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Your CFIDS Public Policy
CFS Advisory Committee meets again
8, just 40 days after the Department of Health and Human Services (DHHS)
convened the Chronic Fatigue Syndrome Advisory Committee (CFSAC) for the first
time, the new committee again met. The 11-member group heard updates from the
five federal health agencies that report to it. Chairman Dr. David Bell led
discussions on the mission and priorities for the committee, research funding
priorities, provider education, public awareness and the name change. Members of
the public were given an hour to deliver public testimony. Jon Sterling, the
Association’s chairman, represented the Association at this meeting.
A list of 32 National Institutes of Health (NIH)-funded
CFS-related research projects was circulated by Dr. Nahid Mohagheghpour, one of
the researchers appointed to the committee. She presented an analysis of the
research, expressing concerns about the quality of some of the listed studies
and the potential loss of promising projects that are in jeopardy due to NIH’s
decision not to continue support for CFS cooperative research centers, which
have been in existence since 1993. Another committee member, Dr. Charles Lapp,
questioned whether certain projects were relevant to CFS. Dr. Mohagheghpour
suggested that priority should be given to multicenter studies and those that
seek to identify the primary cause of CFS or to find animal models to study the
disease. She also highlighted the need for more standardized methods to improve
comparability between studies.
When asked by committee members for NIH
supported research project summaries and their respective funding levels, the
NIH representative to the committee, Dr. Eleanor Hanna, stated that this
information was not available to her. She noted that only two of the 32 projects
listed relate to new grants and that total funding for 2004 was likely to drop
to $6 million from $7.7 million, but none of the committee members questioned
the reason for the 22 percent decline. Dr. Hanna also reported that a draft of a
new research announcement soliciting CFS studies would be completed by the end
of January. Dr. Bell stated that in order for the committee to advise DHHS about
federally sponsored research, it is essential that more information about funded
studies be made available to CFSAC members.
Committee member Dr. Roberto Patarca
reviewed health care provider education activities conducted by various
organizations and agencies. He focused most heavily on efforts supported by the
Centers for Disease Control (CDC) and carried out by The CFIDS Association. He
shared his disappointment that the number of participants was not greater,
although Dr. Lapp, a member of the faculty for this
project, recommended that first year results be seen as
a starting point. The committee discussed ways to extend outreach and encourage more
doctors to learn about CFS.
The most highly anticipated discussion of
the day came late in the afternoon. The Name Change Working Group, formed by
DHHS to explore changing the name "chronic fatigue syndrome" to another term,
had submitted its recommendations to the CFSAC at the committee’s first meeting
on September 29, 2003. The proposal suggested identification of a condition
somewhat broader than CFS called neuroendocrineimmune dysfunction syndrome (NDS)
with numerous subgroups (including myalgic encephalo-myelitis (ME) and "Fukuda
criteria," which refers to the 1994 CFS case definition) fitting under this
larger umbrella term. These recommendations were based on three years of
deliberation by the working group, including assessment
of several surveys and consultationwith researchers, clinicians and patient advocates.
Dr. Bell read a draft statement he had
prepared with committee input in response to the proposal. He summarized,
stating "the CFSAC agrees that the name ‘chronic fatigue syndrome’ is a poor
name. However, we feel that a change of this name to another name should occur
only when there is a better understand-ing of the pathophysiology of the
illness." (The full statement can be viewed at
A vote was taken to approve the statement; it passed unanimously, with Dr. Lapp
abstaining due to his participation on the Name Change Working Group. Several
observers who had championed the proposal appeared stunned by the swift decision
and offered objections. Dr. Bell moved on to new business and the hour of public
testimony that concluded the day.
The committee plans to hold its next
meeting in March 2004. DHHS staff are working to establish a CFSAC Web site and
listserv to facilitate communication with the public and among committee members.
Some members of Congress are concerned that generous budget increases provided
to the National Institutes of Health (NIH) in recent years have not been used
in ways that will accelerate medical advances and improve the nation’s health. Two
Congressional committees have held hearings about NIH, inviting advocacy groups and researchers
to voice their concerns about funding policies and priorities.
CFIDS Association is sharing its concerns
about funding for
CFIDS research with NIH
staff, Congressional committees and other advocacy organizations and coalitions.
This year, NIH will be an intense focus of our public policy activities.
Board considers name change
The CFSAC’s decisionto decline recommendations
made by the Name Change Working Group was explained in a statement approved at
the Dec. 8 meeting (see above). The Association’s Board met on Dec. 10 to review
and discuss the statement and to formulate a response. Because of the importance
of this issue to the CFIDS community, since 1998 the Board has maintained
authority for setting and communicating Association policy on the name
In its statement released on Dec. 11, the
Board reaffirmed its position that "a name change is necessary" and urged the
CFSAC to "serve the CFS community and the public by propelling research and
public policy issues forward so that answers are found that would satisfy its
requirements to recommend a name change." The Board’s statement can be viewed at
As this issue of the Chronicle goes to
press, Congress will return to Washington to complete work on the 2004 funding
bills that support thousands of federal programs, including health and
biomedical research. The CFIDS Association’s requests for increased funding of
CFIDS research and direction to various health agencies have been shared with
key legislators continuously by individual advocates, The Sheridan Group (the
Associ-ation’s lobby firm) and Association staff. These bills move sluggishly
through Congress due to political battles over big programs with huge budgets.
Still, it’s important that we carefully follow the health bill’s progress to
ensure that our provisions are not lost as language and numbers change to
reflect the latest political compromises. Watch the Web site (www.cfids.org) for
updates, or join our C-ACT listserv by sending your name and e-mail address to
In November all members of the House of
Representa-tives, one-third of the Senate and the President will be elected. The
vast majority of these legislators is seeking re-election and will spend
weekends and session breaks campaigning in their districts and states. New
candidates for office will be highly visible as well. Now is an excellent time
to attend town hall meetings and other public appearances where you might be
able to talk briefly with the candi-date or submit a question about CFIDS
research funding. Advocates with lots of energy and time might consider volunteering in a campaign. The
made there can prove beneficial if the person is elected now, or at some
time in the future.
Access to presidential candidates is much
more limited, although unique opportunities do exist. Watch for online chats,
call-in radio and TV programs and other ways to pose CFIDS-related questions to
presidential hopefuls. You never know where people may end up!
Lobby day postponed
For the first time in 13 years, we have
decided not to schedule a lobby day for 2004. Instead, we will be focusing on
helping people who are concerned about CFIDS participate in CFIDS advocacy
efforts, without the financial, medical and personal burden of traveling to Washington, D.C.
Having people with CFIDS demonstrate
strong support for the Association’s policy initiatives has always been key to
our success on Capitol Hill. Historically, this has largely occurred on lobby
day. But new tools make it easier than ever for citizens to interact with their elected officials without
ever leaving home,
eliminating the burden of asking people to physically travel to Capitol Hill
With this being a major election year,
the possibility exists for considerable turnover among members and staff after
Nov. 2. If leadership of the House or Senate changes parties, committee
assignments will change dramatically too.
These circumstances call for a major
CFIDS education campaign in 2005. In 2004, we’ll be asking you to write more
letters and make more phone calls — and providing you with improved tools to do
so. We’ll also begin planning for a large-scale 2005 lobby day. Join C-ACT today to ensure
that details of all advocacy activities reach you first!
* If you do not have Internet access,
send a self-addressed, stamped envelope to the Association at the address on the
inside front cover of this issue and ask for "Name Change Statements."