as those in which "different 'experts' have different views as to the causes, and they are often considered [[Medically unexplained physical symptoms|medically unexplained]]" (Arroll, 2014).<ref name="Arroll2014">{{Cite book | title = Invisible Illness: Coping with misunderstood conditions| pages=|isbn=978-1-84709-306-6|edition=|volume=|language=en| title-link = | url = https://books.google.co.uk/books?id=1oReBAAAQBAJ&lpg=PT19&ots=0hTOdouShM&pg=PT20#v=onepage&q&f=true|access-date= | date = 2014-09-18| publisher = SPCK | last = Arroll|first = Megan A. | authorlink = Megan Arroll|veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=}}</ref> =="Real" illnesses == Some clinicians may not accept that certain illnesses, particularly invisible illnesses are "real", or may take the approach that the symptoms are real but are not caused by any particular illness or disease―or even that they are a form of [[health anxiety]].<ref name="Hauser2018" /><ref name="Sisk2007">{{Cite journal|first = Jennifer | last = Sisk|journal=Social Work Today | title = Invisible illness — What You Can’t See Does Hurt Her | date = 2007 | volume=7 | issue = 6| page=18 | url = https://www.socialworktoday.com/archive/novdec2007p18.shtml}}</ref><br> {{Quote box|text=Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM and CFS, she says. <ref name="Sisk2007"/>|source=Invisible illness — What You Can’t See Does Hurt Her (2007) | title = Invisible illness in society}} Some patients with contested illnesses have been labeled [[hysteria|"hysterical"]] or being treated as if their illness was [[psychosomatic illness|psychosomatic]],<ref name="Goudsmit1991" /> even when physically seriously ill or when there are clear abnormal medical findings,<ref name="Spandler2017" /> for example [[Merryn Crofts]] and [[Sophie Mirza]], who both died of [[myalgic encephalomyelitis]].<ref name="Vindicatedindeath">{{Cite news |url =https://www.bbc.co.uk/news/health-44969741 | title = 'Vindication' for woman who wanted ME on death certificate | first = Jim | last = Taylor| publisher = BBC Radio 5 Live | date = July 27, 2018}}</ref><ref name="obstruction" /> ==Psychosocial theories == Historically, a number of different illnesses have been contested illnesses at some point, and as a result were treated as [[psychosomatic illness|psychosomatic illnesses]] or resulted in the inappropriate blaming of particular people - often women - for causing them, for example [[Parkinson's disease]] was explained as [[psychosomatic illness|psychosomatic]], schizophrenia was supposed to be caused by emotionally distant mothers, and peptic stomach ulcers were said to be caused by [[stress]] before the discovery of [[Helicobacter pylori|H. pylori]] bacteria.<ref name="Arroll2014" /><ref name="English2000" /> ==ME/CFS== The treatment of [[ME/CFS]] has been hotly contested for many years, with the controversial use of [[cognitive behavioral therapy]], a form of psychotherapy, and [[graded exercise therapy]], a behavioral treatment becoming the dominant approaches in the early 21st century.<ref name="Spandler2017" /><ref name="obstruction" /> From around 2016, a paradigm shift began, with cognitive and behavioral treatments largely abandoned, and symptomatic treatment and greater acceptance of [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|medical abnormalities]] in patients with ME/CFS.<ref name="Smith2016">{{cite journal | vauthors = Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M | title = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219| journal = Evidence Report/Technology Assessment | date = December 2014 | pmid = 30313001 | doi = 10.23970/AHRQEPCERTA219 | url = https://www.ncbi.nlm.nih.gov/books/NBK379582/ | publisher = Agency for Healthcare Research and Quality (US) | at = Addendum| quote= This addendum has delineated differences in treatment effectiveness and harms according to case definitions, highlighting studies that used the Oxford (Sharpe, 1991) case definition and how these studies impacted our conclusions. Additionally, results of studies evaluating CBT have been considered independently from other counseling and behavioral therapies. Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion. Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS.}}</ref><ref name="niceng206">{{Cite web | url = https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last = NICE Guideline Development Group|first = | authorlink = | publisher = [[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> ==Fibromyalgia == [[Fibromyalgia]] remains a contested illness, although since the approval of some medication such as [[Lyrica]], there has been greater acceptance of the illness as a physical illness with increased support for the use of medication.