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This CFIDS Primer has been prepared by the Health Professionals Committee of the Massachusetts CFIDS Association.  It was developed in response to the numerous requests for more comprehensive information from a broad range of medical professionals.  We hope this Primer will contribute to a greater medical  understanding of this illness.  We have attempted to make it comprehensive enough to address both general and some specific aspects of CFIDS.  Whenever possible, we have indicated published medical journal studies (the most recent ones in an appendix), but we have also utilized both our own clinical experiences and information available from a number of national CFIDS experts.

We want to express our gratitude to the Massachusetts CFIDS Association, the General Electric Good 
Neighbor Fund and Local 475 of the Carpenter's Union for their generous support for this Primer.  We encourage you to share this Primer with your colleagues.  It may be reproduced by other non-profit organizations as long as a copyright notice and attribution to Mass. CFIDS Association is made.  Please feel free to contact this organization at 781-893-4415 for further publications and Speaker's Bureau information.

        The term chronic fatigue syndrome (CFS) is currently used in the United States to describe a disabling and poorly understood multi-system illness (Table 1.) observed in many parts of the world[1].  In Great Britain, Canada, Australia and New Zealand CFS is generally known as either myalgic encephalomyelitis (M.E.)[2], or post-viral fatigue syndrome[3].  CFS, or very similar diseases have also been called chronic Epstein-Barr virus syndrome or chronic mononucleosis syndrome[4], "Iceland disease" and "Royal Free disease", the two latter terms used in relation to epidemic outbreaks in the 1940's and 50's[5].  Many other terms have been used but recently, because of evidence pointing to immune system abnormalities, the term "chronic fatigue and immune dysfunction syndrome" or "CFIDS" has been utilized. CFIDS is the term we will use in this primer except when referencing documents specifically using the "CFS" terminology.  The CDC and NIH continue to refer to this disease process as CFS.  Recent studies have shown that the diagnoses of CFIDS and fibromyalgia overlap in as many as 75% of patients, suggesting that the two could be the same illness[6,7].

        The purpose of this primer is to provide a detailed description of the illness in order to assist in diagnosing and treating CFIDS.

        Whatever name is used, the syndrome most often consists of neurological and neuromuscular symptoms[8], immunological abnormalities[9,10,11,12], cognitive impairments[13], and disabling fatigue and perhaps an acute flu-like illness, in addition to a variety of other symptoms reflecting involvement in some if not all body systems.  In 1988, a "consensus" set of surveillance criteria (See table 1. Appendix) were outlined in a CDC-sponsored effort to recognize CFS and to standardize the epidemiological definition of CFS[14].

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Table 1.  Adapted CDC Criteria*

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        Precursor Manifestations
                Mild influenza-like symptoms

        Acute Onset
                Acute flu-like symptoms
                Mild fever (37.5 C - 38.6 C)
                Sore throat
                Tender lymph nodes
                Extreme fatigue after minimal exertion
                Chills

        Chronic manifestations
                Myalgias
                Migratory arthralgias without joint swelling or redness
                Sleep disorders
                Headaches
                Sensory alterations (hypo and/or hypersensitivity)
                Cognitive difficulties including spatial
                     disorientation, and short term memory loss
                Disabling fatigue and malaise
                Depression and other personality changes (anxiety,
                     irritability, confusion and forgetfulness)
                Weight fluctuations
                Abdominal pain, nausea, vomiting

*As elicited from patient histories and physical assessments
Adapted from Holmes et al[14].

              In the clinical setting, a broader diagnostic definition is required, and so this outline at times departs from the so-called "CDC surveillance criteria".  The CDC is in the process of updating this criteria.  A review of the literature shows the typical symptom profile as described in more detail below (Table 2).
 
 

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                      Komaroff (see reference #1)

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        The origins of CFIDS remain unknown, though studies currently underway could clarify the cause(s) of the illness in the near future.  Research efforts have focused on viruses and other infectious agents as well as allergic reactions, neuropsychiatric aspects, immunological dysfunctions, and environmental toxins. (Figure 1.)  An association of CFIDS with the Epstein-Barr virus (EBV) was suggested during the mid-1980's[15,16,17] but it is now clear that EBV alone is probably not causative[18]. PCR (polymerase chain reactions) have been used to show the presence of HHV-6[19,20], a new retrovirus[21] related to HTLV-II (Human T-Lymphotropic virus type II[14]), and enteroviruses[22].  It has also been suggested that the viruses mentioned (particularly EBV) may be acting synergistically with others[23].

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Figure 1.  Possible origins of CFIDS

from Carol Jessop MD
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        While clusters of CFIDS cases have long been reported[24], there has been
controversy over contagiousness.  Occurrence of the illness among two or more family members is not rare, but isolated cases appear to be more common.  Some studies[21] have found the same immunological abnormalities in asymptomatic family members as in those with overt illness.

        Several reports suggest that CFIDS may be underdiagnosed in the United States[8,25].  This may be because of lack of absolute clinical signs and laboratory indicators, and what may appear at first glance to be an unrelated array of symptoms and unfamiliar course.  Recent Australian studies have indicated a minimum prevalence there of 39.6 cases per 100,000[26], whereas a New Zealand study showed a prevalence of 127 cases per 100,000[27].  Estimates about the prevalence of fibromyalgia have suggested an incidence of 5 to 7 percent in office practice or about 6 million cases in the U.S.[28].  Although CFIDS has been reported in patients as young as 5 years and as old as 65, most patients are from 25 to 40 years old.  Early studies appeared to indicate a predominance of women[1], but a more recent report has indicated this may not be the case[26].

         CFIDS can present in a spectrum from a mild illness of short duration to a prolonged and extremely disabling condition or anything in between.  Some patients have reported remission of symptoms, but it is not known whether recovery is complete.  Further study is needed to explain how, when and how often remission occurs, as well as why it occurs in some patients and not others.  Questions have been raised as to whether acute onset CFIDS and insidious onset CFIDS are the same illness, with the same etiology[29].
 

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