History of chronic fatigue syndrome
Several descriptions of illness resembling those of chronic fatigue syndrome have been reported for at least two hundred years. In the 19th century neurologist George Miller Beard popularised the concept of neurasthenia with symptoms including fatigue, anxiety, headache, impotence, neuralgia and depression. This concept remained popular well into the 20th century, eventually coming to be seen as a behavioural rather than physical condition, with a diagnosis that excluded postviral syndromes. Neurasthenia has largely been abandoned as a medical diagnosis. The ICD-10 system of the World Health Organization now categorizes neurasthenia under (F48 Other neurotic disorders) which specifically excludes chronic fatigue syndrome.
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. The Los Angeles County Hospital outbreak included all or most of its nurses and doctors. 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." 800 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.
Several outbreaks of a polio-resembling illness occurred in Britain in the 1950s. A 1955 outbreak at the Royal Free Hospital Group was later called Royal Free disease or benign myalgic encephalomyelitis. 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. Pathology findings, both in monkeys and in rare human casualties, 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 etiology.
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. Epidemic cases of benign myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970, provoking criticism in letters to the editor of the British Medical Journal by outbreak researchers, attending physicians, and physicians who fell ill. The psychiatrists were faulted for not adequately investigating the patients they described, and their conclusions have been refuted. In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity with a clear organic basis.
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. The designation Chronic Epstein-Barr Virus was in use in the U.S., but the magazine used the term "Raggedy Ann Syndrome" to note the fatigue and loss of muscle power patients felt.
Researchers investigating the Lake Tahoe cluster did not find evidence that EBV was involved, and they proposed the name chronic fatigue syndrome, describing the main symptom of the illness. They published the first working case definition for CFS in 1988. Research increased considerably, and more so after the criteria were relaxed in 1994.
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. Their study was later published in the Proceedings of the National Academy of Sciences. A reporter on Prime Time Live stated the announcement made headlines all over the world. The CDC first ignored their findings, then later conducted a study and published a paper that refuted the hypothesis.
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. This was followed in 2002 by a further report by the new CMO, Liam Donaldson.
On October 9, 2009 news articles appeared regarding a study in the journal Science that identified the XMRV retrovirus in a population of people with CFS. Other studies failed to reproduce those findings, sparking a controversy about XMRV's purported association with CFS. The 2009 paper was retracted by Science in December 2011. At the same time - in December 2011 - the Proceedings of the National Academy of Sciences published a similar retraction for an August 2010 paper.
The World Health Organization's (WHO) International Classification of Diseases (ICD), mandates the international classifications of diseases to allow comparison of health and health fields across countries and throughout the world. It should be noted that not all terms appear in the tabular list (Volume 1), and many more terms are listed in the alphabetic index (Volume 3) of the ICD.
Since its introduction into the eighth edition of the WHO ICD-8 in 1969 (code 323), (Benign) myalgic encephalomyelitis has been classified as a disease of the central nervous system.
The term "benign myalgic encephalomyelitis" appears in the 1975 ICD-9 alphabetic index, and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions.
The name Chronic Fatigue Syndrome has been attributed to the USA Centers for Disease Control 1988 research case definition for the illness, "Chronic fatigue syndrome: a working case definition". Chronic Fatigue Syndrome (CFS) was added to ICD-9 after 1988 and listed under code 780.71, Symptoms Signs and Ill-defined Conditions.
Since 1979 the U.S. has used a clinical modification of WHO's ICD 9th revision (ICD-9-CM), and ME is under index: "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalitis) 323.9."
For CFS, a modification to the alphabetic index was made effective on October 1, 1991 to direct users to code 780.7, Malaise and fatigue, the same code used to identify cases of postviral syndrome. In 1998, a new five-digit code included 780.71, Chronic fatigue syndrome, consistent with the WHO version of ICD-9. Chronic fatigue syndrome is classified in tabular list: "Symptoms, Signs and Ill-Defined Conditions," under the sub-heading of "General Symptoms".
CFS is not included as a coded term in the 1992 ICD-10, WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, post-viral fatigue syndrome (PVFS), a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to G93.3, subordinate to PVFS. The alphabetic index contains other terms, such as chronic fatigue syndrome, to which WHO assigned the same code.
The proposed U.S. classification ICD-10-CM (2010 Update replaces July 2009 version) separates CFS and Postviral fatigue syndrome into mutually exclusive categories. "Chronic fatigue, unspecified | Chronic fatigue syndrome not otherwise specified" appears in Chapter XVIII under R53.82. "Postviral fatigue syndrome | benign myalgic encephalomyelitis" appears in Chapter VI under G93.3. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) had previously recommended CFS to be placed under the same neurological code as ME and PVFS, G93.3.
- Lorusso L, Mikhaylova SV, Capelli E, Ferrari D, Ngonga GK, Ricevuti G (February 2009). "Immunological aspects of chronic fatigue syndrome". Autoimmun Rev 8 (4): 287–91. doi:10.1016/j.autrev.2008.08.003. PMID 18801465.
