Definitions of myalgic encephalomyelitis and chronic fatigue syndrome

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Over the course of three decades, many definitions or case criteria have been developed to diagnose either myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), or Systemic Exertion Intolerance Disease (SEID) which is an ME/CFS criteria. Some of these definitions or criteria are meant only to be diagnostic, i.e., used in a clinical setting to aid in diagnosis and some are meant to be used both in a clinical and research setting.

Each of these criteria and case definitions have been considered lacking in complete reliability and accuracy. Another change in the definition is assumed when medical research uncovers more of the pathophysiology of this illness.[1]

ME[edit | edit source]

The International Consensus Criteria is currently used in some research and by few clinicians in some countries. Ramsay definition, Nightingale definition and London criteria are currently not in use.

CFS[edit | edit source]

The Holmes criteria is currently not in use. The Oxford criteria has been very recently retired but was heavily used in the UK by researchers and some clinicians. The Fukuda criteria is used in research by several countries including the US and sometimes in the UK. Reeves criteria is currently being used in the NIH Post-Infectious ME/CFS Study but overall it is not in use.

Combined (ME/CFS)[edit | edit source]

The Canadian Consensus Criteria is sometimes used by clinicians and for research in many countries but has not been officially adopted by most countries including the US. NICE guidelines are used by clinicians in the UK.

Note: ME/CFS (or CFS/ME in parts of Europe) is the acronym now used in the US, UK, and some other countries.

'SEID'[edit | edit source]

  • 2015 Institute of Medicine (IOM) diagnostic criteria[13]
  • The name "Systemic Exertion Intolerance Disease" (SEID) was proposed in conjunction with this criteria, but was not adopted.[14]
  • Currently used for by the CDC for ME/CFS diagnosis[15]

The IOM criteria is an ME/CFS criteria proposed for use in the US in clinical settings. The NIH Post-Infectious ME/CFS Study is using this criteria along with three other criteria.

The Centers for Disease Control and Prevention (CDC) outlines the IOM diagnostic criteria on their ME/CFS page IOM 2015 Diagnostic Criteria.

Note on Definition flaws[edit | edit source]

Definitions with a asterisk (*) are considered to be by most ME/CFS patients, many ME/CFS patients groups, and several ME/CFS researchers as being seriously flawed in that these criteria capture individuals suffering from chronic fatigue and not chronic fatigue syndrome, myalgic encephalomyelitis or Systemic Exertion Intolerance Disease.

Comparison[edit | edit source]

Narrowest and broadest diagnostic criteria[edit | edit source]

The retired Oxford criteria for CFS selected the highest number of patients as having CFS, and the Canadian definition of ME/CFS selects the smallest number of patients, leading to radically different results in research. Nacul et al. (2017) stated:

"For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria. The Pace trial and FINE trial used Oxford criteria."
"When studies using the broad Oxford criteria (Sharpe et al., 1991) were excluded, a virtual disappearance of effect for graded exercise therapy (GET), cognitive behaviour therapy (CBT) and other psychological therapies recommended by the NICE guidelines (National Institute for Health and Care Excellence (NICE), 2007) was revealed."[23]
See also
Research bias in ME/CFS.

