ME/CFS Primer/Education Pages Why the Name of An Illness is of Importance

Leonard A. Jason
DePaul University

Judith Richman
University of Illinois at Chicago

Nicole Porter
DePaul University

Mary Benton
Wichita State University

Despite it’s chronicity and severity, CFS remains highly controversial (Richman, & Jason, 2001). A particularly high percentage of patients with this illness have experienced disrespect and poor treatment by the health care system. Below, we review an issue involving the name given to this illness, which may have contributed to the diagnostic skepticism and stigma that those with this illness encounter.

The name selected to characterize an illness, such as CFS, can influence how patients are perceived and ultimately treated by medical personnel, family members and work associates. The term chronic fatigue syndrome was coined by scientists in 1988 (Holmes et al., 1988). The syndrome had previously been referred to by various names, including Myalgic Encephalomyelitis. In 1955, there was an outbreak of Myalgic Encephalomyelitis at the Royal Free Hospital in Great Britain, which was described by Ramsay, the medical consultant in charge (Hyde, Goldstein, & Levine, 1992). Later, Ramsay (1981) published a definition of this disease under the name Myalgic Encephalomyelitis. The most prominent of these criteria included: (1) fatigue after minimal exertion (not daily fatigue) and delay of recovery of muscle power after exertion ends, (2) one or more symptoms that indicate circulatory impairment, (3) one or more symptoms that indicate central nervous system involvement (cerebral problems), and (4) and fluctuating symptoms.

Because fatigue was considered to be one of the primary symptoms of this syndrome, in 1988, a group of researchers, many of whom were at the Centers for Disease Control and Prevention (CDC), coined the name CFS and developed a new case definition (Holmes et al., 1988). Patients believed that the term CFS trivialized the seriousness of this illness, as the illness is typified by many severe symptoms in addition to fatigue, and fatigue is a common symptom experienced by many otherwise healthy individuals in the general population (Taylor, Friedberg, & Jason, 2001). In addition, CFS is frequently confused with chronic fatigue, which is a symptom of many illnesses, including some psychiatric disorders. The negative stigma associated with CFS may be partially due to the trivializing name that has been given to this disorder in 1988. Two studies explored whether alternative names for CFS (e.g., chronic fatigue syndrome, Myalgic Encephalopathy) do influence attributions by medical trainees (Jason, Taylor, Plioplys et al., 2002), and college undergraduates (Jason, Taylor, Stepanek, & Plioplys, 2001) regarding this syndrome. Participants were randomly assigned to two groups, with the difference between groups involving the type of diagnostic label given for a case description of a patient with prototypic symptoms of chronic fatigue syndrome. Results showed that participants’ attributions about CFS varied on the basis of the different diagnostic labels used to characterize it. The Myalgic Encephalopathy label was associated with the poorest prognosis, and this term was more likely to be associated with a physiological rather than a psychological cause to the illness. Many patient groups believe that changing the name from Myalgic Encephalomyelitis to CFS was thus a major contributing factor to the stigmatization of this illness.

References

Holmes, G.P., Kaplan, J.E., Gantz, N.M., Komaroff, A.L., Schonberger, L.B., Strauss, S.S., Jones, J.F., Dubois, R.E., Cunningham-Rudles, C., Pahwa, S., Tosato, G., Zegans, L.S., Purtilo, D.T., Brown, W., Schooley, R.T., & Brus, I. (1988a). Chronic Fatigue Syndrome: A working case definition. Annals of Internal Medicine, 108,387-389.

Hyde, B.M., Goldstein, J.A., & Levine, P. (1992). The clinical and scientific basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Nightingale Research Foundation. Ottawa, Ontario, Canada.

Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating attributions for an illness based upon the name: Chronic fatigue syndrome, Myalgic Encephalopathy and Florence Nightingale Disease. American Journal of Community Psychology, 30, 133-148.

Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001). Attitudes regarding chronic fatigue syndrome: The importance of a name. Journal of Health Psychology, 6, 61-71.

Ramsay, M.A. (1981). Myalgic Encephalomyelitis: A baffling syndrome with a tragic aftermath. The ME Association.

Richman, J.A. & Jason, L.A. (2001). Gender biases underlying the social construction of illness states: The case of chronic fatigue syndrome. Current Sociology 49, 15-29.

Taylor, R.R., Friedberg, F., & Jason, L.A. (2001). A clinician's guide to controversial illnesses: Chronic fatigue syndrome, Fibromyalgia, and Multiple Chemical Sensitivities. Sarasota, Fl.: Professional Resource Press.