Stigma and discrimination

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
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."[1] People with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often described feeling stigmatized and discriminated against.[2][3][4][5]


“ 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)[6]


...believing ME/CFS is a condition that can be cured by attitude and 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... — Hilda Bastian, Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much[7]

The Yuppie flu label[edit | edit source]

ME was dismissed as "yuppie flu" and even "shirker syndrome" in the 1980s and described as a reaction to the stresses of modern life.[8] Under the label yuppie flu, ME was regarded as only affecting one group in society - young to middle-aged professionals.[9]

Stigma from the media[edit | edit source]

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".[10] 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.[11]

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.[12] A BBC report, believed to be heavily influenced by the biased Science Media Centre (SMC), "overstated" and made inaccurate claims that the Dutch FITNET trial could cure "two-thirds" of [British children with 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 UK.[12]

A number of charities including Invest in ME Research and The ME Association have filed complaints or raised objections, in addition to individual patients.[13][10] 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 mental health problems.

Stigma from the family, friends and the public[edit | edit source]

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.[14][15]

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.[15]

Stigma from health professionals[edit | edit source]

A number of 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.[16][17][18] Similar experiences have been reported within disability assessments, and by clinicians at a specialist CFS/ME clinic in the UK.[19][20] In 2019, a 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.[6]

ME patients have been stereotyped in many ways, including being accused of having negative attitudes towards mental illness and being "anti-psychiatry", however Wood & Wessely (1999) showed that attitudes towards mental illness are no different from those of other patient groups, for example rheumatoid arthritis patients.[21]

Researchers with ME/CFS: stigma from academic colleagues[edit | edit source]

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.[5][22] 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.[23] 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."[23]

Discrimination[edit | edit source]

Blease and Geraghty (2018) found that "medical authorities" used "widespread negative stereotyping of patients" and acted to marginalize and exclude patient voices, which created "epistemic injustice."[24] 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[24]

Effects of stigma[edit | edit source]

Stigma has resulted in patients being treated as

  • lazy or work shy, resulting in denial of disability benefits and rejection from society and family[22][19]
  • hypochondriacs[22][17]
  • not ill, or only having trivial symptoms,[18] resulting in denying basic medical treatment and tests,[17] and denial of funding for medical research
  • undeserving of medical care[5][22]
  • mentally ill, resulting in denial of medical care and disability aids, and limited / reduced disability or sickness payments[25]
  • dangerous, threatening and mentally unstable[24]
  • 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[26][27][26][28]
  • 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[29]

Examples of stigma and discrimination of ME/CFS[edit | edit source]

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)
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 Wessely helped design the PACE trial and was a PACE trial center manager for several years, and still researchs ME/CFS
Professor 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."
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."
ME Association complaint, Press Complaints Commission response
By Anthony Collings and David Newton, Essex CFS Service, UK.
ME Association complaint, Essex CFS Service apologises
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, Bekah, Jill and Janine
  • 2018, Dr Keith Geraghty 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[edit | edit source]

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.[16][20]

In 2019, a 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.[6]

Interviews and news articles[edit | edit source]

Notable studies[edit | edit source]

  • 1982, Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome[30] (Abstract)
  • 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences[41]
  • 2016, Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice[42] (Full Text)
  • 2017, Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis[43] (Abstract)
  • 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome[24] (Full text)
  • 2018, Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy.[44] (Abstract)
  • 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter[25] (Abstract)
  • 2018, Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome[3] (Abstract)
  • 2018, A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013[4] (Abstract)
  • 2018, Stigma in Myalgic Encephalomyelitis and its association with functioning[2] (Abstract)
  • 2019, Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers[11] (Abstract)
  • 2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade[45] (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[46] (Full text)

