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Encephalomyelitis, Myalgic

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is a syndrome of unknown and possibly multiple etiology, affecting the central nervous system (CNS), immune, and many other systems and organs. Most definitions other than the 1991 UK "Oxford", require a number of features, the most common being severe mental and physical depletion, which according to the 1994 Fukuda definition is "unrelieved by rest", and is usually made worse by even trivial exertion (controversially the Oxford and Fukuda require this to be optional only). more...

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However patients usually contend that they have many, often severe symptoms which are far more onerous, such as pain, muscle weakness, loss of brain function, hypersensitivity, orthostatic intolerance, immune and in some cases life-threatening cardiac and respiratory problems, and it is these symptoms exacerbated by extremely low stamina that cause greatest suffering, not "fatigue", which more properly describes a normal state of recovery unrelated to pathology. Some cases resolve or improve over time, and where available, treatments bring a degree of improvement to many others.


Originally studied since the late 1930s as an immunological neurological disorder under the medical term "myalgic encephalomyelitis" (ME), CFS has been classified by the World Health Organization (WHO) as a disease of the central nervous system since 1969. In 1992 and early 1993 the terms "post-viral fatigue syndrome" (PVFS) and "chronic fatigue syndrome" (CFS) were added to ME under the exclusive ICD-10 designation of G93.3.


There are a number of different terms which have been at various times identified with this organic neuroimmune disorder.

  • Myalgic encephalomyelitis (ME, "inflammation of the brain and spinal cord with muscle pain") as a disease entity has been recognized and described in the medical literature since 1938, with the seminal paper being that by Wallis in 1957; Sir Donald Acheson's (a former Chief Medical Officer) major review of ME was published in 1959; in 1962 the distinguished neurologist Lord Brain included ME in his textbook of neurology, and in 1978 the Royal Society of Medicine accepted ME as a distinct clinical entity. In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder. Opponents to the term ME maintain there is no inflammation and that not all patients report muscle pain. United Kingdom and Canadian researchers and patients generally use this term in preference to CFS.
  • Chronic fatigue syndrome (CFS); this name was introduced in 1988 by a group of United States researchers based at the Centers for Disease Control and Prevention, and is used increasingly over other designations, particularly in the United States.
  • Chronic fatigue immune dysfunction syndrome (CFIDS); many people, especially patients in the United States, use the term CFIDS (pronounced ), which was originally an acronym for the above or "Chronic Fatigue & Immune Dysregulation Syndrome". This term was introduced by patients current with the biomedical research in an attempt to reduce the psychiatric stigma attached to "chronic fatigue", as well as the public perception of CFS as a psychiatric syndrome.
  • Post-viral syndrome (PVS or PVFS); this is a related disorder. According to original ME researcher Dr. Melvin Ramsay, "The crucial differentiation between ME and other forms of post-viral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post-viral fatigue states" (Ramsay 1989).
  • Chronic Epstein-Barr virus (CEBV) or Chronic Mononucleosis; the term CEBV was introduced by virologists Dr. Stephen Straus and Dr. Jim Jones in the United States. The Epstein-Barr virus, a neurotropic virus that more commonly causes infectious mononucleosis, was thought by Straus and Jones 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 ME/CFS patients by these two viruses. As these viruses are also found in healthy controls, however, it is uncertain what role they play in CFS.
  • Low Natural Killer cell disease; this name is used widely in Japan. It reflects research showing a reduction in the number of natural killer cells in many CFS patients.
  • Yuppie Flu; this was a factually inaccurate nickname for CFS, first published in a November 1990 Newsweek article. It reflects the belief that CFS mainly affects the affluent ("yuppies"), and implies that it is a form of malingering or burnout. CFS, however, affects people of all races, genders, and social standings, and this nickname is inaccurate and considered offensive by patients. It is likely that this article contributed to the damaging public (and even medical) perception of CFS as a psychiatric or even psychosomatic condition.
  • Uncommonly used terms include Akureyri Disease, Iceland disease (in Iceland), Royal Free disease (after the location of an outbreak), raphe nucleus encephalopathy, and Tapanui flu (after the New Zealand town Tapanui where a doctor who investigated the disease lived).


