Alternative names for chronic fatigue syndrome
Chronic fatigue syndrome (CFS) is the name currently used by the majority of the medical and scientific community to describe a condition or set of conditions characterized by fatigue and other symptoms. The term is contested, mostly by patients and patient advocacy groups, but also by some doctors. Several of the more common alternative names used to describe what most believe to be the same condition or subtypes include myalgic encephalomyelitis (ME), chronic fatigue immune dysfunction syndrome (CFIDS), and post-viral fatigue syndrome (PVFS).
In 1959, E.D. Acheson an early investigator of benign myalgic encephalomyelitis, wrote: "The wisdom of naming a disorder, the nature of which cannot at present be proved, and which may be due to more than one agent, is debatable." The name used to label the condition (or set of conditions) is one of several controversies related to CFS.
- 1 Current nomenclatures
- 2 Historical nomenclatures
- 3 References
- 4 External links
Chronic fatigue syndrome
The name chronic fatigue syndrome (CFS) was used in the medical literature in 1987 to describe a condition resembling "chronic active Epstein-Barr virus (EBV) infection" but which presented no evidence of EBV as its cause. The initial case definition of CFS was proposed in 1988. These researchers had previously published their investigations of an apparent 1984 outbreak of mononucleosis-like symptoms in Lake Tahoe, Nevada, in the United States, where they found no strong evidence of a connection between Epstein-Barr virus and the symptoms. The name was specifically chosen to represent the major symptom of the condition and to avoid making a judgment about the cause, which was unknown. Today, the term CFS is accepted by scientists and most clinicians.
Many patients, patient groups, and some clinicians perceive the term as trivializing, and as the 1994 Fukuda definition itself cedes, stigmatizing, which led to a movement in the United States to change the name and definition. The CFS Coordinating Committee of the United States Department of Health and Human Services formed a name change workgroup in 2000, recommending CFS be changed to "neuroendocrineimmune dysfunction syndrome" to imply specific underlying etiologies or pathologic processes. However, in 2003 implementation was halted when it was decided that a name change would be too disruptive at that time.
Myalgic encephalomyelitis (ME) means "inflammation of the brain and spinal cord with muscle pain." ME is used in the current ICD10 classification system of the World Health Organization as a subheading under Brain Disorders - post-viral fatigue syndrome. A review from 2001 noted a report that indicates ME is a distinct condition from CFS, but CFS and ME are usually used as synonyms.
The term "myalgic encephalomyelitis" is controversial as CFS has not been associated with any pathology of the muscles or central nervous system. For this reason, in 1996 the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in the United Kingdom recommended use of the name chronic fatigue syndrome instead of myalgic encephalomyelitis. A letter to the editor in The Lancet explained the 1996 report received some acceptance, but also harsh criticism from patients and physicians who said their views had been excluded. Accordingly, the Working Party on CFS/ME that reported recommendations for the medical condition to the CMO in 2002, used both names in an attempt to reach out to patient groups and acknowledge the lack of consensus among professionals and patients on the name. The report declined to recommend one term over the other and preferred the compromise term ‘CFS/ME’.
Many patients, and some doctors, especially in the United Kingdom, prefer to use ME on its own or in conjunction with CFS (ME/CFS or CFS/ME) because they believe it implies a more serious illness than the term chronic fatigue syndrome which focuses simply on fatigue. Margaret Williams, writing for the British campaign group MEActionUK, stated that the term "ME/CFS" was preferred because it more directly addressed a specific medical condition, while CFS/ME implied and placed emphasis on a condition of general fatigue. Some patient groups prefer the name myalgic encephalopathy as a synonym as this does not imply inflammation but simply an illness of the nervous system. The name myalgic encephalopathy has also been evaluated as being perceived as a more serious sounding illness than chronic fatigue syndrome by research outside of the UK.
The first appearance of the term ME was in a 1956 Lancet editorial by Donald Acheson. Three years later, Acheson referred to several older reports and many different names that appeared to describe a similar syndrome, noting that the inflammation is presumed. Acheson also cites criticisms of the correctness of the name used in 1959, "benign myalgic encephalomyelitis", as the disease was not always benign, does not always cause muscle pain, and may not cause inflammation of the central nervous system. In 1962 Russell Brain included ME in his textbook of neurology. In 1978, the British Medical Journal reported that researchers at a Royal Society of Medicine conference to discuss the illness during that year clearly agreed that the symptoms described as myalgic encephalomyelitis made up a distinct nosological entity. The article also stated that, "From the patient's point of view the designation benign is also misleading, since the illness may be devastating."
