History of myalgic encephalomyelitis and chronic fatigue syndrome

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Jump to: navigation, search

Myalgic encephalomyelitis has occurred in both epidemic and sporadic form since at least the 1930s, although is probably much older. The name myalgic encephalomyelitis in an editorial in the Lancet, in 1956, when describing the 1955 Royal Free Hospital outbreak in London, UK.[1][2] The first recorded outbreak of epidemic myalgic encephalomyelitis was in 1934 in Los Angeles and was thought to be an outbreak of atypical polio. After the outbreak in Akureyri, Iceland in 1946, the disease came to be called "Akureyri Disease" or Icelandic disease through much of the 1940s and 1950s. It was named myalgic encephalomyelitis after London's Royal Free Hospital outbreak in 1955. Other names included benign myalgic encephalomyelitis and epidemic neuromyasthenia.

After the Incline Village outbreak in Nevada in 1984, the disease came to be called and redefined as Chronic Fatigue Syndrome. The most recent was putative outbreak was in Arizona in 1996. 

19th century[edit | edit source]

Several descriptions of illness resembling those of chronic fatigue syndrome have been reported for at least two hundred years.[3] In the 19th century, neurologist George Miller Beard popularized the concept of neurasthenia, with symptoms including fatigue, anxiety, headache, impotence, neuralgia and depression.[4] The concept of neurasthenia remained popular well into the middle of the 20th century, eventually coming to be seen as a behavioral or psychiatric fatigue condition rather than physical disease, with the diagnosis excluding cases of Postviral Fatigue Syndrome. Neurasthenia has since largely been abandoned as a medical diagnosis.[5] In the 1990s, the ICD-10 manual of the World Health Organization categorized neurasthenia under F48 Other neurotic disorders, which specifically excluded chronic fatigue syndrome,[6] and Postviral Fatigue Syndrome / Myalgic Encephalomyelitis / Chronic Fatigue Syndrome classed under "Diseases of the Nervous System".[7]

Epidemic myalgic encephalomyelitis (1930s-1960s)[edit | edit source]

In 1938, Alexander Gilliam described an illness that resembled poliomyelitis, interviewing patients and reviewing records of one of several clusters which had occurred in Los Angeles, United States in 1934.[8] The Los Angeles County Hospital outbreak included all or most of its nurses and doctors.[9] Gilliam called the outbreak "atypical poliomyelitis" and described the symptoms as: rapid muscle weakness, vasomotor instability, clonic twitches and cramps, ataxia, severe pain (usually aggravated by exercise), neck and back stiffness, menstrual disturbance and dominant sensory involvement.

Novices and convent candidates at a Wisconsin convent were diagnosed with "encephalitis" in 1936. Two towns in Switzerland had outbreaks of "abortive poliomyelitis" in 1937, and 73 Swiss soldiers were given the same diagnosis in 1939. Outbreaks in Iceland were called "Akureyri disease" or "simulating poliomyelitis" and were later called "Iceland disease." Eight hundred people in Adelaide, Australia became ill during 1949-1951 with a disease "resembling poliomyelitis." Two smaller clusters in the United States during 1950 were diagnosed as "Epidemic neuromyasthenia" and "resembling Iceland disease simulating acute anterior poliomyelitis." Additional outbreaks of poliomyelitis-like "mystery diseases" occurred from the 1950s through the 1980s, in Denmark, the United States, South Africa, and Australia, among others.[9]

Several outbreaks of a polio-resembling illness occurred in Britain in the 1950s.[10] A 1955 outbreak at the Royal Free Hospital Group was later called Royal Free disease or benign myalgic encephalomyelitis.[11][1] After the Royal Free Hospital outbreak, a disorder with similar symptoms was found among the general population and the epidemic form came to be considered the exception.[12][13] Pathology findings, from both monkeys intentionally infected with biological fluids from patients[14] and from rare human casualties,[15] led to the conclusion that the disorder was caused by inflammation of the brain and the spinal cord, particularly the afferent nerve roots, perhaps with neuroimmune disease etiology.[16]

Mass hysteria (1960s-1970s)[edit | edit source]

