Senate Responds to CFIDS
Thanks to the
work of CFIDS advocates, including those who participated in the Association's
May 12 Lobby Day, Senate action this week has supported our requests for more
research and education about chronic fatigue and immune dysfunction syndrome
(CFIDS, also known as chronic fatigue syndrome or CFS).
Monday, Senators Rick Santorum (R-PA) and Orrin Hatch (R-UT) sent a letter to Secretary for Health Michael Leavitt
asking him to take action on a set of recommendations made by the Secretary's own CFS Advisory Committee. Other members of Congress have written
to the Secretary about these recommendations, yet Leavitt has failed to respond,
even to the committee itself.
The CFIDS Association continues to work with other members of Congress,
including Senate Minority Leader Harry Reid (D-NV), on follow-up measures
to spur the Secretary's action on these important recommendations.
Yesterday, the Senate Appropriations subcommittee that sets spending
levels for health-related research and education included several directives to health agencies to boost CFIDS research
and education. These directives echo the CFSAC's recommendations and the CFIDS
Association's talking points.
Disappointing was the Senate's failure to include direction for HHS to
establish a Florida Center for Excellence for CFS/ME/FM/GWS, a measure requested
and lobbied for by the Florida-based Patient Alliance for Neuroendocrineimmune
Disorders Organization for Research & Advocacy, or P.A.N.D.O.R.A. They were
successful in getting national support for this center and scores of calls made
by CFIDS advocates were made to senators on the appropriations committee.
Rebecca Artman, public policy chair for P.A.N.D.O.R.A., is determined to enter
the process again when appropriations work for FY2007 begins in the new year.
The CFIDS Association is proud to support them in these efforts to establish a
center for research and patient care.
The Senate language is not binding on the
federal health agencies until the bill is passed by both houses of Congress and
signed by the President. It is one of the biggest -- and most divisive --
spending bills and is being covered heavily in the media. Cuts to
agency budgets and specific programs may threaten the CDC and NIH's ability
to implement the directives for CFS research and education. You can check the status of
this bill at
http://thomas.loc.gov/. We'll keep you posted
on the CFIDS-specific provisions that make it through to the final bill. Until
then, calls to your
officials can be very helpful in preserving these important