DC Dispatch
Your CFIDS Public Policy Report

Prime season for grassroots advocacy
The period between the November elections and the start of the new session of Congress in January is an excellent time to introduce yourself — and CFIDS —to new and returning members of the U.S. House of Representatives and Senate. New members will be making appearances in their districts, holding town meetings and appearing on local call-in radio shows. Unless Congress holds a lame-duck session after the election, returning members will be in their districts as well.

Take advantage of this opportunity to spread the word about CFIDS. Ask the members what they know about CFIDS, and be prepared to provide a sound-bite description if their response falls short. Invite them to attend a local support group meeting. Ask friends and family to send candidates a copy of their voter registration cards with “I care about CFIDS and I vote” written on the page’s edge. And if you identify a supportive new member, volunteer to help in their district or local office (health and other circumstances permitting).

The best time to make an impression on new members of Congress is now. Do your part to educate them about the need for federal support in the fight against CFIDS.

Committee updates
The proposal for a CFS Advisory Committee to the Secretary for Health remains stalled in a department-wide review of all advisory committees. The Washington Post recently reported that many of the 260-plus existing committees are being disbanded or completely repopulated.

The Association remains in contact with Health and Human Services department staff, pushing for progress and an announcement of the committee’s formation.

The Name Change Working Group is reviewing diverse replies received from advocates after a clarification document was posted on several Internet listservs, including the Association’s C-ACT list. The document provided further detail on a proposed recommendation of the term “neuroendocrineimmune dysfunction syndrome.” The working group continues to meet regularly, preparing to make a report to the anticipated CFS Advisory Committee. At present, discussions focus on the means by which any new name for CFS would be implemented.

Lobby Day 2003 planned
Mark your calendar now for September 17 and 18, 2003. CFIDS advocates will gather in our nation’s capital to prepare for and conduct the Association’s 12th annual Lobby Day. The timing is perfect to inform newly elected members of Congress and to refresh ties with returning members as the 108th Congress gets underway.

The 2002 event, held in March, drew 72 advocates from 15 states. The training session and extensive written materials ensure that the group is well prepared to meet with lawmakers and their staff members. Many advocates report that the support and affirmation they receive during the meetings make the experience worth repeating year after year. The collegiality of others who understand the impact of CFIDS is memorable for other participants.

Let us know if you’re thinking of attending. Call 704-365-2343 or send a message to lobbyday03@cfids.org. We’ll announce further details in January. 

Join C-ACT to stay in the loop
Members of the Association’s CFIDS Activist (C-ACT) program receive regular mailings and online updates about CFIDS-related news and opportunities to participate in advocacy programs. To join, send an e-mail message to c-act-subscribe@yahoogroups.com, visit the Association Web site at www.cfids.org or call 704-365-2343.