In the 1960s and 1970s, chronic fatigue symptoms were often attributed to chronic brucellosis, but typically people were seen as having psychiatric disorders, in particular depression.[9] Epidemic cases of benign myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970,[17] provoking criticism in letters to the editor of the British Medical Journal by outbreak researchers, attending physicians, and physicians who fell ill.[18][19][20][21][22][23][24][25][26] The psychiatrists were faulted for not adequately investigating the patients they described,[27] and their conclusions have been refuted.[5][28][29] In 1978 a symposium held at the UK's Royal Society of Medicine concluded that epidemic myalgic encephalomyelitis was a distinct disease entity with a clear organic basis.[30]

Neurological classification[edit | edit source]

Myalgic encephalomyelitis was first classified as a neurological disease when the World Health Organization published the of ICD-8 classification manual in 1969.[31] Myalgic encephalomyelitis was given ICD-8 code 323, and grouped with the other forms of encephalomyelitis under the Diseases of the Nervous System section.[31]

In the later Ninth revision (1977), the ICD-9, the entry for myalglc encephalomyelitis is uses code 323.9 and remains a disease of the nervous system, along with the other forms of encephalomyelitis.[32] There is no mention of a chronic fatigue syndrome (the term was had not been proposed at the time) and there was no mention of an illness named "chronic fatigue".

Chronic fatigue syndrome (1980s and 1990s)[edit | edit source]

The illness gained national attention in the United States when the popular magazine Hippocrates ran a cover story of an epidemic at Lake Tahoe, Nevada, in the mid-1980s.[33] The designation Chronic Epstein-Barr Virus was in use in the U.S.,[34][35] but the magazine used the term "Raggedy Ann Syndrome" to note the fatigue and loss of muscle power patients felt.[36]

Researchers investigating the Lake Tahoe cluster did not find evidence that EBV was involved, and they proposed the name chronic fatigue syndrome, describing fatigue as the main symptom of the illness.[37][38] They published the first working case definition for CFS in 1988.[37] Research increased considerably, and more so after the criteria were relaxed in 1994.[39]

In 1990, researchers presented evidence they found DNA sequences very similar to the human HTLV-II retrovirus in some CFS patients, at a conference in Kyoto, Japan.[40][41] Their study was later published in the Proceedings of the National Academy of Sciences.[42] A reporter on Prime Time Live stated the announcement made headlines all over the world.[43] The CDC first ignored their findings then later conducted a study and published a paper that refuted the hypothesis.[44]

In the United Kingdom, the Chief Medical Officer Kenneth Calman requested a report from the medical Royal Colleges in 1996. This led to the publication of a joint report in which the term "chronic fatigue syndrome" was found to be most representative.[45] This was followed in 2002 by a further report by the new CMO, Liam Donaldson.[46]

The U.S. Centers for Disease Control & Prevention (CDC) recognized CFS as a serious illness, and launched a campaign in June 2006 to raise public and medical awareness about it.[47][48]

XMRV study (2009)[edit | edit source]

A 2009 study published in the journal Science reported an association between a retrovirus xenotropic murine leukemia virus-related virus (XMRV) and CFS. The editors of Science subsequently attached an "Editorial Expression of Concern" to the report to the effect that the validity of the study "is now seriously in question,"[49] and in September 2011, the authors published a "Partial Retraction" of their 2009 findings;[50] this was followed by a full retraction by the magazine's Editor in Chief, after the authors failed to agree on a full retraction statement.[51] Also in September 2011, the Blood XMRV Scientific Research Working Group published a report, which concluded "that currently available XMRV/P-MLV assays, including the assays employed by the three participating laboratories that previously reported positive results on samples from CFS patients and controls, cannot reproducibly detect direct virus markers (RNA, DNA, or culture) or specific antibodies in blood samples from subjects previously characterized as XMRV/P-MLV positive (all but one with a diagnosis of CFS) or healthy blood donors."[52] In December 2011, the Proceedings of the National Academy of Sciences published a similar retraction for an August 2010 paper.[53] Some members of the patient community, who had viewed the XMRV findings as a source of hope for a possible cure, initially reacted negatively when the papers were called into question. One UK researcher reported verbal abuse after publishing an early paper indicating that the XMRV studies were flawed.[54]

Institute of Medicine report (2015)[edit | edit source]

