CFSCC Disbanded Last Year!

by Jill McLaughlin

We finally have received information from DHHS regarding the CFSCC (Chronic Fatigue Syndrome Coordinating Committee).  Dr. Irene Stith-Coleman, Assistant Secretary for Health, and Dr. Wanda Jones, Deputy Assistant Secretary for Woman's Health, confirmed that the CFSCC was in the process of being converted into an advisory committee.  They did not know how the decision was made or by whom.

Dr. Jones, who will be handling the administrative portion of the committee issues, was very forthcoming and willing to help us get more specific information regarding the committee.  However, she was very surprised that we did not know more of this as DHHS (Department of Health and Human Services) had met with the CFIDS Association of America (CAA) about the changes of status.  She had assumed the patient community had been informed about this.  When asked about the name change workgroup, Dr. Jones said that she believed it would continue its work under the new advisory committee.

However, because the newly confirmed leadership at DHHS (Assistant Secretary for Health) is still in the process of being briefed, she was not able to provide specific official information on the agency's behalf at this time.

Donna Dean introduced the possibility of a change of status of the CFSCC meeting in Seattle last January, the last time the CFSCC met, saying it would be at the discretion of the new administration.  However last spring we tried following up with DHHS and received a letter from Dr. Kirschstein assuring us that no changes in the committee were going to occur!  Subsequent correspondence from Dr. Dean and Dr. Lawrence confirmed that this was the case.

There have been no CFSCC meetings in over a year, which is the proper forum to present and discus such matters.  There have been many complaints that no meetings of the CFSCC have been scheduled, particularly considering the fact that the GAO (Government Accounting Office) found that this committee had essentially failed in its mission.

According to the minutes for the February 2000 CFSCC meeting, Mr. Jonathan Sterling, Co-Chair of the CFSCC and Chairman of the Board of Directors of the CFIDS Association of America, asked "Who set the meeting agendas?" and Dr. Dean identified the Co-Chairs, in consultation with the committee.  Although Dr. Dean resigned, Dr. Satcher was still officially Chair of the CFSCC until his departure in February, so accordingly a meeting could have been scheduled.  It was not the direct responsibility of the "new administration" or the Secretary's Office to do so.

This committee, in fact, has a federal charter that is in effect through September 2002, so something was actively done to abolish or change it.  The patient community should have been informed of the decision to change/restructure this committee, why such a change was necessary and what the changes will mean in terms of structure and function of the committee.  Once again the patient representatives on the CFSCC have failed to keep the patient community informed of significant events occurring within DHHS.  As one of the two largest national patient organizations, we have requested to have a representative on this committee.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606