<ref name="Hauser2018" /><ref name="Barker2016" /> ==Notable articles== *1991, The Psychologisation of Illness <ref name="Goudsmit1991">{{Cite journal | last = Goudsmit | first = EM | authorlink = Ellen Goudsmit | last2 = Gadd | first2 = R | authorlink2 = | date = 1991 | title = All in the mind? The Psychologisation of Illness |url =https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7|journal=The Psychologist|volume=4 | issue = | pages = 449-453|doi=|pmc=|pmid=|access-date=|quote=is the overemphasls and exaggeration of the role of psychological factors in illnesses which are generally considered to have a physiological and/or biochemical aetiology|via=}}</ref> [https://books.google.co.uk/books?hl=en&lr=&id=E1afUMVG0VEC&oi=fnd&pg=PA7 (Full text)] * 2000, Functional somatic syndromes<ref name="English2000">{{Cite journal | last = English|first = T. L. | authorlink = | date = Feb 15, 2000 | title = Functional somatic syndromes |url =https://www.ncbi.nlm.nih.gov/pubmed/10681297|journal=Annals of Internal Medicine|volume=132 | issue = 4 | pages = 329|issn=0003-4819|pmid=10681297|quote=Lupus, multiple sclerosis, AIDS, and Lyme disease suffered similar fates before “tissue evidence” was available. Patients were belittled by armchair speculators masquerading as scientists. Who among us believes this was helpful? A simple “I don’t know” would have been better than specious speculation.<br >The authors confuse absence of evidence with evidence of absence. They are not the same. Absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience; for example, in 1980, there was no clear evidence that AIDS was viral—blood products were considered “safe.”|via=|doi=|pmc=}}</ref> *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 = | last2 = Söderlund | first2 = Atle | authorlink2 = | last3 = Malterud | first3 = Kirsti | 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=|pmc=|pmid=}}</ref> [https://linkinghub.elsevier.com/retrieve/pii/S0738399108001936 (Abstract)] *2016, Listening to Lyrica: contested illnesses and pharmaceutical determinism<ref name="Barker2016">{{Cite journal | last = Barker | first = Kristin K. | date = 2011-09-01 | title = Listening to Lyrica: contested illnesses and pharmaceutical determinism | url = https://www.sciencedirect.com/science/article/pii/S0277953611004424|journal=Social Science & Medicine|series=Sociology of Diagnosis|language=en|volume=73 | issue = 6 | pages = 833–842|doi=10.1016/j.socscimed.2011.05.055|issn=0277-9536}}</ref> [https://doi.org/10.1016/j.socscimed.2011.05.055 (Full text)] *2017, Contesting the psychiatric framing of ME/CFS<ref name="Spandler2017">{{Cite journal | last = Spandler | first = Helen | authorlink = Helen Spandler | last2 = Allen | first2 = Meg | authorlink2 = | date = 2017-08-16 | title = Contesting the psychiatric framing of ME/CFS | url = https://www.researchgate.net/profile/Helen_Spandler/publication/319157873_Contesting_the_psychiatric_framing_of_MECFS/links/599b082545851574f4ac5ba0/Contesting-the-psychiatric-framing-of-ME-CFS.pdf | journal=Social Theory & Health|language=en|volume=16 | issue = 2 | pages = 127–141|doi=10.1057/s41285-017-0047-0|issn=1477-8211|quote=|via=}}</ref> [https://www.researchgate.net/profile/Helen_Spandler/publication/319157873_Contesting_the_psychiatric_framing_of_MECFS/links/599b082545851574f4ac5ba0/Contesting-the-psychiatric-framing-of-ME-CFS.pdf (Full text)] *2018, Facts and myths pertaining to fibromyalgia<ref name="Hauser2018">{{Cite journal | last = Häuser | first = Winfried | authorlink = Winifred Häuser | last2 = Fitzcharles | first2 = Mary-Ann | authorlink2 = | date = Mar 2018 | title = Facts and myths pertaining to fibromyalgia | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016048/|journal=Dialogues in Clinical Neuroscience|volume=20 | issue = 1 | pages = 53–62|doi=|issn=1294-8322|pmc=6016048|pmid=29946212|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016048/ (Full text)] *2021, [https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ How to Report with Accuracy and Sensitivity on Contested Illnesses] - Open Notebook ==See also == * [[Invisible illness]] * [[Stigma and discrimination]] * [[Psychologization]] * [[Medically unexplained physical symptoms]] ==Learn more == * [http://margaretwilliams.me/2006/model-of-the-myth.pdf The Model of the Myth] - Margaret Williams *[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016048/ Facts and myths pertaining to fibromyalgia] - Wilfred Häuser ==References == {{Reflist}} [[Category:Diagnoses]]
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Templates used on this page:
Template:Cite book
(
edit
)
Template:Cite journal
(
edit
)
Template:Cite news
(
edit
)
Template:Cite web
(
edit
)
Template:Main other
(
edit
)
Template:NeedsImage
(
edit
)
Template:Quote box
(
edit
)
Template:Reflist
(
edit
)
Module:Check for unknown parameters
(
edit
)
Module:Citation/CS1
(
edit
)
Module:Citation/CS1/COinS
(
edit
)
Module:Citation/CS1/Configuration
(
edit
)
Module:Citation/CS1/Date validation
(
edit
)
Module:Citation/CS1/Identifiers
(
edit
)
Module:Citation/CS1/Utilities
(
edit
)
Module:Citation/CS1/Whitelist
(
edit
)
Module:No globals
(
edit
)
This page is a member of a hidden category:
Category:Articles that need an image or photo
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs