Date: Sat, 9 Jul 1994 10:08:26 -0700 Sender: Chronic Fatigue Syndrome NEWSWIRE CFIDS/ME Subject: WIRE: June 1994 Meeting of U.S. ICC-CFS POSTED BY: Roger Burns SOURCE: Interview with Kim Kenney of the CFIDS Assoc. of America COPYRIGHT: Copyright (c) 1994 by Roger Burns. Permission given for reproduction for non-commercial use. June '94 Meeting of U.S. ICC-CFS by Roger Burns The quarterly meeting of the U.S. Interagency Coordinating Committee (ICC) for CFS was held by teleconference on Tuesday, June 28, 1994. The chairman of the committee, Dr. Philip Lee (U.S. Assistant Secretary for Health), was unable to participate and so this conference was chaired by Dr. Brian Mahy of the Centers for Disease Control and Prevention (CDC). Ms. Kim Kenney, executive director of the CFIDS Association of America, participated in the conference and provided some details of what occured to Roger Burns, the publisher of the CFS-NEWS Electronic Newsletter. Dr. Mahy of the CDC reported that several articles about CFS that Dr. Willaim Reeves has co-authored will soon be published in various journals. The article on the revised research case definition has been submitted for publication and further news about it should be available in the near future. The case control study for Atlanta has been completed and it seems to indicate that there is no apparent infectious disease process in place. The San Francisco study is continuing. The four-year sentinel study has been completed, although there will be longitudinal follow-up. A cross-sectional study in Wichita is being developed, and it will take care to more accurately measure ethnic and racial groups. A new cluster study is being implemented for a recent reported outbreak at a Coast Guard station in Clearwater, Florida. The informational brochure "The Facts About CFS" will be ready for publication soon. Contrary to previous plans, Dr. Mahy reported, it likely will not be the subject of a mass mailing. Furthermore, the brochure may need to be revised based on the new research case definition whose publication is pending. Also, any increases in funding from the Congress for CFS-related research at CDC will likely go to work by contractors. Dr. Heidi Jolson of the Food and Drug Administration (FDA) reported that a new drug named Famvar will soon be approved for use which may be helpful in CFS treatments. [Ms. Kenney mentioned later that FDA approval occured on June 30.] A representative of the National Institutes of Health (NIH) reported that requests for grant applications have been issued for the coming fiscal year, and that the three regional CFS research centers are now being re-competed. The brochure "CFS: A pamphlet for physicians" is being revised and the NIH staff is waiting for the CDC's new research case definition to be published before finalizing their updated brochure. Dr. Stephen Straus is continuing his cortisol studies. Dr. Ann Schluderberg, who has long been involved in NIH decision-making regarding CFS research, retired from government service on May 31. Dr. Susan Spring will be taking up Dr. Schluderberg's previous functions regarding CFS matters at NIH. There was little reported from the representative of the Social Security Administration (SSA). The SSA is very involved in an agency- wide re-organization at this time and its staff were not able to make a substantive report on CFS matters for this meeting. Regarding procedural matters of the ICC, Dr. Mahy reported that ICC's chairman Dr. Lee has appointed Dr. Alexis Shelokov to the ICC panel to be a representative of the private research community. The panel had an extensive discussion about when and how its next meeting would be conducted. Dr. Lee had said at the previous meeting (March 1) that the quarterly meetings would alternate between public meetings and teleconferences. Dr. Mahy decided that the next conference would be in September and would again be held by telephone, and that the meeting following that one would be public. Also, Dr. Mahy said that Dr. Susan Spring of NIH would take administrative charge of the ICC during the coming fiscal year which begins on October 1. [Thanks to Kim Kenney for providing this information.]