Why the Name of an Illness is Important

[Guest guest]

From: Jill McLaughlin

http://www.aacfs.org/p/259.html

Why the Name of an Illness is Important

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Leonard A.

De University

Judith Richman

University of Illinois at Chicago

Porter

De University

Benton

Wichita State University

Despite it¹s chronicity and severity, CFS remains highly

controversial (Richman, & , 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 (, Friedberg, & , 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 (, , Plioplys et al.,

2002), and college undergraduates (, , 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 participants¹ 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., , 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. ls 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.

, L.A., , 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.

, L.A., , 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. & , L.A. (2001). Gender biases underlying

the social construction of illness states: The case of chronic

fatigue syndrome. Current Sociology 49, 15-29.

, R.R., Friedberg, F., & , L.A. (2001). A clinician's

guide to controversial illnesses: Chronic fatigue syndrome,

Fibromyalgia, and Multiple Chemical Sensitivities. Sarasota, Fl.:

Professional Resource Press.