RETURN TO TABLE OF CONTENTS
Winter 2004 

DC Dispatch
Your CFIDS Public Policy Report

CFS Advisory Committee meets again
On Dec. 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 www.cfids.org/advocacy/cfsac-statement.asp.*) 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.

NIH spending questioned
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.

The 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 change.

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 http://www.cfids.org/advocacy/c-act_12122003.asp .*

Appropriations update

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 C-ACTMembership@cfids.org .

Election year opportunities

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 contacts 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 to lobby.

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."