In 2011, an "international consensus criteria" for myalgic encephalomyelitis was published by a group of 26 individuals from 13 countries and consisting of clinicians, researchers, teaching faculty and an independent patient advocate. The authors rejected the name "chronic fatigue syndrome", re-asserted "myalgic encephalomyelitis" as the appropriate name and WHO classification based on "research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology", and criticized the primary emphasis on "fatigue". On the issue of ME vs CFS, the authors state that patients meeting this new criteria "should be removed from" the Reeves et al. CDC 2005 criteria for CFS and the 2007 NICE criteria for CFS.
Chronic fatigue immune dysfunction syndrome
Chronic fatigue immune dysfunction syndrome (CFIDS) is used by patients and some doctors in the USA, and by the Chronic Fatigue Immune Dysfunction Syndrome Association of America because of what they believe is the inaccuracy and the negative stigma attached to "chronic fatigue syndrome". The term calls attention to the immune dysfunction in patients, which extensive research suggests, is an integral part of the illness.
The World Health Organization's ICD-10 classification system refers to CFS as post-viral fatigue syndrome (PVFS), based on the hypothesis that viruses can trigger chronic fatigue illnesses. After considerable research in this area, certain viruses have been implicated "as one of many possible precipitating and eventually perpetuating factors." Studies of chronic fatigue syndrome have reported increased rates of infection in subsets of patients with, among others, HHV-6, HHV-7, CMV, Epstein Barr, enteroviruses, and two retroviruses: an unnamed HTLV-II-like retrovirus, and XMRV.
The "Oxford 1991" diagnostic criteria for CFS refer to a subtype of CFS called post-infectious fatigue syndrome (PIFS), which is broader than PVFS since it can include any infection, not just viral infections.
Chronic Epstein-Barr virus
Also known as Chronic Mononucleosis, the term CEBV was introduced in 1985 in the United States. The Epstein-Barr virus, a neurotropic virus that more commonly causes infectious mononucleosis, was thought to be the cause of CFS. Subsequent discovery of the closely related human herpesvirus 6 shifted the direction of biomedical studies, although a vastly expanded and substantial body of published research continues to show active viral infection or reinfection of CFS patients by these two viruses. These viruses are also found in healthy controls, lying dormant.
This term was popularized in a November 1990 Newsweek cover story and was never official medical terminology. It reflects a stereotype that CFS mainly affects the affluent ("yuppies"), and implies that it is a form of burnout. The phrase is considered offensive by patients and clinicians. CFS affects minorities at similar rates to Caucasians.
Low natural killer syndrome
This term, used mainly in Japan, reflected research showing diminished in-vitro activity of natural killer cells (NKs) isolated from patients and was used in a paper in 1987. Smaller proportions of NK cells and lower NK activity were also observed by some of the researchers who first used the term CFS. LNKS could be a condition separate from CFS.
Other historical terms
This is the term commonly used in New Zealand. It derives from the name of a town where numerous people suffered from the syndrome.
Royal Free disease
- Sharpe, Michael; Frankie Campling (2008). Chronic fatigue syndrome (CFS/ME). Oxford [Oxfordshire]: Oxford University Press. pp. 7–8. ISBN 0-19-923316-0. Retrieved 2009-10-23.
- Acheson E (1959). "The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia." (PDF). Am J Med 26 (4): 569–95. doi:10.1016/0002-9343(59)90280-3. PMID 13637100.
- Buchwald D, Sullivan JL, Komaroff AL (May 1987). "Frequency of 'chronic active Epstein-Barr virus infection' in a general medical practice". JAMA 257 (17): 2303–7. doi:10.1001/jama.257.17.2303. PMID 3033338.
- 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.
- Holmes GP, Kaplan JE, Stewart JA, Hunt B, Pinsky PF, Schonberger LB (May 1987). "A cluster of patients with a chronic mononucleosis-like syndrome. Is Epstein-Barr virus the cause?". JAMA 257 (17): 2297–302. doi:10.1001/jama.257.17.2297. PMID 3033337.
