Even though national attention has largely been drawn to
the aftermath of the Sept. 11 terrorist attacks, advocacy work for chronic
fatigue and immune dysfunction syndrome (CFIDS) continues.
The annual Labor, Health and Human Services appropriations bill, which funds health-related programs,
contains important CFIDS-related language regarding
funding priorities for the National Institutes of Health (NIH) and Centers for Disease Control and Prevention
As of press time, the final bill was pending with Congress.
Continuing our campaign to build congressional champions, the Association met
with advocates in key congressional districts by conference call and at an Oct.
28 CFIDS conference in Minneapolis. If we do not continue to shine a light on
the needs of people with CFIDS, the awareness we have built in recent years will
surely dim. The 10th annual CFIDS Lobby Day on Capitol Hill will take place
March 20-21, 2002. We've moved the event to March to take advantage of the
anticipated timing of the fiscal year 2003 budget process. Please make plans now
to participate - PWCs, family members and friends are encouraged to attend.
Even if you can't come to Washington, D.C. in March, we need your help year
'round! Members of the Association's CFIDS Activist (C-ACT) program receive
regular updates on news and opportunities to participate in CFIDS advocacy. Send
an e-mail message to
or visit the Association's Web site at
www.cfids.org to join. If you have question
about advocacy activities, contact the Association by e-mail at
firstname.lastname@example.org or telephone at
- The CDC published an update on its CFIDS research program on its Web site.
It outlines the programs and projects it is conducting with the $12.9 million
restored to the CFIDS program from 1999-2003.
The CDC announced that CFIDS spending in 2001 was $9.9 million and is
expected to be nearly $11.4 million by 2003. This is up from $2.2 million (in
actual spending) in 1998, before funding improprieties were revealed and the
financial restoration program began.
NIH spending on CFIDS continued its no-growth trend in FY2000 and is
expected to remain flat for FY2001. We are hopeful that recent NIH
initiatives, such as a new Program Announcement for CFIDS research grants
(expected soon), revitalization of the NIH CFS Working Group and more involved
leadership from the NIH Office of Research on Women's Health will lead to
Plans to convert the CFS Coordinating Committee (CFSCC) to a Department
of Health and Human Services (DHHS) advisory committee, caught in the change
of administration, are now delayed due the focus of DHHS officials on
bioterrorism. Although the CFS committee has the strong support of some top
department officials, it is uncertain when the committee will meet next. Work
by task forces on a name change for CFS and a public service announcement
(PSA) continues, despite the lapse in formal meetings. The Name Change Working
Group has circulated a draft of its proposal for use of the term chronic
neuroendocrineimmune dysfunction syndrome (CNDS) and is seeking feedback. See
page 6 for details. The PSA was filmed at DHHS offices on Oct. 31.
Distribution plans have not been announced.
Vicki Walker is research and public policy project manager for The CFIDS
Association of America.