Capitol Hill Visits Emphasize Opportunities to Expand Research

Kim McCleary and Dr. Suzanne Vernon

Who? Members of the Association’s board of directors (Diane Bean and Amy Squires), Association staff (Kim McCleary and Suzanne Vernon, PhD), a long-time volunteer (Loretta Spotila, PhD), and staff from B&D Consulting (Dave Zook, JD and Jennifer Carey)

When? March 3 & 4, 2010

Why? The annual appropriations process of directing the use of federal funds through legislation begins with subcommittee meetings on the Senate and House side that generally take place in April or May. Deadlines for Congress members’ requests hit much earlier, and individual offices set even earlier deadlines to gather input from constituents and interest groups.

Our meetings emphasized the research and education opportunities presented by the surge in interest in CFS generated by the published report of a link between XMRV and CFS. This information was explained to staff representing members of the Senate and House Appropriations Subcommittee on Health and Human Services, Labor, Education and Related Agencies (L/HHS).

We also met with staff members of Congressmen/women who serve on the Appropriation Subcommittee for Defense, to build support for the inclusion of CFS as an eligible topic under the Congressional Directed Medical Research Program funded by the Department of Defense. We tied our request, which must demonstrate military relevance, to the recent announcement by the Veterans Administration to re-examine the services provided to up to 697,000 service men and women who served in Operations Desert Shield and Desert Storm (the Gulf War) and returned from service with multi-symptom illnesses. There is considerable research associating some of these illnesses with CFS.

What Was Distributed? Depending on the committee that the member of Congress served on, we provided one or both of our funding request justifications, and recent related media articles about CFS.

Read the Labor/HHS Appropriations Justification
Read the Defense Appropriations Justification

How? We worked in two teams to cover 20 meetings over two days. After a short preparation session on the morning of the first day, we headed for the Hill with our information packets and fanned out to the three House of Representatives buildings and three Senate buildings, often walking back and forth across the Capitol to accommodate busy staff schedules.

With Whom Did You Meet? Here is the list of offices with whom we scheduled appointments with legislative staff, but were often able to speak briefly to the member of Congress as well:

U.S. Senate
Sen. Richard Durbin (IL) (both committees)
Sen. Kay Bailey Hutchinson (TX) (both committees)
Sen. Herb Kohl (WI) (Dept. of Defense)
Sen. Frank Lautenberg (NJ) (past CFS supporter)
Sen. Patty Murray (WA) (both committees)
Sen. Jack Reed (RI) (Labor/HHS)
Sen. Arlen Specter (PA) (both committees)

U.S. House of Representatives
Rep. Rob Andrews (NJ) (past CFS supporter)
Rep. Danny Davis (IL) (past CFS supporter)
Rep. Rosa DeLauro (CT) (Labor/HHS)
Rep. Jim Gerlach (PA) (past CFS supporter)
Rep. Rush Holt (PA) (past CFS supporter)
Rep. Patrick Kennedy (RI) (Labor/HHS)
Rep. Nita Lowey (NY) (Labor/HHS)
Rep. James Moran (VA) (both committees)
Rep. Sue Myrick (NC) (past CFS supporter)
Rep. Dave Obey (WI) (both committees)
Rep. Ron Paul (TX) (past CFS supporter)
Rep. Ileana Ros-Lehtinen (FL) (past CFS supporter)
Rep. Chris VanHollen (MD) (House leadership)

The annual appropriations cycle has been somewhat interrupted by health care reform legislation moving through both the House and the Senate, so we will monitor the requests and continue discussions with office that indicated support. We’re report any updates in the Link and will create opportunities for individuals to request support through our 2010 Virtual Lobby Day in May. Watch for details!

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