The CFS Advisory
Committee
Advocacy Alert: 03/23/2004
The CFS Advisory Committee of the U.S. Department of Health
and Human Services met for the third time yesterday, March 22, 2004, in
Washington, DC. The Committee heard a presentation on the peer-review system of
evaluating research grants at the National Institutes of Health, updates from
other federal agency representatives, moving testimony from 10 members of the
public, and organizational updates from leaders of three non-profit
organizations serving the CFIDS community, including CFIDS Association president
& CEO Kim (Kenney) McCleary.
As the first order of business, the Committee revisited its
position on the name change, approved at the Dec. 8, 2003 meeting, considering
whether any new information warranted closer examination of the issues at this
time. Several committee members expressed opinions that their review of the Name
Change Working Group’s proposal had been thorough and the approved position
unanimously supported. No member of the committee voiced support for re-opening
the issue at this time, although there was firm agreement that the topic would
continue to be evaluated at each meeting.
The committee had come under fire for what some perceived to
be its apparent cursory handling of the issue, one of intense interest and
lengthy debate over the years. Some Internet reports questioned whether
committee members had been coerced into their declared statement or if other
back-room collusion had occurred to prematurely thwart momentum to rename the
illness. Chairman Dr. David Bell dealt directly with the allegations, making
assurances that none of these charges were true and that the committee made its
recommendation after full consideration of all the issues. He acknowledged that
the position, while unpopular, reflected their best advice on the matter at this
time.
During the day-long session, three subcommittees were formed
and one preliminary recommendation to the Secretary was put forward.
Subcommittees will be used between public meetings to gather information, lead
inquiries and draft recommendations for consideration by the full committee. Dr.
Roberto Patarca will lead a subcommittee to explore education issues; Attorney
Lyle Lieberman will examine disability matters and a chair will be selected for
the subcommittee on research. The Committee recommended to the Secretary that
three full-time equivalent (FTE) positions be filled in the Centers for Disease
Control and Prevention’s CFS research group. The CDC representative responded to
questions about staffing levels posed by committee members at the past two
meetings, reporting that his staff was short three positions for experienced
scientists.
The Committee intends to make a slate of recommendations
covering a range of topics at its next meeting, planned for mid-June. For more
information about the CFS Advisory Committee, including a roster of members and
minutes of past meetings, visit
http://www.hhs.gov/advcomcfs/index.html
. A more
complete report on the meeting will appear in the spring issue of The 
