Lobby Day Success
In response to a
Lobby Day visit from
constituent and CFIDS Association board member Dr. Lynn C. Royster, Rep. Danny
Davis (D-IL-7) made a statement urging increased federal support for CFIDS on
the floor of the U.S. House of Representatives.
Proceedings and Debates of the
109th Congress, First Session
Made by Representative Danny
Tuesday, May 24, 2005
The SPEAKER pro tempore. Under a previous
order of the House, the gentleman from Illinois (Mr.
DAVIS) is recognized for five minutes.
Mr. Speaker, over 800,000 Americans have chronic fatigue
syndrome, CFS, also known as chronic fatigue and immune dysfunction
syndrome, or CFIDS. This is a complex and debilitating medical disorder
characterized by profound exhaustion, intense widespread pain, and severe
problems with memory and concentration. It usually lasts for years and
recovery, in the few cases where that occurs, is slow and unpredictable. Because
the symptoms of CFS are common to other conditions and no diagnostic tests
exist, it is often overlooked by health care providers. In fact, government
studies show that only 15% of those who have CFS have been diagnosed by their
doctor. It is even more difficult for CFS patients to get appropriate
symptomatic treatment or to obtain disability benefits if they become too
disabled to work.
The cause of CFS is not yet known. Much of what we do know
about CFS has been documented by researchers funded by the National Institutes
of Health and the U.S. Centers for Disease Control and Prevention. Here are some
facts: women age 30 to 50 are at greatest risk for developing CFS and Latinos
and African Americans are at greater risk for CFS than Caucasians or
Asians. Children can get CFS too, although it is more common in teens than
younger children. The condition may begin suddenly, as with the flu, or it may
build gradually over time. Physical or mental exertion makes symptoms
Individuals with CFS are severely impacted by the disease and,
according to CDC studies, their functional status is the same as or worse than
those suffering from obstructive pulmonary disease, osteoarthritis, and coronary
heart disease. People with CFS often lose the ability to maintain full-time
employment, attend school and participate fully in family life. Symptomatic
treatment can provide some improved quality of life, but is generally inadequate
in helping patients return to normal activity levels. The Nationís economy is
also seriously affected. The annual direct cost of lost productivity due to CFS
is $9.1 billion, an amount equivalent to our largest corporationsí annual
profits. This sum does not include medical costs or disability
There is hope, though. The Department of Health and Human
Services has chartered a CFS Advisory Committee that meets quarterly to advise
the Secretary for Health on research and education policy as it relates to CFS.
The CDC is conducting promising research that may lead to a diagnostic
test. Other researchers are following important leads that may improve
treatment and deepen understanding of the way CFS affects various body systems.
However, in fiscal year 2004, just $15 million was spent by the Federal
Government to conduct research on this devastating illness.
CFS consistently ranks at the bottom of NIH funding charts and
even during the period when Congress was doubling the NIH budget, support for
CFS research declined. A June 2003 commitment by NIH Deputy Director Vivian Pinn
to issue a Request for Applications for CFS has not been fulfilled. The
Secretary for Health has not yet acted on a set of 11 recommendations delivered
by the CFS Advisory Committee on August 23, 2004.
Many challenges remain and more federal funding is needed to
answer basic questions. CFS warrants the support of this Congress, and we must
find a way to do more for the hundreds of thousands of Americans affected by
this serious illness.