Chronic fatigue syndrome historical perspective

Nomenclature
The naming of this condition has been challenging, since consensus is lacking within the clinical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder, nor even if it is a single homogenous disorder (with a range of possible clinical presentations), or several distinct disorders having many clinical characteristics in common.

Over time and in different countries many names have been associated with the condition(s). Some of the more common names in use include:


 * Myalgic Encephalomyelitis (ME)
 * Chronic Fatigue Syndrome (CFS)
 * Post-Viral Fatigue Syndrome (PVFS)
 * Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

History
Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century.

A major outbreak in 1934 at the Los Angeles County Hospital infected all or most of its nurses and doctors. It was referred to as Atypical Poliomyelitis, and was generally believed to be a form of polio.

The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred at London's Royal Free Hospital in 1955, inflicting mostly the hospital staff, and formed the basis of descriptions by Achenson, Ramsay, and others.

Although early reports described epidemics, and by the 1950’s at least fourteen had occurred worldwide, (see ME/CFS outbreaks) of which seven of the fourteen occurred in staffs of hospitals. By the 1990's at least 50 similar clusters or epidemics have appeared in the medical literature. "It has always been known by investigators that these epidemics of ME/CFS tended merely to highlight the same disease activity in the general public in the epidemic area". Reports of cases were fairly stable through the 70’s. But since 1979 there has been an enormous but poorly documented increase in cases of ME/CFS. These increases compounded slowly until 1984 when an exponential increase occurred. The numbers did not drop afterwards as one might expect after an epidemic but have continued to rise in increasing number.

(Benign) Myalgic Encephalomyelitis was first classified into the International Classification of Diseases in 1969 under Diseases of the nervous system.

The name Chronic Fatigue Syndrome has been attributed to the 1988 article, "Chronic fatigue syndrome: a working case definition", (Holmes definition). This research case definition was published after US Centers for Disease Control epidemiologists examined patients at the Lake Tahoe outbreak.

In 2006 the CDC estimated there were more than 1 million cases of CFS in the US and commenced a public awareness program.

Since inception, the condition has been steeped in controversy. Despite continuous research and many findings, indicating also likely subsets of patients, the present state of study on this condition is fragmented and contentious.

Controversies
ME/CFS is an illness with a long history of controversies, which include:

The name
Competing terms to describe the condition(s) have been used over the years in different parts of the world (see ME/CFS nomenclatures). Many groups say the name Chronic Fatigue Syndrome is unsatisfactory and want it changed because it trivializes the illness. According to studies conducted by Jason, the name Chronic Fatigue Syndrome may be taken less seriously than the name Myalgic Encephalopathy by medical trainees concerning important aspects of the condition.

The cause(s), diagnosis, and treatment
For years, many professionals within the medical community did not recognize ME/CFS as a real condition, nor was there agreement on its prevalence. There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. It may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process. It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. Contested causation may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of compensation, reparation, and blame.

Research priorities
The etiology is still not known, and a major divide still exists over funding for research and treatment of physiological versus psychological and psychosocial aspects of the illness. The division is especially great between ME patient groups and psychological and psychosocial treatment advocates in Great Britain.

Government action
According to the opinion of three Belgian authors of a 2007 paper published in Neuroendocrinology Letters, in some countries it appears there is a political agenda to eliminate the scientific view that CFS is a medical disorder. They stated, the official acceptance of the condition would obviously mean the countries' health care systems would provide support for those patients, but if they are considered hypochondriacs, it becomes easier to deny them health care support.

US veterans with CFS/ME/FMS who have been diagnosed with chronic infections, cannot obtain adequate treatment for their condition. This lack of response due to a lack of effective programmes to assist veterans may ultimately be responsible for the transmission of the illness to non-veterans.

Support for patients
Sufferers describe the struggle for healthcare and legitimacy due to bureaucratic denial of the condition because of its lack of a known etiology. Institutions maintain the exclusion of patient support by rhetorical arguments of the open-endedness of science to delay new findings of fact. Patient groups respond to the systematic nature of these exclusions by developing counter-arguments. This has resulted in an expensive and prolonged conflict for all involved.

In 1998 it became known almost 13 million dollars for CFS research had been redirected or improperly accounted for by the United States CDC. The agency stated the need to respond to other public health emergencies. The director of a U.S. national patient advocacy group charged the CDC had a bias against studying the disease.