- Beard, G (1869). "Neurasthenia, or nervous exhaustion". The Boston Medical and Surgical Journal: 217–221.
- Evangard B, Schacterie RS, Komaroff AL (Nov 1999). "Chronic fatigue syndrome: new insights and old ignorance". Journal of Internal Medicine 246 (5): 455–469. doi:10.1046/j.1365-2796.1999.00513.x. PMID 10583715. Retrieved June 25, 2009.
- WHO (2007). "Chapter V Mental and behavioural disorders (F00-F99)". ICD-10. Retrieved October 9, 2009.
- 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: United States Government Printing Office) 240: 1–90.
- Roberto Patarca-Montero (2004). Medical Etiology, Assessment, and Treatment of Chronic Fatigue and Malaise. Haworth Press. pp. 6–7. ISBN 0-7890-2196-X.
- A. Melvin Ramsay (1986). Postviral Fatigue Syndrome. The saga of Royal Free disease. London: Gower. ISBN 0-906923-96-4.
- "An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955". Br Med J 2 (5050): 895–904. 1957. doi:10.1136/bmj.2.5050.895. PMC 1962472. PMID 13472002.
- (No authors listed) (1956). "A new clinical entity?". Lancet 270 (6926): 789–90. doi:10.1016/S0140-6736(56)91252-1. PMID 13320887.
- 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.
- 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). Edinburgh University.
- Richardson, J (2002). "Myalgic encephalomyelitis: guidelines for doctors". Journal of Chronic Fatigue Syndrome 10 (1): 65–80. doi:10.1300/j092v10n01_06.
- 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.
- Scott BD (January 1970). "Epidemic malaise". Br Med J 1 (5689): 170. doi:10.1136/bmj.1.111.170. PMC 1699088. PMID 5370039.
- N. D. Compston, H. E. Dimsdale, A. M. Ramsay, A. T. Richardson (February 1970). "Epidemic malaise". Br Med J 1 (5692): 362–363. doi:10.1136/bmj.1.5692.362-a. PMC 1699022.
- E. D. Acheson (February 1970). "Epidemic Malaise". Br Med J 1 (5692): 363–4. doi:10.1136/bmj.1.5692.363-b. PMC 1698971. PMID 5467149.
- Gosling PH (February 1970). "Epidemic malaise". Br Med J 1 (5694): 499–500. doi:10.1136/bmj.1.5694.499-b. PMC 1699452. PMID 5435167.
- Purke GJ (February 1970). "Epidemic malaise". Br Med J 1 (5694): 500. doi:10.1136/bmj.1.5694.500. PMC 1699458. PMID 5435168.
- Hopkins EJ (February 1970). "Epidemic malaise". Br Med J 1 (5694): 500–1. doi:10.1136/bmj.1.5694.500-a. PMC 1699426. PMID 5435169.
- Galpine JF (February 1970). "Epidemic malaise". Br Med J 1 (5694): 501. doi:10.1136/bmj.1.5694.501. PMC 1699416. PMID 5435170.
- Poskanzer DC (May 1970). "Epidemic malaise". Br Med J 2 (5706): 420–1. doi:10.1136/bmj.2.5706.420-b. PMC 1700311. PMID 5420612.
- Parish JG (July 1970). "Epidemic malaise". Br Med J 3 (5713): 47–8. doi:10.1136/bmj.3.5713.47-c. PMC 1700986. PMID 4316803.
- Hooper M (2006). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". J Clin Pathol 60 (5): 466–71. doi:10.1136/jcp.2006.042408. PMC 1994528. PMID 16935967.
- David AS, Wessely S, Pelosi AJ (March 1988). "Postviral fatigue syndrome: time for a new approach". Br Med J (Clin Res Ed) 296 (6623): 696–9. doi:10.1136/bmj.296.6623.696. PMC 2545306. PMID 3128374.
- 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.
- [No authors listed] (June 3, 1978). "Epidemic myalgic encephalomyelitis". Br Med J. 1 (6125): 1436–7. doi:10.1136/bmj.1.2791.1436-a. PMC 1604957. PMID 647324.
- Johnson, Hilary (1996). Osler's Web: inside the labyrinth of the chronic fatigue syndrome epidemic. New York: Penguin Books. p. 24. ISBN 0-595-34874-2.
- Jones J, Ray C, Minnich L, Hicks M, Kibler R, Lucas D (1985). "Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies". Ann Intern Med 102 (1): 1–7. doi:10.7326/0003-4819-102-1-. PMID 2578266.
- Straus S, Tosato G, Armstrong G, Lawley T, Preble O, Henle W, Davey R, Pearson G, Epstein J, Brus I (1985). "Persisting illness and fatigue in adults with evidence of Epstein-Barr virus infection". Ann Intern Med 102 (1): 7–16. doi:10.7326/0003-4819-102-1-7. PMID 2578268.
- Day W (1987). "Raggedy Ann syndrome". Hippocrates: July/August, cover story.
