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Journal of Disability Policy Studies
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Stigma and the Term Chronic Fatigue Syndrome

Results of Surveys on Changing the Name

Leonard A. Jason

DePaul University

Cordelia Holbert

DePaul University

Susan Torres-Harding

DePaul University

Renee R. Taylor

University of Illinois

Considerable discussion has occurred concerning the diagnostic label chronic fatigue syndrome (CFS). Many patient groups argue that using this term trivializes the seriousness of the syndrome. A federal government organization, the Chronic Fatigue Syndrome Coordinating Committee, appointed a Name Change Workgroup to attempt to develop different terminology for this disorder. This group distributed a poll to patients and health-care providers to obtain information about its recommendation to use an umbrella term, chronic neuroendocrineimmune dysfunction syndrome, and subtypes under it. In addition, the CFIDS Association, a national self-help advocacy organization, distributed a questionnaire to a group of health-care providers concerning these recommendations. The findings of both polls are presented. Overall findings indicated that the majority of patients want the name changed and that the term chronic neuroendocrineimmune dysfunction syndrome was acceptable to the majority of this group.

Journal of Disability Policy Studies, Vol. 14, No. 4, 222-228 (2004)
DOI: 10.1177/10442073040140040401
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