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ Williams, Yolonda J.; Jantke, Rachel L.; Jason, Leonard A. (2014). "Chronic Fatigue Syndrome: Case Definitions and Diagnostic Assessment". New York State Psychologist. 26 (4): 41–45. PMID 27594717.
  2. ↑ "Ramsay's Definition of M.E." cfids-me.org. 1986. Retrieved November 13, 2020.
  3. ↑ The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)
  4. ↑ Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
  5. ↑ Howes, Sandra; Goudsmit, Ellen M.; Shepherd, Charles (October 15, 2014), Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines. 2014, archived from the original on September 23, 2015
  6. ↑ Holmes, G.P.; Kaplan, J.E.; Gantz, N.M.; Komaroff, A.L.; Schonberger, L.B.; Straus, S.E.; Jones, J.F.; Dubois, R.E.; Cunningham-Rundles, C. (March 1988). "Chronic fatigue syndrome: a working case definition". Annals of Internal Medicine. 108 (3): 387–389. doi:10.7326/0003-4819-108-3-387. ISSN 0003-4819. PMID 2829679.
  7. ↑ Sharpe, M.C.; Archard, L.C.; Banatvala, J.E.; Borysiewicz, L.K.; Clare, A.W.; David, A.; Edwards, R.H.; Hawton, K.E.; Lambert, H.P. (February 1991). "A report--chronic fatigue syndrome: guidelines for research". Journal of the Royal Society of Medicine. 84 (2): 118–121. ISSN 0141-0768. PMC 1293107. PMID 1999813.
  8. ↑ Fukuda, K.; Straus, S.E.; Hickie, I.; Sharpe, M.C.; Dobbins, J.G.; Komaroff, A. (December 15, 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group". Annals of Internal Medicine. 121 (12): 953–959. doi:10.7326/0003-4819-121-12-199412150-00009. ISSN 0003-4819. PMID 7978722.
  9. ↑ Reeves, William C.; Wagner, Dieter; Nisenbaum, Rosane; Jones, James F.; Gurbaxani, Brian; Solomon, Laura; Papanicolaou, Dimitris A.; Unger, Elizabeth R.; Vernon, Suzanne D. (December 15, 2005). "Chronic fatigue syndrome--a clinically empirical approach to its definition and study". BMC medicine. 3: 19. doi:10.1186/1741-7015-3-19. ISSN 1741-7015. PMC 1334212. PMID 16356178.
  10. ↑ 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. ↑ Carruthers, Bruce M.; Jain, Anil Kumar; Meirleir, Kenny L. De; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip (January 1, 2003). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 11 (1): 7–115. doi:10.1300/J092v11n01_02. ISSN 1057-3321.
  12. ↑ "Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management | Guidance". nice.org.uk. 2017. Retrieved November 13, 2020.
  13. ↑ Institute of Medicine (2015). "Proposed Diagnostic Criteria". nationalacademies.org. Retrieved November 13, 2020.
  14. ↑ "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. November 8, 2018. Retrieved April 12, 2019.
  15. ↑ "Symptoms | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved February 25, 2021.
  16. ↑ De Becker, P; McGregor, N; De Meirleir, K (September 2001). "A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome". Journal of Internal Medicine. 250 (3): 234-240. PMID 11555128.
  17. ↑ Jason, Leonard A.; Helgerson, Jena; Torres-Harding, Susan R.; Carrico, Adam W.; Taylor, Renee R. (March 2003). "Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability" (PDF). Evaluation & the Health Professions. 26 (1): 3–22. ISSN 0163-2787. PMID 12629919.
  18. ↑ Jason, Leonard A.; Brown, Abigail; Clyne, Erin; Bartgis, Lindsey; Evans, Meredyth; Brown, Molly (September 2012). "Contrasting case definitions for chronic fatigue syndrome, Myalgic Encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis" (PDF). Evaluation & the Health Professions. 35 (3): 280–304. doi:10.1177/0163278711424281. ISSN 1552-3918. PMID 22158691.
  19. ↑ Twisk, Frank NM (2015). "Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms". World Journal of Methodology. 5 (2): 68. doi:10.5662/wjm.v5.i2.68. ISSN 2222-0682. PMC 4482824. PMID 26140274.
  20. ↑ 20.0 20.1 Jason, Leonard A.; Kot, Bobby; Sunnquist, Madison; Brown, Abigail; Evans, Meredyth; Jantke, Rachel; Williams, Yolonda; Furst, Jacob; Vernon, Suzanne D. (2015). "Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition". Health psychology and behavioral medicine. 3 (1): 82–93. doi:10.1080/21642850.2015.1014489. ISSN 2164-2850. PMC 4443921. PMID 26029488.
  21. ↑ Jason, L.A.; Sunnquist, M.; Brown, A.; Newton, J.L.; Strand, E.B.; Vernon, S.D. (2015). "Chronic fatigue syndrome versus systemic exertion intolerance disease". Fatigue: Biomedicine, Health & Behavior. 3 (3): 127-141. doi:10.1080/21641846.2015.1051291. PMC 4556426.
  22. ↑ Sunnquist, Madison; Jason, Leonard; Nehrke, Pamela; Goudsmit, Ellen (2017). "A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". Journal of Chronic Diseases and Management. 2 (2): 1013. PMC 5663312. PMID 29104961.
  23. ↑ 23.0 23.1 Nacul, Luis; Lacerda, Eliana M; Kingdon, Caroline C; Curran, Hayley; Bowman, Erinna W (March 1, 2017). "How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?". Journal of Health Psychology: 1359105317695803. doi:10.1177/1359105317695803. ISSN 1359-1053. PMC 5581258. PMID 28810428.

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.

The "closeness of an observation to the true clinical state".[1] With respect to diagnostic tests, "accuracy" means how specific and sensitive the test is.[2]

accuracy The "closeness of an observation to the true clinical state". With respect to diagnostic tests, "accuracy" means how specific and sensitive the test is.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

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.

See ME/CFS.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

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.

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.

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.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

NICE guidelines Clinical guidelines used in the UK.

NICE guidelines Clinical guidelines used in the UK.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

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