19. marts 2004 The Name Change Workgroup c/o John Herd E-mail: johnherd@johnherd.com We wish to share this with the CFS/ME community. Secretary Tommy G. Thompson, Secretary of Health and Human Services Dr. Larry Fields, Secretary of the Chronic Fatigue Syndrome Advisory Committee Dr. David Bell, Chairperson of the Chronic Fatigue Syndrome Advisory Committee Chronic Fatigue Syndrome Advisory Committee, Office of Public Health and Science 3/17/04 We the members of the Name Change Workgroup wish to voice our profound concern to the CFS Advisory Committee tabling of the name change issue and the drafted recommendations submitted by the Name Change Workgroup. We further request that the Department of Health and Human Services and the CFS Advisory Committee reopen the matter and reconstitute the Name Change Workgroup so the matter may move ahead. The Name Change Workgroup was formed by the Department of Health and Human Services in June of 2000 to study the matter of a name change and to present recommendations to the CFS Coordinating Committee, now replaced by the CFS Advisory Committee. Beginning in June of 2000, the Name Change Workgroup undertook the work it was charged with. A draft of the workgroup's recommendations were presented to the CFS Coordinating Committee during the January 2001 meeting. At that time the CFS Coordinating Committee approved conducting a special session of its next meeting to address implementation and issues specific to the various Department of Health and Human Services agencies. Following that meeting, the Department of Health and Human Services abolished the CFS Coordinating committee and did not replace it with the CFS Advisory Committee until September 5, 2002. During the interim the Name Change Workgroup was encouraged to continue its work and distributed information for public input via the CMMFDC-L@LIST.NIH.GOV listserv. Even after the transfer of responsibility for the establishment of the CFS Advisory Committee within the Department of Health and Human Services, the Name Change Workgroup was encouraged to continue. The Name Change Workgroup repeatedly contacted officials of the Department of Health and Human Services requesting reconstitution of the listserv and clarification of the workgroup's status. Despite multiple conversations with Department of Health and Human Services officials and two conference calls with Department of Health and Human Services officials, we received no information about the workgroup's status. It was not until Dr. Fields spoke at the September 29, 2003 meeting of the CFS Advisory Committee that we were aware that he considered the Name Change Workgroup officially disbanded and that the CFS Advisory Committee was under no obligation to hear from the workgroup or address the name change issue. Even after that meeting, the Name Change Workgroup never received any official notification of being disbanded. Considering the immense misunderstanding and harm inflicted upon patients by the current name CFS, we consider the adoption of the drafted name change recommendations not merely scientifically sound but a moral obligation to enact. The drafted recommendations would benefit the study of the illness, public education about the illness and quality of life for those suffering from the current name CFS. The drafted recommendations established by the Name Change Workgroup reflect in depth study of chronic fatigue syndrome research from the peer reviewed literature, extensive input and survey results from the medical community, and input from a vast segment of the patient community. It is our belief that the recommendations reflect a stringently sound scientific basis, the best solution for a name change, and the support of both the patient community and a great many physicians involved with CFS. We the undersigned members of the Name Change workgroup therefore request: - that the name change matter be reopened, - that the Name Change Workgroup be reconstituted, - that the Name Change Workgroup members be invited to address the CFS Advisory Committee, - that the name change implementation meeting be conducted as approved by the CFSCC, and - that a proposed time line be established to accomplish these objectives. Sincerely, John Herd Leonard Jason, Ph.D. Daniel Kahn, M.D. Nancy G. Klimas, M.D. Carol Lavrich Susan Levine, M.D.