CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

February 2009

Dear Friend,

Two weeks ago our nation celebrated the inauguration of America’s 44th president. During his historic speech, President Obama addressed the role of government in serving the American people.

“The question we ask today is not whether our government is too big or too small, but whether it works – whether it helps families find jobs at a decent wage, care they can afford, a retirement that is dignified. Where the answer is yes, we intend to move forward. But where the answer is no, programs will end. And those of us who manage the public’s dollars will be held to account – to spend wisely, reform bad habits and do our business in the light of day – because only then can we restore the vital trust between a people and their government.”

President Barack H. Obama
January 20, 2009
Washington, D.C.

His words echo in my mind as we look to the year ahead in our public policy work. Government has not served those with CFS as well as it could have. As advocates, we have had to urge, plead, insist and exert influence to make federal programs more responsive to the needs of the CFS community. Still, the meager CFS research and education programs that exist today don’t measure up to the magnitude of this condition, considering how many people are affected, the severe impact it makes on their quality of life and the economic toll it imposes on the individual, the community and the nation.

This year we will take President Obama at his word. We will use his yardstick for measuring how well CFS programs sponsored by our federal heath agencies really work. We will evaluate if CFS-directed dollars are spent wisely, if past bad habits are being reformed and if government research on CFS is being planned and performed in the light of day. Our latest dialogues with the Centers for Disease Control & Prevention (CDC) and at the federal CFS Advisory Committee meeting in late October 2008 suggest strong corrective measures will be needed. (See related report in this issue.) As new leadership for these agencies is recruited, beginning with the Secretary for Health and Human Services, a new director of the National Institutes of Health and a new director of the CDC, we will continue working with program leaders whose service extends from past administrations. We will emphasize the success of our research program and the CFS network launched on a modest budget, especially by federal standards. We will impress upon officials and lawmakers the urgency of serving a community that has waited patiently for progress.

To quote President Obama’s speech again, “For as much as government can and must do, it is ultimately the faith and determination of the American people upon which this nation relies.” Times may be hard right now, but that does not mean we should lower our expectations and allow government to fall so short of its promise for CFS. We must insist on more effective research aimed at better diagnostics and more potent treatments. We must articulate the need for better, more widespread education of health care providers and the public. And we must not give up when our calls for action are muffled by indifference. We have not yielded for 17 years and we are determined to make change for the better. Please support these efforts in whatever ways you can.

Kim McCleary
President & CEO
The CFIDS Association of America
February 3, 2009

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The CFIDS Association of America is dedicated to conquering chronic fatigue syndrome (CFS), which is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis (ME).

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