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." Benign myalgic encephalomyelitis 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 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
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