- Prins JB, van der Meer JW, Bleijenberg G (January 2006). "Chronic fatigue syndrome". Lancet 367 (9507): 346–55. doi:10.1016/S0140-6736(06)68073-2. PMID 16443043.
- Jason LA, Taylor RR. (2001). "Measuring Attributions About Chronic Fatigue Syndrome". J Chronic Fatigue Syndr 8 (3/4): 31–40. doi:10.1300/J092v08n03_04. TXT formal
- Tuller, D (2007-07-17). "Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’". The New York Times. Retrieved 2008-11-30.
- "Advocacy Archives: Name Change". The CFIDS Association of America. Archived from the original on 8 January 2008. Retrieved 2008-01-16.
- Lavrich, Carol (2003-09-29). Name Change Workgroup, CFSCC. Bethesda, Maryland: US Department of Health and Human Services, Chronic Fatigue Syndrome Advisory Committee. Archived from the original on 10 January 2008. Retrieved 2007-12-29.
- Bell DS et al. (2003-12-03). Name Change. Washington, D.C.: US Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) Second Meeting. Archived from the original on 27 February 2008. Retrieved 2008-01-16.
- Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Ramírez G (September 2001). "Interventions for the treatment and management of chronic fatigue syndrome: a systematic review". JAMA 286 (11): 1360–8. doi:10.1001/jama.286.11.1360. PMID 11560542.
- Evangard B, Schacterie R.S., Komaroff A. L. (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 2010-06-25.
- "The Psychiatry Research Trust - Chronic Fatigue Syndrome". Archived from the original on 6 December 2008. Retrieved 2008-11-30.
- 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.
- Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S (January 2002). "Chronic fatigue syndrome: a step towards agreement". Lancet 359 (9301): 97–8. doi:10.1016/S0140-6736(02)07336-1. PMID 11809249.
- Working Party on CFS/ME (January 2002). "Report of the Working Party on CFS/ME to the Chief Medical Officer for England and Wales" (pdf). Department of Health. Archived from the original on 2003-03-22. Retrieved 2009-01-25.
- Sharpe M (2002). "The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?". Clin Med 2 (5): 427–9. doi:10.7861/clinmedicine.2-5-427. PMID 12448589.
- Williams, M (2009-04-27). "ME/CFS Terminology". ME Action UK. Retrieved 2010-06-25.
- Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J (February 2002). "Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease". Am J Community Psychol 30 (1): 133–48. doi:10.1023/A:1014328319297. PMID 11928774.
- Acheson D (1956). "A new clinical entity?". Lancet 270 (6926): 789–90. doi:10.1016/S0140-6736(56)91252-1. PMID 13320887.
- Brain R, ed. (1962). Diseases of the Nervous System (6 ed.).
- (No authors listed) (1978-06-03). "Epidemic myalgic encephalomyelitis". Br Med J. 1 (6125): 1436–7. doi:10.1136/bmj.1.2791.1436-a. PMC 1604957. PMID 647324.
- Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. (October 2011). "Myalgic encephalomyelitis: International Consensus Criteria.". J Intern Med 270 (4): 327–38. doi:10.1111/j.1365-2796.2011.02428.x. PMID 21777306.
- Buchwald D, Cheney PR, Peterson DL (January 1992). "A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection". Ann. Intern. Med. 116 (2): 103–13. PMID 1309285.
- Cho HJ, Skowera A, Cleare A, Wessely S (2006). "Chronic fatigue syndrome: an update focusing on phenomenology and pathophysiology". Curr Opin Psychiatry 19 (1): 67–73. doi:10.1097/01.yco.0000194370.40062.b0. PMID 16612182.
- Klimas NG, Koneru AO (December 2007). "Chronic fatigue syndrome: inflammation, immune function, and neuroendocrine interactions". Curr Rheumatol Rep 9 (6): 482–7. doi:10.1007/s11926-007-0078-y. PMID 18177602.
- Wyller VB (2007). "The chronic fatigue syndrome--an update". Acta neurologica Scandinavica. Supplementum 187: 7–14. doi:10.1111/j.1600-0404.2007.00840.x. PMID 17419822.
