A dialogue with Association members
July 7, 1999
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
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.
lying to Congress, the CDC has unwittingly gotten our representatives' attention for us.
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."
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
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!
Marc M. Iverson
Chairman & Founder
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.