Abstracts of Three Articles by Leonard A. Jason, Ph.D., Demonstrating the Adverse Effect of the Name "Chronic Fatigue Syndrome"

Jason LA, Eisele H, Taylor RR. "Assessing attitudes toward new names for chronic fatigue syndrome." Eval Health Prof 24.4 (2001):424-35. Abstract: A questionnaire was distributed at the American Association of Chronic Fatigue Syndrome's biannual convention in Washington in January 2001 as well as through various Internet Web sites and listserves during early February and March of 2001. The sample consisted of 432 respondents. Most respondents (86%) indicated they wanted a name change, although more patients than scientists were in favor of this change. It was also apparent that the patients and physicians were clearly split between adopting a name such as myalgic encephalopathy versus one such as neuro-endocrine immune disorder. Also, among those respondents who selected either of these two choices for a new name, less than 30% of them supported the other name. Although the majority of respondents feel the name should be changed at this time, this survey suggests there are different stakeholders involved in the name-change process, each with strong and sometimes disparate feelings about changing the name.

Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J. "Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy, and Florence Nightingale disease." Am J Community Psychol 30.1 (2002):133-48. Considerable discussion has occurred about stigma surrounding the name given to an illness currently known as CFS. Although patients and medical personnel have expressed varying opinions on this issue, no studies have evaluated how beliefs about the illness change based upon the type of name used for diagnostic purposes. In this study, attributions about CFS were measured in three groups of medical trainees. All groups read the same case study of a person with classic symptoms of CFS, with the only difference being the type of name given. Trainees were then asked to provide attributions about certain aspects of the illness, including its cause, severity, and prognosis. Results suggested that, across name conditions, most trainees appeared to consider the symptom complex of CFS a serious illness resulting in poor quality of life. In addition, findings indicated that the name CFS may be regarded less seriously than the M.E. name with respect to some important aspects of the illness. In this study, specialty of the medical trainee also played a role in how the illness was perceived.

Jason LA, Taylor RR, Richman JA. "The role of science and advocacy regarding a chronic health condition: the case of chronic fatigue syndrome." In Social Psychological Applications to Social Issues: The Social Psychology of Politics. Ed. Vottati, RS, Tinsdale, et al. NY: Kluwer Academic Publishers (2002):157-172.   This paper explores an illness, chronic fatigue syndrome, that is ambiguous in nature and has engendered problematic, stigmatizing societal responses. It offers research strategy to prevent the stigmatization caused by biases and unexamined assumptions about the nature and the likely etiology of the disorder. In the area of CFS, key decisions regarding the name, case definition, epidemiolgy and treatment were made many years ago within a sociopolitical context to which CFS was assumed to be a psychologically based problem. The focus of this paper is on how those in decision-making positions regarding health issues (e.g., medical personnel, CDC officials, and grant funders) have impacted the name of the syndrome (and its implications), its definition, funding, research, and treatment.

 

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