Contested illness
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" (Arroll, 2014).[1]
"Real" illnesses[edit | edit source]
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.[2][3]
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. [3]
Some patients with contested illnesses have been labeled "hysterical" or being treated as if their illness was psychosomatic,[4] even when physically seriously ill or when there are clear abnormal medical findings,[5] for example Merryn Crofts and Sophie Mirza, who both died of myalgic encephalomyelitis.[6][7]
Psychosocial theories[edit | edit source]
Historically, a number of different illnesses have been contested illnesses at some point, and as a result were treated as 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, 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 H. pylori bacteria.[1][8]
ME/CFS[edit | edit source]
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.[5][7]
From around 2016, a paradigm shift began, with cognitive and behavioral treatments largely abandoned, and symptomatic treatment and greater acceptance of medical abnormalities in patients with ME/CFS.[9][10]
Fibromyalgia[edit | edit source]
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.[2][11]
Notable articles[edit | edit source]
- 1991, The Psychologisation of Illness [4] (Full text)
- 2000, Functional somatic syndromes[8]
- 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study[7] (Abstract)
- 2016, Listening to Lyrica: contested illnesses and pharmaceutical determinism[11] (Full text)
- 2017, Contesting the psychiatric framing of ME/CFS[5] (Full text)
- 2018, Facts and myths pertaining to fibromyalgia[2] - (Full text)
- 2021, How to Report with Accuracy and Sensitivity on Contested Illnesses - Open Notebook
See also[edit | edit source]
- Invisible illness
- Stigma and discrimination
- Psychologization
- Medically unexplained physical symptoms
Learn more[edit | edit source]
- The Model of the Myth - Margaret Williams
- Facts and myths pertaining to fibromyalgia - Wilfred Häuser
References[edit | edit source]
- ↑ 1.0 1.1 Arroll, Megan A. (September 18, 2014). Invisible Illness: Coping with misunderstood conditions. SPCK. ISBN 978-1-84709-306-6.
- ↑ 2.0 2.1 2.2 Häuser, Winfried; Fitzcharles, Mary-Ann (March 2018). "Facts and myths pertaining to fibromyalgia". Dialogues in Clinical Neuroscience. 20 (1): 53–62. ISSN 1294-8322. PMC 6016048. PMID 29946212.
- ↑ 3.0 3.1 Sisk, Jennifer (2007). "Invisible illness — What You Can't See Does Hurt Her". Social Work Today. 7 (6): 18.
- ↑ 4.0 4.1 Goudsmit, EM; Gadd, R (1991). "All in the mind? The Psychologisation of Illness". The Psychologist. 4: 449–453.
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
- ↑ 5.0 5.1 5.2 Spandler, Helen; Allen, Meg (August 16, 2017). "Contesting the psychiatric framing of ME/CFS" (PDF). Social Theory & Health. 16 (2): 127–141. doi:10.1057/s41285-017-0047-0. ISSN 1477-8211.
- ↑ Taylor, Jim (July 27, 2018). "'Vindication' for woman who wanted ME on death certificate". BBC Radio 5 Live.
- ↑ 7.0 7.1 7.2 Gilje, Ann Marit; Söderlund, Atle; Malterud, Kirsti (October 2008). "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study". Patient Education and Counseling. 73 (1): 36–41. doi:10.1016/j.pec.2008.04.001.
- ↑ 8.0 8.1 English, T. L. (February 15, 2000). "Functional somatic syndromes". Annals of Internal Medicine. 132 (4): 329. ISSN 0003-4819. PMID 10681297.
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.
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.” - ↑ Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (December 2014). "Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219". Evidence Report/Technology Assessment. Agency for Healthcare Research and Quality (US). Addendum. doi:10.23970/AHRQEPCERTA219. PMID 30313001.
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.
- ↑ NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
- ↑ 11.0 11.1 Barker, Kristin K. (September 1, 2011). "Listening to Lyrica: contested illnesses and pharmaceutical determinism". Social Science & Medicine. Sociology of Diagnosis. 73 (6): 833–842. doi:10.1016/j.socscimed.2011.05.055. ISSN 0277-9536.
