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Your CFIDS Public Policy Report
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
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.
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
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
Mark your calendar now
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
firstname.lastname@example.org. We’ll announce further details in
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
email@example.com, visit the Association Web site at
www.cfids.org or call 704-365-2343.