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.

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Congressional Record
Proceedings and Debates of the 109^th Congress, First Session
Made by Representative Danny Davis
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 significantly worse.

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 Nation’s 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 corporations’ annual profits.  This sum does not include medical costs or disability benefits.

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.