February 15, 2015, The National Academy of Medicine (known as the Institute of Medicine or IOM until June 2015) published a report on ME/CFS, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness[55] proposing a new name – systemic exertion intolerance disease – and a new diagnostic criteria. It has since influenced government policy and healthcare for the disease in the United States and around the world.[56][57][58]

The proposed name proved to be highly unpopular and was not been widely adopted by government agencies or researchers. The CDC adopted the term ME/CFS in place of Chronic Fatigue Syndrome and adopted the IOM's proposed criteria, with post-exertional malaise as a required symptom.[59]

Criticisms of the IOM report include that the diagnostic criteria captured an overlapping but different subset of patients than stricter criteria like the International Consensus Criteria or the Canadian Consensus Criteria. Despite some positive impacts, the IOM report recommendations have remained controversial among many patients and advocacy groups.[citation needed]

Post-exertional malaise as the hallmark symptom and treatments withdrawn[edit | edit source]

A shift in diagnostic criteria and symptom focus began around 2015-2016, with greatly reduced emphasis on fatigue and with post-exertional malaise (PEM) required as a compulsory symptom and frequently referred to as the "hallmark symptom" of ME/CFS. The disease is increasingly referred to as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome rather than Chronic fatigue syndrome, including by the CDC from 2017.[59] This change in emphasis has largely resulted from the release of the full PACE trial outcome data in 2016, and the subsequent re-analysis of the Cochrane review of exercise therapy for ME/CFS, which showed that treatment outcome results and impairment differed when post-exertional malaise was a required symptom.[60][61][62]Graded exercise therapy and cognitive behavioral therapy were found to be either harmful or ineffective for the vast majority of patients with post-exertional malaise, and the recommendations for the and withdrawn by the CDC in 2017, and mostly abandoned by the UK's National Health Service from late 2021.[61][63] The biopsychosocial model was largely abandoned, with ME/CFS regarded as a serious physical disease, and a greater focus on the biomedical model for diagnosis and treatment, and future research.[58][55]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.1 "A new clinical entity?" (PDF). Lancet. 1: 789–790. 1956.
  2. Ramsay, A. Melvin (October 30, 1965). "Hysteria and "Royal Free Disease."". British Medical Journal. 2 (5469): 1062. ISSN 0007-1447. PMC 1847119.
  3. Lorusso, Lorenzo; Mikhaylova, Svetlana V.; Capelli, Enrica; Ferrari, Daniela; Ngonga, Gaelle K.; Ricevuti, Giovanni (February 2009). "Immunological aspects of chronic fatigue syndrome". Autoimmunity Reviews. 8 (4): 287–291. doi:10.1016/j.autrev.2008.08.003. ISSN 1873-0183. PMID 18801465.
  4. Beard, George Miller (1869). "Neurasthenia, or nervous exhaustion". The Boston Medical and Surgical Journal. 3 (18): 217–221.
  5. 5.05.1 Evengård, B.; Schacterle, R. S.; Komaroff, A. L. (November 1999). "Chronic fatigue syndrome: new insights and old ignorance". Journal of Internal Medicine. 246 (5): 455–469. ISSN 0954-6820. PMID 10583715.
  6. World Health Organization (2007). "ICD-10, Chapter V Mental and behavioural disorders (F00-F99)". WHO International.
  7. World Health Organization (2016). "G93 Other diseases of the nervous system - ICD-10 Version:2016". World Health Organization. Retrieved April 13, 2019.
  8. Gilliam, AG (1938), "Epidemiological study on an epidemic, diagnosed as poliomyelitis, occurring among the personnel of Los Angeles County General Hospital during the summer of 1934", United States Treasury Department Public Health Service Public Health Bulletin, Washington, DC, 240, pp. 1–90
  9. 9.09.19.2 Patarca-Montero, Roberto (2004). Medical Etiology, Assessment, and Treatment of Chronic Fatigue and Malaise. Haworth Press. pp. 6–7. ISBN 0-7890-2196-X.
  10. Ramsay, A. Melvin (1986). Postviral Fatigue Syndrome. The saga of Royal Free disease. London: Gower. ISBN 0-906923-96-4.
