Syndrome Advisory Committee Update
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
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
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
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
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: email@example.com,
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
you will need to send your letter by Fed-Ex or some other private letter-carrying
involvement can make a difference.
Kenneth J. Friedman, Ph.D.
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