Name Change Working Group Report

Advocacy Alert: 3/28/2001

The Name Change Working Group of the DHHS CFS Coordinating Committee (CFSCC) makes the following public report of its activities through March 16, 2001. On January 29, 2001, the Name Change Working Group held a public forum in conjunction with the AACFS Research and Clinical Conference held in Seattle, Washington. A questionnaire soliciting input on various alternative names to CFS was circulated to conference participants. The Working Group made a status report at the January 30, 2001 meeting of the DHHS CFS Coordinating Committee, announcing that several alternate names were being explored and that public input from patients, researchers and clinicians was being sought. Arrangements were made to extend the circulation of the questionnaire by mail and e-mail, with a deadline for replies set for March 15, 2001. Plans for a full-day session on implementation of a name change was proposed and accepted by the CFSCC and is being planned in conjunction with the full committee's next public meeting.

Since the time of these public sessions, the Working Group has continued to meet every two weeks to continue discussion about specific alternate names and the nature of the final recommendations to the CFSCC, as well as to plan for the anticipated full-day session. Replies to the name change questionnaire are being reviewed by all Working Group members and data will be tabulated after March 15. Other information, including faxes forwarded by the Mycoplasma Registry and e-mail correspondence from various on-line discussion groups, is also being considered by the Working Group. It is important to note that while individual Working Group members hold their own personal views as to the best alternate name for CFS, all Working Group members are committed to engaging in a group process to develop a consensus recommendation, reflecting all viewpoints.

As the CFSCC undergoes its change in structure to a full Department of Health and Human Services (DHHS) Advisory Committee, the Name Change Working Group will continue its activities. A date for the next CFSCC meeting will be announced as personnel are appointed to key leadership positions at DHHS and the CFSCC's transition progresses. Members of the Name Change Working Group have been asked to continue their work while these other processes occur.

Note to Readers: Please bear in mind that the Name Change Working Group has no authority to set policy for the Department of Health and Human Services or any other health agency or organization. Members are volunteers, acting on behalf of the communities which they informally represent. The Working Group's recommendations will be presented to the DHHS CFSCC. After discussion and, possibly, revision, the CFS Coordinating Committee's recommendations will be presented to the Secretary of the DHHS for consideration and possible action.