  11. The Medical Staff Of The Royal Free Hospital (1957). "An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955". British Medical Journal. 2 (5050): 895–904. doi:10.1136/bmj.2.5050.895. PMC 1962472. PMID 13472002.
  12. Wojcik, Wojtek; Armstrong, David; Kanaan, Richard (June 2011). "Chronic fatigue syndrome: labels, meanings and consequences" (PDF). Journal of Psychosomatic Research. 70 (6): 500–504. doi:10.1016/j.jpsychores.2011.02.002. ISSN 1879-1360. PMID 21624573.
  13. Dawson, J (February 7, 1987). "Royal Free disease: perplexity continues". British Medical Journal (Clinical research ed.). 294 (6568): 327–328. ISSN 0267-0623. PMC 1245346. PMID 3028544.
  14. Pellew, RA; Miles, JA (September 1955). "Further investigations on a disease resembling poliomyelitis seen in Adelaide". Med. J. Aust. 2 (13): 480–2. PMID 13272481.
  15. Wallis, AL (1957). "An investigation into an unusual illness seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years" (M.D. Thesis). University of Edinburgh.
  16. Richardson, J (2002). "Myalgic encephalomyelitis: guidelines for doctors" (PDF). Journal of Chronic Fatigue Syndrome. 10 (1): 65–80. doi:10.1300/j092v10n01_06.
  17. McEvedy, CP; Beard, AW (1970). "Concept of Benign Myalgic Encephalomyelitis". British Medical Journal. 1 (5687): 11–5. doi:10.1136/bmj.1.5687.11. PMC 1700895. PMID 5411596.
  18. Scott, BD (January 1970). "Epidemic malaise". British Medical Journal. 1 (5689): 170–175. doi:10.1136/bmj.1.111.170. PMC 1699088. PMID 5370039.
  19. Compston, N. D.; Dimsdale, H. E.; Ramsay, A. M.; Richardson, A. T. (February 1970). "Epidemic malaise". British Medical Journal. 1 (5692): 362–363. doi:10.1136/bmj.1.5692.362-a. PMC 1699022.
  20. Acheson, E. D. (February 1970). "Epidemic Malaise". British Medical Journal. 1 (5692): 363–4. doi:10.1136/bmj.1.5692.363-b. PMC 1698971.
  21. Gosling, PH (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 499–500. doi:10.1136/bmj.1.5694.499-b. PMC 1699452. PMID 5435167.
  22. Burke, GJ (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 500. doi:10.1136/bmj.1.5694.500. PMC 1699458. PMID 5435168.
  23. Hopkins, EJ (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 500–1. doi:10.1136/bmj.1.5694.500-a. PMC 1699426. PMID 5435169.
  24. Galpine, JF (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 501. doi:10.1136/bmj.1.5694.501. PMC 1699416. PMID 5435170.
  25. Poskanzer, DC (May 1970). "Epidemic malaise". British Medical Journal. 2 (5706): 420–1. doi:10.1136/bmj.2.5706.420-b. PMC 1700311. PMID 5420612.
  26. Parish, JG (July 1970). "Epidemic malaise". British Medical Journal. 3 (5713): 47–8. doi:10.1136/bmj.3.5713.47-c. PMC 1700986. PMID 4316803.
  27. Hooper, M. (May 2007). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". Journal of Clinical Pathology. 60 (5): 466–471. doi:10.1136/jcp.2006.042408. ISSN 0021-9746. PMC 1994528. PMID 16935967.
  28. David, AS; Wessely, S; Pelosi, AJ (March 1988). "Postviral fatigue syndrome: time for a new approach". British Medical Journal (Clin Res Ed). 296 (6623): 696–9. doi:10.1136/bmj.296.6623.696. PMC 2545306. PMID 3128374.
  29. Stricklin A, Sewell M, Austad C (January 1990). "Objective measurement of personality variables in epidemic neuromyasthenia patients". S. Afr. Med. J. 77 (1): 31–4. PMID 2294610.
  30. "Epidemic myalgic encephalomyelitis". British Medical Journal. 1 (6125): 1436–7. June 3, 1978. doi:10.1136/bmj.1.2791.1436-a. PMC 1604957. PMID 647324.
  31. 31.031.1 World Health Organization (1969). International Classification of Diseases (PDF). 2 (Eighth Revision ed.). Geneva: WHO. p. 173. Encephalomyelitis (chronic),
    (myalgic, benign) 323
  32. World Health Organization & International Conference for the Ninth Revision of the International Classification of Diseases (1978). Manual of the international statistical classification of diseases, injuries, and causes of death : based on the recommendations of the ninth revision conference, 1975, and adopted by the Twenty-ninth World Health Assembly, 1975 revision: alphabetic index (PDF). 2 (Ninth ed.). Geneva: World Health Organization. p. 182. ISBN 9241540044.
