NAME: Letter from the Name Change Workgroup to the members of the CFSAC 15. december 2003 Please Note: This document was sent to us today for distribution on the Co-Cure list by Carol Lavrich, Chair of the Name Change Workgroup, with the following message: "Please post the text of this letter to Co-Cure. The NCW wishes to make it public. This letter was sent to all members of the CFSAC on November 13th, prior to the December meeting. "I also want to add a couple of statements of my own: 1) the NCW draft proposal which was circulated at the first CFSAC meeting was still considered by the NCW to be a "DRAFT" document, not a completely finalized recommendation, and 2) there are at least some members of the current NCW who would be happy to continue to work on the name change issue. Carol Lavrich" ___________________________________________________ November 13, 2003 Dr. David S. Bell Chairman, Chronic Fatigue Syndrome Advisory Committee 77 South Main Street Lyndonville, NY 14098 Dear Dr. Bell, Congratulations on your appointment to the Chronic Fatigue Syndrome Advisory Committee (CFSAC). We are grateful that you have agreed to serve on this important committee as its chairman. We have tremendous confidence in your ability to lead the CFSAC in efforts that will strengthen federal CFS research and education programs. We are writing to you as members of the Name Change Workgroup (NCW) formed mid-2000 by the Department of Health and Human Services, at the recommendation of the CFS Coordinating Committee, the chartered committee that preceded the CFSAC. A list of NCW members is enclosed. Our group has met by telephone monthly for more than three years to define and explore a multitude of issues related to the name "chronic fatigue syndrome." We have conducted surveys, held meetings with CFS patients, researchers, clinicians and other stakeholders and circulated several documents related to various aspects of the name change. In conducting our work we have been impressed with near total unanimity in the opinion that the term "chronic fatigue syndrome" is a grossly inadequate label for a condition of great complexity and significant morbidity, and that the stigma associated with the name compounds the devastating toll that the illness takes on patients. We appreciate the opportunity that was given to our group's chairman, Carol Lavrich, to address the CFSAC at its September 29, 2003 meeting. We are concerned, however, that the decision made by the CFSAC to table this matter pending your review of documents generated by the NCW will short-change issues that warrant further consideration by the CFSAC and the CFS community-at-large. The draft document our group shared with CFSAC on September 29 was circulated in hopes that the CFSAC would endorse continuation of the NCW's efforts. We recognize that it is vitally important to address how a change would impact important research and education activities and study further issues of effectively accomplishing a name change. It is understandable that at the first meeting CFSAC members might feel overwhelmed by the number and importance of issues competing for priority consideration. The three years during which there were no meetings of any CFS-related advisory committee have certainly amplified expectations and multiplied calls to action. However, we respectfully request that one component of that action be to work toward a name change. The name change issue is of great concern to the CFS community and we feel strongly that the process begun by the NCW should continue. While some recommendations have taken form (e.g., the concept of sub-types under a larger framework of illness identified as neuroendocrineimmune dysfunction syndrome (NDS)), others have not. There is still a lack of clarity about implementation steps, the impact on case definition issues, indexing, insurance and managed care systems, etc. These are important considerations regardless of the specific alternative term selected. It would also be helpful to develop guidance on the nature and scope of the education campaign that will be necessary to promote the new name. We urge the CFSAC to affirm the need to continue research and dialogue on this issue of deep interest and importance to the CFS community. The CFSAC's charter makes it possible to establish "standing and ad hoc subcommittees". We request that this provision be used to continue name change activities. We recognize that it may be appropriate to "revitalize" the membership of this group to reflect the new CFSAC membership and to ensure active participation. Several members of the NCW are willing to serve to transfer information, insights and background regarding points of consensus and agreement that have been established with the CFS community. It would be tragic if this work were lost, either through dramatic changes in subcommittee membership or by declining to continue these efforts in any CFSAC-sponsored forum. We have discussed these issues with Dr. Charles Lapp, a member of our workgroup since its inception. Due to his recent appointment to the CFSAC, he feels it necessary to recuse himself from signing this letter. However, he does support the requests we are making. Thank you for your consideration of our requests. We understand that there are many important issues before the committee, yet we believe that the name change issue is inextricably linked to many of the priorities identified by the committee at its first meeting. We look forward to your favorable reply. Sincerely, Name Change Workgroup John Herd Santa Barbara, Calif. Leonard Jason, PhD Chicago, Ill. Daniel Kahn, MD Iowa City, Iowa K. Kimberly Kenney Charlotte, NC Nancy G. Klimas, MD Miami, Fla. Carol Lavrich, NCW Chairman Potomac, Mary. Susan Levine, MD New York City, NY Enclosures: Official NCW Roster Letter of invitation extended to those on the NCW cc: Appointed members of the CFS Advisory Committee Dr. Larry Fields, Acting Executive Secretary, CFS Advisory Committee