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ Goffman, E. (1983). Stigma: notes on the management of spoiled Identity. New York: Simon and Schuster. p. 11.
  2. ↑ 2.0 2.1 Baken, Don M.; Harvey, Shane T.; Bimler, David L.; Ross, Kirsty J. (January 2, 2018). "Stigma in Myalgic Encephalomyelitis and its association with functioning". Fatigue: Biomedicine, Health & Behavior. 6 (1): 30–40. doi:10.1080/21641846.2018.1419553. ISSN 2164-1846.
  3. ↑ 3.0 3.1 McManimen, Stephanie L.; McClellan, Damani; Stoothoff, Jamie; Jason, Leonard A. (May 4, 2018). "Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome". Journal of Community Psychology. 46 (8): 959–971. doi:10.1002/jcop.21984. ISSN 0090-4392.
  4. ↑ 4.0 4.1 Siegel, Zachary A.; Brown, Abigail; Devendorf, Andrew; Collier, Johanna; Jason, Leonard A. (March 2018). "A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013". Chronic Illness. 14 (1): 3–12. doi:10.1177/1742395317703175. ISSN 1745-9206. PMID 28403636.
  5. ↑ 5.0 5.1 5.2 5.3 Dimmock, Mary; Lazell-Fairman, Matthew (December 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved November 5, 2018.
  6. ↑ 6.0 6.1 6.2 Hansard | UK Parliament (January 24, 2019). "Appropriate ME Treatment | 24 January 2019 Volume 653". hansard.parliament.uk. Retrieved January 25, 2019.
  7. ↑ Bastian, Hilda (February 8, 2019). "Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much". PlosOne. Retrieved March 3, 2019.
  8. ↑ Tuller, David (2007). "Chronic Fatigue no longer seen as Yuppie Flu" (PDF). New York Times. Retrieved December 30, 2018.
  9. ↑ Dowsett, Elizabeth G. (January 1992). P D Welsby. "Conversation piece. Interview by P. D. Welsby". Postgraduate Medical Journal. 68 (795): 63–65. ISSN 0032-5473. PMC 2399326. PMID 1561197.
  10. ↑ 10.0 10.1 BBC News Online (July 29, 2011). ""Torrent of abuse" hindering ME research | Today programme | BBC Radio 4" (PDF). Retrieved March 2, 2019.
  11. ↑ 11.0 11.1 Murray, Rebecca; Day, Katy; Tobbell, Jane (April 15, 2019). "Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers". Feminist Media Studies: 1–16. doi:10.1080/14680777.2019.1595694. ISSN 1468-0777.
  12. ↑ 12.0 12.1 BBC Trust (March 2017). "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" (PDF). Retrieved March 2, 2019.
  13. ↑ Invest in ME Research (January 2015). "INVEST IN ME RESPONSE to BBC ARTICLE". Invest in ME Research. Retrieved March 2, 2019.
  14. ↑ BBC Radio 4 (2007). "Case notes: Programme number 10 - ME" (Transcript). Archived from the original on December 21, 2007.
  15. ↑ 15.0 15.1 Richardson, Josie (April 4, 2019). "ME Affects Four Times More Women Than Men – Dismissing This Terrifying Illness Is Sexist". Huffington Post. Retrieved April 10, 2019.
  16. ↑ 16.0 16.1 16.2 Deale, A.; Wessely, S. (June 2001). "Patients' perceptions of medical care in chronic fatigue syndrome". Social Science & Medicine (1982). 52 (12): 1859–1864. ISSN 0277-9536. PMID 11352411.
  17. ↑ 17.0 17.1 17.2 Geraghty, Keith; Esmail, Aneez (August 1, 2016). "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?". British Journal of General Practice. 66 (649): 437-438. doi:10.3399/bjgp16X686473.
  18. ↑ 18.0 18.1 18.2 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.
  19. ↑ 19.0 19.1 Forward-ME (February 2011). "Countess of Mar's 'Forward ME' Group – minutes of meeting, 26 January 2011". ME Association. Retrieved March 4, 2019.
  20. ↑ 20.0 20.1 Collings, Anthony D; Newton, David (June 18, 2014). "Is Chronic Fatigue Syndrome a meme?". The BMJ. ISSN 0959-8138.
  21. ↑ Wood, Barbara; Wessely, Simon (October 1999). "Personality and social attitudes in chronic fatigue syndrome". Journal of Psychosomatic Research. 47 (4): 385–397. doi:10.1016/S0022-3999(99)00025-2. 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.
  22. ↑ 22.0 22.1 22.2 22.3 Maes, Michael; Mihaylova, Ivana; Bosmans, Eugene (August 2007). "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" (PDF). Neuro Endocrinology Letters. 28 (4): 456–462. ISSN 0172-780X. PMID 17693979. 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.
    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.
    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].
  23. ↑ 23.0 23.1 Friedman, Kenneth. "Elephants in the room" (PDF). Retrieved March 4, 2019.
  24. ↑ 24.0 24.1 24.2 24.3 Blease, Charlotte; Carel, Havi; Geraghty, Keith (August 1, 2017). "Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome". Journal of Medical Ethics. 43 (8): 549–557. doi:10.1136/medethics-2016-103691. ISSN 0306-6800. PMID 27920164.
  25. ↑ 25.0 25.1 Geraghty, Keith J.; Blease, Charlotte (June 21, 2018). "Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter". Disability and Rehabilitation. 41 (25): 3092–3102. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288.