  33. Johnson, Hillary (1996). Osler's Web: inside the labyrinth of the chronic fatigue syndrome epidemic. New York: Penguin Books. p. 24. ISBN 0-595-34874-2.
  34. Jones, J. F.; Ray, C. G.; Minnich, L. L.; Hicks, M. J.; Kibler, R.; Lucas, D. O. (January 1985). "Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies". Annals of Internal Medicine. 102 (1): 1–7. ISSN 0003-4819. PMID 2578266.
  35. Straus, Stephen E. (January 1, 1985). "Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection". Annals of Internal Medicine. 102 (1): 7. doi:10.7326/0003-4819-102-1-7. ISSN 0003-4819.
  36. Day, W (July–August 1987). "Raggedy Ann syndrome". Hippocrates. cover.
  37. 37.037.1 Holmes, Gary P.; Kaplan, Jonathan E.; Gantz, Nelson M.; Komaroff, Anthony L.; Schonberger, Lawrence B.; Straus, Stephen E.; Jones, James F.; Dubois, Richard E.; Cunningham-Rundles, Charlotte; Pahwa, Savita; Tosato, Giovanna; Zegans, Leonard S.; Purtilo, David T.; Brown, Nathaniel; Schooley, Robert; Brus, Irena (March 1, 1988). "Chronic Fatigue Syndrome: A Working Case Definition". Annals of Internal Medicine. 108 (3): 387. doi:10.7326/0003-4819-108-3-387. ISSN 0003-4819.
  38. Barett, Deborah (2004). "Illness Movements and the Medical Classification of Pain and Fatigue". In Packard, RM; Brown, PJ; Frumkin, H (eds.). Emerging Illnesses and Society. London and New York: Johns Hopkins Press. p. 156. ISBN 0-8018-7942-6.
  39. Fukuda, Keiji; Straus, Stephen E.; Hickie, Ian; Sharpe, Michael C.; Dobbins, James G.; Komaroff, Anthony; International Chronic Fatigue Syndrome Study Group (December 15, 1994). "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study". Annals of Internal Medicine. 121 (12): 953. doi:10.7326/0003-4819-121-12-199412150-00009. ISSN 0003-4819.
  40. Palca, J (September 14, 1990). "Does a retrovirus explain fatigue syndrome puzzle?". Science. 249 (4974): 1240–12. doi:10.1126/science.2399461. PMID 2399461.
  41. Altman, Lawrence K. (September 5, 1990). "Virus found that may be linked to a debilitating fatigue ailment". The New York Times. Retrieved February 24, 2009.
  42. DeFreitas, E; Hilliard, B; Cheney, PR; Bell, DS; Kiggundu, E; Sankey, D; Wroblewska, Z; Palladino, M; Woodward, JP (April 1991). "Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome". Proc. Natl. Acad. Sci. U.S.A. 88 (7): 2922–6. doi:10.1073/pnas.88.7.2922. PMC 51352. PMID 1672770.
  43. "CFS and the CDC's Failure to Respond: Primetime Live (1996)". YouTube. 1996. Retrieved December 19, 2018.
  44. "Inability of retroviral tests to identify persons with chronic fatigue syndrome, 1992". Morbidity and Mortality Weekly Report. U.S. Centers for Disease Control and Prevention. 42 (10): 183, 189–90. March 1993. PMID 8446093. Retrieved February 23, 2009.
  45. Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996). Chronic fatigue syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. London, UK: Royal College of Physicians of London. ISBN 1-86016-046-8.
  46. CFS/ME Working Group (2002). "A report of the CFS/ME working group: report to the chief medical officer of an independent working group". London: Department of Health.
  47. "Chronic fatigue syndrome basic facts". Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. May 9, 2006. Retrieved February 7, 2008.
  48. "Address at CFS awareness campaign launch". Centers for Disease Control and Prevention. June 7, 2008. Retrieved March 19, 2022.
  49. Alberts, Bruce (2011). "Editorial Expression of Concern". Science. 333 (6038): 35. doi:10.1126/science.1208542. PMID 21628391.
  50. Mikovits, Judy A.; Dean, Michael; Gold, Bert; Petrow-Sadowski, Cari; Bagni, Rachel K.; Ruscetti, Sandra K.; Peterson, Daniel L.; Hagen, Kathryn S.; Pfost, Max A. (October 14, 2011). "Partial Retraction". Science. 334 (6053): 176–176. doi:10.1126/science.1212182. ISSN 1095-9203. PMID 21998366.
  51. Alberts, Bruce (2011). "Retraction". Science. 334 (6063): 1636. doi:10.1126/science.334.6063.1636-a. PMID 22194552.
