Testimony of

 

Congressman Bob Filner (D-CA)

 

CHRONIC FATIGUE SYNDROME COORDINATING COMMITTEE

 

NATIONAL INSTITUTES OF HEALTH

Washington D.C., Fibruary 8, 2000

 

 

I wish to thank the Committee again for inviting me to speak on a health issue as important as Chronic Fatigue Syndrome.  I very much wished to be here for the November 2, 1999 Committee Meeting, but was detained in the House of Representatives for an important vote.

 

But the issues I raised back in November, in my submitted written testimony, is still with us—maybe even more so.

 

Last week, on February 2nd, the Washington Post reported that the CDC was apparently diverting funds from Hantavirus research as well as from Chronic Fatigue Syndrome.  It appears to me the CDC still does not “get it.”  A CDC researcher was quoted as saying, “How can some Congressman know better than we what the important public health issues are?” 

 

This is a complete misunderstanding of the role of elected officials in a democracy!  In fact, we may know better—by talking to constituents from our districts who are sick, by reading medical journal articles, by talking to experts on the illness, by investigating.  We eventually make a reasoned judgment and direct our funding accordingly.

 

Of course we may not know better—and we give departments and agencies the chance to testify and to educate us.  But, on the completion of this democratic process, our executive departments must carry out the legal mandates.  That is a democracy.

 

Enough of political science; let’s get back to medical science.

 

As a senior Democrat on the House Veterans’ Affairs Committee, I have for some time been investigating the cause of Gulf War Illness, which I am convinced is a real and debilitating disease.

 

Various credible theories have been advanced.  One of the most credible for the majority of the instances of both Gulf War Illness and Chronic Fatigue Syndrome appears to be mycoplasma infection in the blood.  Since it’s being found in such high numbers in both diseases, and patients are recovering after antibiotic treatment, the simple conclusion to me is they are related diseases.

 

And, also according to credible studies, the mycoplasma infection is contagious.

 

Now, no one yet knows the true cause of Persian Gulf War Illness (PGWI) or Chronic Fatigue Syndrome (CFS)—but here is a theory advanced by credible researchers.  It seems to me the simple prudence would dictate—and dictate immediately:

 

1.     Funding research on this theory.  For example, Dr. Garth Nicolson wants to conduct a double-blinded study for mycoplasma in CFS patients.  Why not fund him?

2.     Treating mycoplasmas, found in the blood, as a reportable, contagious disease.

3.     Requiring the reporting of every diagnosis of PGWI, CFS, and Fibromyalgia Syndrome.

4.     Making sure that America’s blood supply is not contaminated with mycoplasma.

5.     Getting a clear plan for the allocation of the $12.9 million previously taken from CFS research.

6.     Withdrawing from circulation the current CDC handbook on CFS which makes misleading statements on mycoplasma as a cause of CFS.

 

What amazes me is the current so-called “treatment” of patients diagnosed with PGWI, CFS or Fibromyalgia.  They are first treated as being mentally ill, depressed or under stress, put on strong, often addictive, pharmacologic drugs, given minimal disability payments, told they have a non-contagious “syndrome”—even when other family members come down with the disease and they test positive for mycoplasma and other infections.  They are forced to fight the VA, HMO’s, and health insurance companies in order to obtain antibiotics, and when they do use them and begin to recover, they are told by their respective health officials that they aren’t actually sick from mycoplasma.

 

This Committee can truly advance a healthy America by joining me in these recommendations to the CDC.