  26. ↑ 26.0 26.1 Colby, Jane (2014). "False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)" (PDF). Tymes Trust.
  27. ↑ BBC news (November 8, 1999). "Panorama | Sick and Tired". BBC News. Retrieved February 12, 2019.
  28. ↑ 28.0 28.1 Van Hoof, E.; De Becker, P.; De Meirleir, K. (January 2006). "Pediatric Chronic Fatigue Syndrome and Munchausen-By-Proxy: A Case Study". Journal of Chronic Fatigue Syndrome. 13 (2–3): 45–53. doi:10.1300/J092v13n02_02. ISSN 1057-3321.
  29. ↑ Invest in ME Research (2006). "The Elephant in the Room - The General Medical Council - Dr Nigel Speight". Invest in ME Research. Retrieved February 15, 2019. 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.
  30. ↑ Ware, Norma C. (December 1992). "Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome". Medical Anthropology Quarterly. 6 (4): 347–361. doi:10.1525/maq.1992.6.4.02a00030. ISSN 0745-5194.
  31. ↑ Goudsmit, Ellen M (1993). "All in her mind! Stereotypic views and the psychologisation of women's illness". Health Psychology Update. 12: 28–32.
  32. ↑ Green, Judith; Romei, Jennifer; Natelson, Benjamin H. (January 1999). "Stigma and Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 5 (2): 63–75. doi:10.1300/j092v05n02_04. ISSN 1057-3321.
  33. ↑ Jason, Leonard A.; Taylor, Renée R.; Stepanek, Zuzana; Plioplys, Sigita (January 1, 2001). "Attitudes Regarding Chronic Fatigue Syndrome: The Importance of a Name". Journal of Health Psychology. 6 (1): 61–71. doi:10.1177/135910530100600105. ISSN 1359-1053.
  34. ↑ Richman, Judith A.; Jason, Leonard A. (May 2001). "Gender Biases Underlying the Social Construction of Illness States: The Case of Chronic Fatigue Syndrome". Current Sociology. 49 (3): 15–29. doi:10.1177/0011392101049003003. ISSN 0011-3921.
  35. ↑ Jason, Leonard A.; Taylor, Renée R. (2001). "Measuring Attributions About Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 8 (3–4): 31–40. doi:10.1300/J092v08n03_04.
  36. ↑ Jason, L.A.; Eisele, H.; Taylor, R.R. (December 2001). "Assessing attitudes toward new names for chronic fatigue syndrome". Evaluation & the Health Professions. 24 (4): 424–435. doi:10.1177/01632780122034993. ISSN 0163-2787. PMID 11817200.
  37. ↑ Asbring, Pia; Närvänen, Anna-Liisa (February 2002). "Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia". Qualitative Health Research. 12 (2): 148–160. ISSN 1049-7323. PMID 11837367.
  38. ↑ Jason, L.A.; Holbert, C.; Torres-Harding, S; Taylor, R.R. (2004). "Stigma and chronic fatigue syndrome: Surveying a name change". Journal of Disability Policy Studies. 14: 222–228.
  39. ↑ Taylor, Renee R. (September 2005). "Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome". The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association. 59 (5): 497–506. doi:10.5014/ajot.59.5.497. ISSN 0272-9490. PMID 16268016.
  40. ↑ Lu, Tony V.; Torres-Harding, Susan R.; Jason, Leonard A. (January 2007). "The Effectiveness of Early Educational Intervention in Improving Future Physicians' Attitudes Regarding CFS/FM". Journal of Chronic Fatigue Syndrome. 14 (2): 25–30. doi:10.1300/j092v14n02_03. ISSN 1057-3321.
  41. ↑ Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (December 2016). "Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences". Journal of health psychology. 21 (12): 2824–2837. doi:10.1177/1359105315587137. ISSN 1359-1053. PMC 4675701. PMID 26063209.
  42. ↑ Nicholson, Laura; Brown, Abigail; Jason, Leonard; Ohanian, Diana; O'Connor, Kelly (February 18, 2016). "Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice". Clinical Research: Open Access ( ISSN 2469-6714 ). 2. doi:10.16966/2469-6714.112.
  43. ↑ Nehrke, Pamela I; Fox, Pamela A; Jason, Leonard A (2017). "Research Volunteers' Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis". Neurology (E-Cronicon). 7 (4): 172–178. PMC 5898812. PMID 29662969.
  44. ↑ Blease, Charlotte; Geraghty, Keith J. (September 2018). "Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy" (PDF). Journal of Bioethical Inquiry. 15 (3): 393–401. doi:10.1007/s11673-018-9866-5. ISSN 1176-7529. PMID 29971693.
  45. ↑ Friedberg, Fred (January 2, 2020). "Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade". Fatigue: Biomedicine, Health & Behavior. 8 (1): 24–31. doi:10.1080/21641846.2020.1718292. ISSN 2164-1846.
  46. ↑ Fennell, Patricia A.; Dorr, Nancy; George, Shane S. (May 9, 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". Healthcare (Basel, Switzerland). 9 (5): 553. doi:10.3390/healthcare9050553. ISSN 2227-9032. PMC 8150911. PMID 34065069.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

