Name Change Working Group Interim Report

Advocacy Alert:  5/9/2001

The Department of Health and Human Services' Chronic Fatigue Syndrome Coordinating Committee appointed a Name Change Workgroup during the summer of 2000 to consider changing the name of Chronic Fatigue Syndrome to a name which more accurately reflects both the severity of the disease and the organ systems affected by the disease due to the widely held belief that the CFS name has lead to many misperceptions regarding the disease. The Workgroup began to have regular meetings primarily by telephone conference calls. The Workgroup agreed that there was a need to develop a new name, and that the name should not be limited to a single symptom, as had been done with the name chronic fatigue syndrome.  At the State of the Science CFS meeting in Washington during October of 2000, the Workgroup had a chance to meet in person to discuss potential names that might be adopted: The name NEID (Neuro-Endocrine Immune Disorder) was developed as one possibility, as there was evidence of dysfunction in the Neurological, Neuro-Endocrine and Immunological functioning in patients stricken by this disease. In addition, there was also interest in considering the name Myalgic Encephalopathy (ME) or a version of this name. It should be noted that ME/CFS has been defined differently by various defining criteria including Oxford, Ramsey, and Fukuda, and the Oxford ME criteria does specify a group of symptoms that are different from the current Fukuda et al. (1994) CFS criteria. Two other kinds of names were also considered: Polyalgic Asthenia, a name based on symptoms, and Ramsay's Disorder, an eponym. In an effort to collect information from a wide variety of individuals on their existing feelings regarding the need for a name change and these name change candidates, a "Name Change" survey questionnaire was developed in January of 2001 to be broadly disseminated to the various stakeholder groups.

This questionnaire was distributed at the American Association of Chronic Fatigue Syndrome's (AACFS) biannual convention in Washington in January 2001, as well as through various Internet websites and listservs during early February. At the AACFS conference, 108 questionnaires were completed by conference participants, and an additional 324 questionnaires were filled out after the conference and mailed in either by Internet email or hard copy. Therefore, the sample consists of 432 respondents. Below is a summary of the major results of the data collected from the questionnaire.

Of those filling out questionnaires:

69% were Patients
10% were Family Members of Patients
9% were Professionals involved in the Clinical Care of Patients
12% were Professionals actively conducting Research related to this disease

Most respondents (86%) indicated that they wanted a name change at this time:

92% of Patients
86% of Family Members
74% of Clinical Care Professionals
53% of Research Professionals

There does not appear to be a consensus supporting one specific name, although two names were at the forefront:  NEID and ME. When respondents were asked whether they would support the use of a name like ME or NEID, the four groups indicated they would support the names with the following percentages:

Patients	38% selected ME; 46% selected NEID
Family Members	37% selected ME; 49% selected NEID
Clinical Care Professionals	44% selected ME; 41% selected NEID
Research Professionals	48% selected ME; 31% selected NEID

For the figures above, the ME term referred to Myalgic Encephalopathy or a name like it; the survey also contained a category to list "other" names, and if respondent used the term Myalgic Encephalomyelitis or a term like this in the "other" category, it was included in the count for ME.

We also asked respondents to indicate their support for other names, like Polyalgic Asthenia and Ramsay's Disorder, but less than 5% of respondents supported either of these names.

To derive a measure of how strongly respondents felt about their selections for ME or NEID, the questionnaire data were tabulated to discover whether respondents who selected ME or NEID as their first choice when asked to pick one name were likely were they to say that they would support the other choice. For those respondents who selected either of these two choices for a new name, less than 30% of those respondents would support the other name.

The survey suggests that there are different stakeholders with strong feelings about changing the name. It is encouraging to learn from this sample that the majority of respondents do feel that the name should be changed at this time. The Name Change Workgroup will continue to solicit information from various stakeholders as we proceed to develop a recommendation regarding the name change issue. Based on the input that we have received, it is now clear to the Workgroup members that the acronym "NEID" has too many negative connotations associated with it which might be detrimental to the perception of patients with the disease, therefore, we will not be recommending a name with this particular acronym. However, we still are working to develop and consider other related scientific names that do not have problemmatic acronyms. We hope to be able to share these ideas with the various stakeholders soon.

Sincerely,

Members of the Name Change Workgroup