Founder's Forum
A dialogue with Association members

July 7, 1999

Dear Members,

It is now proven. It is now public. CDC officials lied to Congress about funding CFIDS research. They stole $13 million from their (our!) CFIDS research program. Now they think they can get away with just a slap on the wrist. That's all the Inspector General's report means to them.
 
But I am convinced they underestimate us and our determination to get well. The trivializing response by CDC Director Jeffrey P. Koplan---justifying the diversion of funds and promising to fix some accounting procedures---is a slap in the face to us.
 
Rather than simply getting angry (and I am furious), I am seeing this situation as a real opportunity for us to finally get a meaningful response from our federal government. With this hard evidence in hand, we now have more leverage than ever before. With the help of an insider whose trust we cultivated over the years, we caught CDC officials with their hands in the cookie jar, stealing money we desperately need for research and then lying about it. They lied to us and they lied to Congress---and Congress doesn't take that offense lightly.
 
By lying to Congress, the CDC has unwittingly gotten our representatives' attention for us.
 
Now, it's up to us to keep the pressure on!
 
The CFIDS Association of America is taking advantage of this opportunity by generating news coverage of the incident---and thus building public awareness of the illness. The Associated Press released an article over the July 4 weekend. Through May and June, we've seen CFIDS taken seriously in the Washington Post, the Boston Globe, U.S. News & World Report, ABC News, Fox News, the Congressional Record Daily Monitor and many other newspapers.
 
Tom Sheridan, our Washington, D.C. lobbyist, is working closely with members of Congress, while Kim Kenney, our executive director, is preparing to address the issue at a special meeting of the federal CFS Coordinating Committee, of which she is a member. I have written personally to my representatives in Congress. I also wrote to Health and Human Services Secretary Donna Shalala on behalf of the Association, telling her what must be done:
 
"The millions of Americans who have been or are affected by CFS have been betrayed by CDC's callous disregard for Congress' instructions to expand research on this serious, disabling illness.... Please be assured that we will pursue this matter relentlessly until the funds are restored, those responsible are held accountable and CFS research is pursued with vigor in all relevant agencies of the U.S. Public Health Service."
 
Our letters have an enormous impact on how our Congressmen and Senators and even appointed bureaucrats respond when Tom and Kim contact them for their support. Our letters also serve to keep CFIDS on their radar screens and remind our representatives that we are here and that we're counting on them to do the right thing for us.
 
We worked hard to identify the problem and bring it to light. Now let's keep pushing---together---and finally get the CDC on track, taking CFIDS seriously and fulfilling the agency's obligation to us. It's about time. It's our time!

Sincerely,

Write to your Congressman at the U.S. House of Representatives, Washington, DC 20515, and to your Senators at U.S. Senate, Washington, DC 20510. Local addresses and phone numbers can be found in the government pages of your local phone book, and E-mail addresses are listed at www.congress.gov. Keep your letters short, tell them who you are and where you live, and tell them why the $13 million stolen from CFIDS research is vitally important to you.