The VT CFIDS Associaton, Inc


Chronic Fatigue Syndrome Advisory Committee Update
November 2006

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is a Federal Advisory Committee (FAC) and is subject to all the rules and regulations that govern FACs. The purpose of the CFSAC is to advise the U.S. Secretary of Health on matters pertaining to Chronic Fatigue Syndrome (CFS). When constituted in September of 2003, 11 members were appointed. Six members were appointed for two-year terms and the remaining 5 were appointed for 3-year terms. The original charter of the CFSAC expired in September 2006. Although there was a period of uncertainty, the charter for the CFSAC has been “renewed.”
The original two-year term appointees to the Committee, which included the Committee’s original Chair, Dr. David Bell, were replaced when their terms expired. The original three-year term appointees were not replaced when their terms expired. Those appointees were told that their terms would be extended 180 days. Now, at least some of them have been asked if they would be willing to serve an additional year.
The initial Chair of the Committee, Dr. David Bell, rotated off of the Committee at the end of his two-year term. The Department of Health and Human Services (DHHS) then selected another member of the original Committee to serve as Chair. The criteria used by the DHHS for selecting the replacement Chair have not been disclosed. What is known is that the replacement Chair missed one of the two meetings during her tenure as Chair, and yielded the chair to another Committee member for one-half of the meeting she attended. Under the terms of the new charter, more accurately termed the renewed charter, the Committee does not need a Chair to function. The one DHHS official who is sent to these meetings, the Executive Secretary, can officiate over the meetings. To allay the concerns of Committee members that the November 2006 meeting would be run without a Chair, some members were told that DHHS has appointed a new Chair although the Department is not at liberty to say who that person is. The new Chair, according to DHHS staffers, must reveal him/herself. That has not happened 10 days before the November 2006 meeting.
In addition to the 11 appointed Committee members, there are: the Executive Secretary (who represents the DHHS at the CFSAC meetings, coordinates Committee activities and advises the Committee on what it can and cannot do under the charter of the Committee), and Ex-Officio members from other federal agencies. Ex-Officio members advise the Committee. They make reports at each meeting. The current federal agencies who supply Ex-Officio members to the CFSAC are: the Centers for Disease Control and Prevention, the National Institutes of Health, the Food and Drug Administration, the Human Resources Services Administration, and the Social Security Administration.
During its initial three-year tenure, the CFSAC has had 3 Executive Secretaries. Some Committee members feel that the lack of an Executive Secretary dedicated to the CFSAC has interfered with the progress of its work. Therefore, the Committee has requested a “permanent” Executive Secretary. The Committee has been told that a new, permanent Executive Secretary has been appointed. However, no one working in the DHHS has been willing to provide the Committee members with the name of the new Executive Secretary. Committee members have been told that the new Executive Secretary will contact them shortly. DHHS staffers have expressed surprised that this individual has not contacted the members of the Committee by this time – 10 days before the November 2006 Advisory Committee meeting.
When the CFSAC began, it distributed its work among three subcommittees: Education, Research, and Disability. The Sub-Committees gathered information between the quarterly meetings of the Advisory Committee and submitted their reports to the Advisory Committee at the quarterly meetings. Advisory Committee recommendations were written from the subcommittee reports and submitted to the Secretary of Health (Tommy Thompson) through the Assistant Secretary of Health, Christine Beato in September, 2004. As of November 2006, the CFSAC has not received an acknowledgement from the U.S. Secretary of Health for the recommendations submitted. What the Committee has been told, by Ms. Beato’s replacement, is that what happens to the recommendations, after they are submitted, is of no concern of the CFSAC. The Committee’s function is only to make recommendations. When the Advisory Committee asked whether new recommendations would dilute the value of previously submitted recommendations, or if the Committee should resubmit what it feels are the most important of the previous recommendations, the response was that the Committee should submit its best recommendations.
Subsequent to the issuance of its initial recommendations, the Committee chose to devote meetings to specific topics related to CFS such as children with CFS and the disability insurance difficulties encountered by CFS patients. At these meetings, the Committee pondered whether the submission of new or additional recommendations would be prudent. Perhaps under the new charter, with a new, “permanent,” Executive Secretary, and with the reduced or obviated role of the Chair of the Committee, DHHS will communicate to the Committee the relationship between previously submitted recommendations and any new recommendations that the Committee may submit.
The CFS Community has the right to be disappointed in DHHS’s lack of response to the recommendations submitted by the Advisory Committee, in September 2004. Even a letter signed by Congressmen and Senators expressing their concern over the lack of response has not moved the DHHS.
The establishment of the CFSAC by DHHS is an acknowledgement by the federal government that CFS is a serious problem. The existence of the CFSAC draws attention to CFS. The presence of CDC and NIH representatives at each meeting permits an exchange of ideas between CFSAC members and agency representatives who influence the CFS research in these agencies. Moreover, these agency officials listen to the testimony of patients and hear the devastating effects that CFS has on these patients’ lives. The representatives of the CDC and NIH have publicly proclaimed at Advisory Committee meetings that the concerns expressed at the meetings have been heard, have been acted upon, and have influenced policy at their agencies even if the Secretary of Health and Human Services has not responded to the CFSAC’s recommendations. It appears that DHHS has found value in the work of the Advisory Committee since it has renewed the charter of the CFSAC.