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The Stigma of CFS - Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Review
From Townsend Letter for Doctors and Patients, 11/1/01 by Katherine Duff

Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

by Naida Edgar Brotherston, MSW, RSW

Hawthorn Medical Press, 10 Alice St., Binghamton, New York 13904 USA

2001, softbound, 168 pp., $24.95

Of all of the challenges facing people with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis as it is called in Canada and the United Kingdom, the stigma surrounding the illness may be the most difficult.

Naida Brotherston, MSW, RSW examines in Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome the many effects of living with a chronic illness including the very real problem of negotiating a world that is misinformed about the illness. She accomplishes this through a research project that involved four young women who had been diagnosed with CFS in their teen years and were in their twenties at the time of their interviews. The research was based on the participants' self-reports of their current and past life experiences with a diagnosis of CFS.

Some of the actual material from the interviews is included in the book and demonstrates, as the author concludes, a similarity between the experiences of the four women. After describing the onset of their illness, the women recount what could be called a frustrating experience with the medical community. There was a long period of uncertainty regarding a diagnosis because tests were inconclusive. Eventually the women were given a diagnosis of CFS because of the constellation of symptoms and the exclusion process, but with no treatment options or prognosis offered. During this phase, the women felt "a connotation of blame was embedded in the diagnosis." As they moved through the medical system seeking treatment, they encountered the variety of explanations of their illness that reflected the medical profession's conflict surrounding the CFS diagnosis. One doctor may accuse the patient of fabricating symptoms to avoid school while another may recommend physical exercise that would be beyond the limitations of the patient. As a result, the women developed a distrust and anger towards the medical community.

Though the participants were experiencing totally debilitating symptoms, they now had to deal with the perceptions of the greater community, which were influenced by the media to minimize the illness with such terms as "yuppie flu" or "Raggedy Ann Syndrome." The media promotes attitudes that are dismissive of the seriousness of the illness, so the women experienced altered relationships with family and friends who believed the media and who doubted at times the veracity of the ill person. This in turn would lead the women to go through periods of self-doubt as to whether or not their own illness was in fact, real.

It becomes evident in Brotherston's research that the complications of living with a stigmatized chronic illness are many. These problems are especially amplified in adolescence where the normal activities of preparing to pursue life goals, learning to live independently and forming a healthy sense of self are interrupted. Their new limited options are then complicated by the opinions of others. In areas of employment, disability support funds or educational opportunities, the women needed the cooperation of others to pursue their goals -- in fact their level of success can be correlated to the amount of cooperation they received.

The women do progress into adulthood and learn some survival skills in the process. They developed an internally-based sense of self that is not drawn from externally generated negative messages. They learn to renegotiate close relationships and make new friends. The new friends are usually other people who have experienced crises in their lives or are also in some way considered different.

There is a lot of valuable information to be gleaned from this book -- and I do mean gleaned. The author has chosen a style that demonstrates the rigorous scientific method she used to construct her study. This may be convincing for some but does make this book somewhat laborious to read. She describes in great detail the grounded theory she chose for her research and how it applied to this study. Rather than provide references in footnotes, they are included in the text in parentheses making the reading experience a choppy one. This method continues in her literature reviews and discussions where the references are so numerous they become a distraction.

The cover recommends this book for patients, family members and those in the helping professions. Those with CFS and others with stigmatized illnesses such as Multiple Chemical Sensitivity and Fibromyalgia will find the experiences of the four women familiar. The book though, does appear to have been written for the benefit of physicians and other medical professionals who need to be convinced with scientific method. But if Brotherston's work teaches us anything, it is the dire need for the mainstream medical community to stop making life even more difficult for people with CFS. This book should help.

COPYRIGHT 2001 The Townsend Letter Group
COPYRIGHT 2001 Gale Group

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