CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

November 2008

Throughout our 21-year history, the CFIDS Association has been staunchly committed to CFS research. Year after year, that commitment has been demonstrated in two main arenas—advocacy to influence public policy regarding federal funding for CFS research, and through our own research grants program.

Just as the funding priorities for our research grants have shifted over time to take advantage of promising findings and new technologies, we have employed a combination of strategies in our public policy work to advance the mission to conquer CFS. We’ve blown the whistle on federal misconduct and we’ve developed effective agency partnerships, using a pragmatic approach to achieve the goal of expanding CFS research.

Over the past two years we have focused with increasing intensity on the way that the U.S. Centers for Disease Control and Prevention (CDC) has invested the $5 million a year it commits to CFS research. Based on information provided to us directly by the CDC, our analysis reveals suspect funding patterns and little evidence of tangible outcomes. We’ve shared this analysis with the CDC, interested members of Congress and recently with members of the federal CFS Advisory Committee that reports to the secretary of health. Click here to read more about the October 28-29, 2008 meeting and for links to testimony delivered by Dr. Suzanne Vernon and me, as well as three members of the Association’s Board of Directors.

For those steeped in CFS history, recent events may sound familiar to those that occurred a decade ago, when the CDC was found to have misrepresented its CFS spending to Congress and the CFS community. Our purpose in bringing to light those problems and the current ones is to ensure that all funds directed to CFS are used to maximum benefit. We take seriously our role as advocates for those whose lives have been forever altered by CFS. In that role, we must ensure that scarce resources are not wasted. One of our greatest assets in this effort is the reputation we have built as careful stewards of our own funds and those supported through taxpayer dollars. It gives us credibility on Capitol Hill and within our community.

Another of our greatest assets is the support we have been honored with from the CFS community for 21 years, enabling us to invest $25 million in research, public policy and education since 1987. With your sustained philanthropic support, we will continue extending our leadership role in research, by expanding the Association’s research program and flexing our advocacy muscle to get the most from our federal research agencies. Uniting the forces of research and advocacy is essential to conquering CFS and so are you. Keep the momentum building—please do what you can to support the Association’s Annual Fund this season so we can continue the fight on your behalf.

Kim McCleary
President & CEO
The CFIDS Association of America
November 7, 2008