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.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

Thought processes, including attention, reasoning, and memory.

cognition Thought processes, including attention, reasoning, and memory.

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

Bias in research is "a systematic deviation of an observation from the true clinical state".[1] (Learn more: me-pedia.org)

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

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.

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

See ME/CFS.

See biopsychosocial model.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

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.

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.

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.

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.

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.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

chronic illness any long-term illness, regardless of the severity. Chronic illnesses are typically incurable, requiring long-term management.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

cognition Thought processes, including attention, reasoning, and memory.

The word "membrane" can have different meanings in different fields of biology. In cell biology, a membrane is a layer of molecules that surround its contents. Examples of cell-biology membranes include the "cell membrane" that surrounds a cell, the "mitochondrial membranes" that form the outer layers of mitochondria, and the "viral envelope" that surrounds enveloped viruses. In anatomy or tissue biology, a membrane is a barrier formed by a layer of cells. Examples of anatomical membranes include the pleural membranes that surrounds the lungs, the pericardium which surrounds the heart, and some of the layers within the blood-brain barrier.

membrane The word "membrane" can have different meanings in different fields of biology. In cell biology, a membrane is a layer of molecules that surround its contents. Examples of cell-biology membranes include the "cell membrane" that surrounds a cell, the "mitochondrial membranes" that form the outer layers of mitochondria, and the "viral envelope" that surrounds enveloped viruses. In anatomy or tissue biology, a membrane is a barrier formed by a layer of cells. Examples of anatomical membranes include the pleural membranes that surrounds the lungs, the pericardium which surrounds the heart, and some of the layers within the blood-brain barrier.

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