  52. Simmons, Graham; Glynn, Simone A.; Komaroff, Anthony L.; Mikovits, Judy A.; Tobler, Leslie H.; Hackett, John; Tang, Ning; Switzer, William M.; Heneine, Walid (November 11, 2011). "Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study". Science. 334 (6057): 814–817. doi:10.1126/science.1213841. ISSN 0036-8075. PMC 3299483. PMID 21940862.
  53. National Academy of Sciences (January 3, 2012). "Retraction for Lo et al., Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors". Proceedings of the National Academy of Sciences. 109 (1): 346–346. doi:10.1073/pnas.1119641109. ISSN 1091-6490. PMC 3252929. PMID 22203980.
  54. "Chronic fatigue syndrome researchers face death threats from militants". The Guardian. August 21, 2011. Retrieved February 2, 2014.
  55. 55.055.1 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Collection: Reports funded by National Institutes of Health. Washington (DC): National Academies Press (US). ISBN 9780309316897. PMID 25695122.
  56. National Health and Medical Research Council Act. "Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". nhmrc.gov.au. Retrieved July 23, 2019.
  57. Maxmen, Amy (January 3, 2018). "A reboot for chronic fatigue syndrome research". Nature. 553: 14. doi:10.1038/d41586-017-08965-0.
  58. 58.058.1 Twisk, Frank (June 2018). "Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn". Diagnostics. 8 (2): 34. doi:10.3390/diagnostics8020034.
  59. 59.059.1 "Symptoms | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved February 25, 2021.
  60. Green CR, Cowan P, Elk R, O’Neil KM, Rasmussen AL (2015). National institutes of health pathways to prevention workshop:advancing the research on myalgic encephalomyelitis/chronicfatigue syndrome. Ann Intern Med 162: 860–865.
  61. 61.061.1 Wilshire, Carolyn; Kindlon, Tom; McGrath, Simon (January 2, 2017). "PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)". Fatigue: Biomedicine, Health and Behavior. 5 (1): 62–67. doi:10.1080/21641846.2017.1299358.
  62. 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): 1–433. doi:10.23970/AHRQEPCERTA219. PMID 30313001. The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials)
  63. 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.

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.

etiology The cause of origin, especially of a 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.

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.

assay 1. (verb) analysis (as of an ore or drug) to determine the presence, absence, or quantity of one or more components. 2. (noun) In biochemistry, any laboratory protocol used to test a sample for one or more qualities.

antibodies Antibody/immunoglobulin refers to any of a large number of specific proteins produced by B cells that act against an antigen in an immune response.

antibodies Antibody/immunoglobulin refers to any of a large number of specific proteins produced by B cells that act against an antigen in an immune response.

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).

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

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.

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.

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.

International Classification of Diseases (ICD) - A system of medical diagnostic codes, created by the World Health Organization (WHO), to classify diseases and other health related conditions for the purpose of international diagnostic consistency. By having common diagnostic codes around the world, health researchers are better able to quantify and track disease burdens. The most current version is called ICD-11. (Learn more: www.who.int)

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

etiology The cause of origin, especially of a disease.

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.

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.

creatine (CR) - A natural substance that turns into creatine phosphate in the body, which helps make ATP. ATP provides the energy for muscles Often taken as a supplement to improve sports performance. (Learn more: www.webmd.com)

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

NICE guidelines Clinical guidelines used in the UK.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.