- Sharpe, Michael; Frankie Campling (2000). Chronic Fatigue Syndrome (CFS/ME): TheFacts. Oxford: Oxford Press. pp. 14, 15. ISBN 0-19-263049-0. Retrieved April 2, 2008.
- Packard RM, Berkelman RL, Brown PJ, Frumkin H (2004). Emerging Illnesses and Society. JHU Press. pp. 156. ISBN 0-8018-7942-6.
- Holmes G, Kaplan J, Gantz N, Komaroff A, Schonberger L, Straus S, Jones J, Dubois R, Cunningham-Rundles C, Pahwa S (1988). "Chronic fatigue syndrome: a working case definition". Ann Intern Med 108 (3): 387–9. doi:10.7326/0003-4819-108-3-387. PMID 2829679.
- Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A; International Chronic Fatigue Syndrome Study Group (1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study". Ann. Intern. Med. 121 (12): 953–9. doi:10.1059/0003-4819-121-12-199412150-00009. PMID 7978722.
- Palca J (September 14, 1990). "Does a retrovirus explain fatigue syndrome puzzle?". Science 249 (4974): 1240–12. Bibcode:1990Sci...249.1240P. doi:10.1126/science.2399461. PMID 2399461.
- 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.
- DeFreitas E, Hilliard B, Cheney PR et al. (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. Bibcode:1991PNAS...88.2922D. doi:10.1073/pnas.88.7.2922. PMC 51352. PMID 1672770.
- Sam Donaldson, Nancy Snyderman, Paul Cheney, David Bell, Elaine DeFreitas, Hillary Johnson, PWC's, Paul Pollard, Mrs. Dailor, Philip Lee (March 27, 1996). Sick & Tired (Television). ABC News.
- 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.
- 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.
- "Chronic fatigue syndrome basic facts". Centers for Disease Control and Prevention. May 9, 2006. Retrieved February 7, 2008.
- Gerberding (June 7, 2008). "Address at CFS awareness campaign launch" (pdf). Department of Health and Human Services. Centers for Disease Control and Prevention.
- Morgan, David (October 9, 2009). "Study isolates virus in chronic fatigue sufferers". News Daily. Retrieved October 9, 2009.
- Lombardi VC, Ruscetti FW, Das Gupta J et al. (October 2009). "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome". Science 326 (5952): 585–9. Bibcode:2009Sci...326..585L. doi:10.1126/science.1179052. PMID 19815723. (Retracted, see doi:10.1126/science.334.6063.1636-a)
- Erlwein O et al. (2010). "Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome". In Nixon, Douglas F. PLoS ONE 5 (1): e8519. Bibcode:2010PLoSO...5.8519E. doi:10.1371/journal.pone.0008519. PMC 2795199. PMID 20066031.
- Harriet C T Groom, Virginie C Boucherit, Kerry Makinson, Edward Randal, Sarah Baptista, Suzanne Hagan, John W Gow, Frank M Mattes, Judith Breuer, Jonathan R Kerr, Jonathan P Stoye, Kate N Bishop (2010). "Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome". Retrovirology 7 (1): 10. doi:10.1186/1742-4690-7-10. PMC 2839973. PMID 20156349.
- van Kuppeveld FJ, Jong AS, Lanke KH et al. (2010). "Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort". BMJ 340: c1018. doi:10.1136/bmj.c1018. PMC 2829122. PMID 20185493.
- Alberts B (December 2011). "Retraction". Science 334 (6063): 1636. Bibcode:2011Sci...334.1636A. doi:10.1126/science.334.6063.1636-a. PMID 22194552.
- Lo SC, Pripuzova N, Li B, et al. (January 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". Proc. Natl. Acad. Sci. U.S.A. 109 (1): 346. Bibcode:2012PNAS..109..346.. doi:10.1073/pnas.1119641109. PMC 3252929. PMID 22203980.
- World Health Organization. "The WHO Family of International Classifications". World Health Organization. Retrieved April 18, 2008.
- Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards (March 2001). A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases (PDF). Centers for disease Control. Retrieved April 29, 2008.
- International Classification of Diseases I. World Health Organization. 1969. pp. 158, (vol 2, pp. 173).
- International Classification of Diseases II. World Health Organization. 1975. p. 182.
- Centers for Disease Control (2006). "International Classification of Diseases 9th Revision Clinical Modification". National Center for Health Statistics. pp. g 516. Retrieved April 29, 2008. Index to Diseases ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD9-CM/2006/Dindex07.zip
- Centers for Disease Control (2006). "International Classification of Diseases 9th Revision Clinical Modification". National Center for Health Statistics. pp. g 532. Retrieved April 29, 2008. Tabular List ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD9-CM/2006/Dtab07.zip
- International Classification of Diseases (Tabular List ed.). World Health Organization. 2007.
- http://www.cdc.gov/nchs/icd/icd10cm.htm International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM), 2010 Update. Retrieved 2010-05-21.
- Jarman, John (January 25, 2006). "Chronic Fatigue Syndrome Advisory Committee Sixth Meeting". U.S. Department of Health & Human Services. Retrieved April 30, 2008.