Assessing Attitudes Toward New Names for Chronic Fatigue Syndrome

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 listservs 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 stake-holders involved in the name-change process, each with strong and sometimes disparate feelings about changing the name.