- Patnaik, M, Komaroff, AL, Conley, E, Ojo-Amaize, EA, Peter, JB (1995). "Prevalence of IgM antibodies to human herpesvirus 6 early antigen (p41/38) in patients with chronic fatigue syndrome". J Infect Dis 172 (5): 1364–1367. doi:10.1093/infdis/172.5.1364. PMID 7594679.
- Buchwald, D; Cheney, PR; Peterson, DL; Gallo, RC; Komaroff, A. et al. (1992). "A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection". Ann Intern Med 116: 103–116.
- DiLuca, D, Zorzenon, M, Mirandola, P, Colle, R, Botta, GA, Cassai, E (1995). "Human herpesvirus 6 and human herpesvirus 7 in chronic fatigue syndrome". J Clin Microbiol 33 (6): 1660–1661. PMC 228240. PMID 7650209.
- Hickie, I et al. (2006). "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study". British Journal of Medicine 333 (7568): 575.
- Chia, JK (2005). "The role of enterovirus in chronic fatigue syndrome". J Clin Pathol 58 (11): 1126–32. doi:10.1136/jcp.2004.020255. PMC 1770761. PMID 16254097.
- Elaine DeFreitas, et al. "Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome" Proc. Natl. Acad. Sci. USA Vol. 88, pp. 2922-2926, April 1991
- Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome; Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta et al. (8 October 2009) Science doi:10.1126/science.1179052 PMID 19815723
- Sharpe MC, Archard LC, Banatvala JE (February 1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med 84 (2): 118–21. PMC 1293107. PMID 1999813.
- 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. PMID 2578268.
- 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. PMID 2578266.
- Cowley, Geoffrey, with Mary Hager and Nadine Joseph (1990-11-12). "Chronic Fatigue Syndrome". Newsweek: Cover Story.
- "Yuppie flu". Oxford University Press. Retrieved 2008-12-02.
- Frumkin H; Packard RM; Brown P & Berkelman RL (2004). Emerging illnesses and society: negotiating the public health agenda. Baltimore: Johns Hopkins University Press. pp. 156. ISBN 0-8018-7942-6.
- "Chronic Fatigue Syndrome Who's at risk?". U.S. Centers for Disease Control and Prevention. March 10, 2006. Retrieved 2012-01-09.
- edited by Straus, Stephen E. (1994). Chronic Fatigue Syndrome. New York, Basel, Hong Kong: Marcel Dekker Inc. p. 227. ISBN 0-8247-9187-8.
- Aoki T, Usuda Y, Miyakoshi H, Tamura K, Herberman RB. (1987). "Low natural killer syndrome: clinical and immunologic features". Nat Immun Cell Growth Regul. 6 (3): 116–28. PMID 2442602.
- Caligiuri M, Murray C, Buchwald D, Levine H, Cheney P, Peterson D, Komaroff AL, Ritz J. Phenotypic and functional deficiency of natural killer cells in patients with chronic fatigue syndrome. J Immunol. 1987 Nov 15;139(10):3306-13.
- Roberto Patarca-Montero (2004). Medical Etiology, Assessment, and Treatment of Chronic Fatigue and Malaise. Haworth Press. pp. 6–7. ISBN 0-7890-2196-X.
- 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, No. 240, pp. 1-90. Washington, DC, Government Printing Office.
- Blattner R (1956). "Benign myalgic encephalomyelitis (Akureyri disease, Iceland disease)". J. Pediatr. 49 (4): 504–6. doi:10.1016/S0022-3476(56)80241-2. PMID 13358047.
- A. Melvin Ramsay (1986). Postviral Fatigue Syndrome. The saga of Royal Free disease. London: Gower. ISBN 0-906923-96-4.
- Shelokov, A, Habel, K, Verder, E, Welsh, W (August 1957). "Epidemic neuromyasthenia; an outbreak of poliomyelitislike illness in student nurses". The New England Journal of Medicine 257 (8): 345–55. doi:10.1056/NEJM195708222570801. PMID 13464938.
- Wessely, S (1991). "History of postviral fatigue syndrome". British Medical Bulletin 47 (4): 919–941. ISSN 0007-1420. PMID 1794091.