However, there is reason for concern. Under the terms of the charter renewal, the number of meetings has been reduced from 4 meetings per year to 2 meetings per year. Even with only 2 meetings per year, the allocated budget for the CFSAC seems inappropriately small particularly since the length of each meeting has been extended from 1 day to 2 days. Some Advisory Committee members are concerned about continuity and productivity with only 2 meetings per year. Moreover, several of the Committee members are CFS patients who, in the past, have had difficulty sitting through a full, one-day meeting, and/or suffered relapses after attending a one-day meeting. Why has DHHS decided to hold two 2-day meetings instead of four 1-day meetings?
There are other indications that DHHS is not giving the Advisory Committee appropriate attention and support. More than one year after the Committee members who were appointed for a three-year term should have been replaced, replacements have not been named. Minutes of the Advisory Committee meetings are not posted in a timely fashion. It currently takes more than 90 days to post the minutes of a meeting. Ten days before the November 2006 meeting, there is no available Agenda despite repeated requests. It is impossible to prepare for a meeting without knowing the agenda. Most troublesome is that there is no active work being done by the Committee at this time.
The initial members of the CFSAC were committed to making a difference for CFS patients. During the first three years of the CFSAC’s existence, DHHS support of the CFSAC declined. Now, under the guise of “Charter Renewal” the Committee’s ability to be effective has been reduced. Since the members of the CFSAC are employees of DHHS, there is little they can do to strengthen the Advisory Committee’s role within DHHS. As the employer, the DHHS should heed the advice of the advisers which it has hired.
That the DHHS has not responded to the Committee’s recommendations, does not provide minutes of the meetings in a timely fashion, and rotates personnel serving as Executive Secretary, suggests a lack of Departmental responsiveness to the needs of the CFSAC. Because there has not been an outcry from the CFS community regarding this behavior, perhaps the Department has developed the false perception that its treatment of the CFSAC is acceptable. When the CFSAC first began meeting, the auditorium in which the meetings were held was filled with patients and their advocates. People would sign up to testify for 5 minute intervals. There was not enough time to accommodate all of them. At the last few meetings, there were less than a dozen patients and patient advocates and public testimony was scant. Perhaps the lack of patient presence at these meetings has been interpreted by DHHS as satisfaction with DHHS’s response to CFS.
If the CFS Community wishes to have an effective CFSAC, it must act. Patients, individually and collectively, as support groups and statewide associations, need to become involved. If sufficient concern is expressed, perhaps the DHHS will listen.
Request that vacancies on the Advisory Committee be filled. Request that DHHS be proactive in filling vacancies. Advisory Committee members’ terms should not expire and then DHHS look for replacements. DHHS should identify qualified individuals and be ready to fill the vacancies when the vacancies occur.
Request a permanent Executive Secretary for the CFSAC. If there is no Executive Secretary between meetings, the work needed to run the next meeting is hampered. The Executive Secretary needs ongoing familiarity with the Committee’s work to be effective. That is not possible when an Executive Secretary serves for a year or less.
Request the return to 4 CFSAC meetings per year. The current schedule of two, 2-day meetings is impractical. Having quarterly meetings enables subcommittees a sufficient amount of time to perform their tasks, write their reports, and report to the parent committee. Having two meetings per year will slow the productivity of the Committee. The workflow will be sporadic. The Committee’s momentum will be lost.
Request that the U.S. Secretary of Health and Human Services enact the CFSAC’s recommendations. The CFSAC spent a year developing these recommendations and crafting their language. All eleven members of the Advisory Committee unanimously endorsed these recommendations. Is there a point or purpose to writing new recommendations when the status of the previous recommendations is unknown?
Request the production and posting of Advisory Committee minutes in a timely fashion. The members of the Committee have the right to know that the transactions of the meeting have been recorded accurately. The CFS Community has a right to know what transpired at the Advisory Committee meetings.
Populate the meetings. The DHHS needs proof that the CFS Community supports and has interest in the CFSAC. If CFS patients and advocates do not attend the Advisory Committee meetings, DHHS may presume there is no interest. Patients are not the only individuals who can attend these meetings. Friends, parents, children, advocates, treating physicians, and caregivers are all welcome and may all testify as to the effect that CFS has had on their lives.
For the CFSAC to be effective, it needs the demonstrated support of the CFS Community. While it is encouraging that the CFSAC charter has been renewed, the renewed charter is a different charter that curtails the effectiveness of the Committee as an instrument of positive change for the CFS Community. DHHS should support and implement the recommendations of the CFSAC and not diminish the CFSAC’s abilities to advocate on behalf of CFS patients. DHHS needs an incentive for doing so. DHHS will be convinced that it is in its best interest to support and implement the CFSAC recommendations when the CFS Community demonstrates an intense interest and support for the work of the Advisory Committee.
To express concern or support, contact the:


Chronic Fatigue Syndrome Advisory Committee (CFSAC),
Office of Public Health and Science,
U.S. Department of Health and Human Services,
200 Independence Avenue,
S.W., Washington, D.C. 20201.
202-690-7694, Fax 202-690-6960
email to:,
or through the website
One word of caution!
U.S. mail, sent to DHHS is delayed for months by germ warfare screening.
If you choose to write, and you wish that your letter be read in a timely fashion,
you will need to send your letter by Fed-Ex or some other private letter-carrying service.

Your involvement can make a difference.

Kenneth J. Friedman, Ph.D.



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