[Congressional Record Volume 144, Number 59 (Tuesday, May 12, 1998)]
[Extensions of Remarks]
[Page E834]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




INTERNATIONAL CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME AWARENESS DAY

                                 ______
                                 

                         HON. MICHAEL P. FORBES

                              of new york

                    in the house of representatives

                         Tuesday, May 12, 1998

  Mr. FORBES. Mr. Speaker, I rise today in recognition of May 12, 1998, 
as ``International Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 
Awareness Day.'' In doing so, I would like to put a human face to and 
share the story of an individual in my district who suffers from this 
illness.
  I have met with numerous constituents in my district who are 
afflicted with CFIDS. Many of these people are waging a valiant battle 
to bring more public attention and resources to bear on the search for 
a cure. I would like to recognize in particular the efforts of David 
Samelman, Marcella Feinsod and the Long Island CFIDS Association, and 
even Marcella's son, Brandon, who is working in his school to raise 
public awareness of CFIDS.
  Medical professionals have not been able to cure this mysterious 
ailment. Others do not understand and have often misinterpreted CFIDS 
as a form of depression. The National Institutes of Health (NIH) and 
the Centers for Disease Control (CDC) have been investigating CFIDS for 
years and unfortunately have yet to find an effective treatment. 
Numerous studies show that biochemically, endo- crinologically, 
neurologically, neuropsy- chiatrically, and immunologically CFIDS is a 
separate and distinct disorder from normal depression. It is 
heartbreaking to see our parents, neighbors, spouses and children, or 
anyone suffer through the enduring pain and pervasive weakness of 
CFIDS, with no remedy currently in sight.
  One CFIDS sufferer is George Raisglid of East Setauket, NY. George is 
a retiree and a Holocaust survivor who in 1987 suddenly took ill during 
a trip to Israel. After months of tests and experiencing clogged ears, 
sore throat, insomnia, poor tolerance to extreme temperatures and loss 
of short-term memory, he finally found a doctor who was able to provide 
treatment for the individual symptoms but knew of no remedy for his 
general malaise.
  George later saw an article in the local newspaper for a support 
group for CFIDS sufferers, and at the meeting learned that most local 
physicians, not being familiar with the disease, were unsympathetic to 
patients' problems. In fact, they often refused to acknowledge that the 
disease existed. Ten years and thousands of dollars later, George was 
still ill and had to retire early because of his condition. Today 
George has good and bad days, and he has expressed to me his sincere 
desire to increase awareness and funding for CFIDS research to help 
others like him.
  There are an estimated two to three million people in the United 
States like George Raisglid suffering from CFIDS. In my home area of 
Eastern Long Island, this cruel disease has stricken a 
disproportionately high number of people. Experts say an estimated 
2,000 cases of CFIDS have been diagnosed throughout Suffolk County. 
Unfortunately this number may be understated because this disease is 
often mistaken for a variety of other afflictions.
  I am committed to supporting every effort to eradicate this horrible 
malady, and helping those who suffer its disabling effects. The reality 
is that doctors and scientists have few answers to this mysterious 
disease. Though still often treated as depression, researchers have 
unearthed evidence of subtle abnormalities in the immune systems of 
CFIDS sufferers. This has led to widely held consensus that Chronic 
Fatigue is the manifestation of an immune system that has turned on the 
body that it is supposed to protect.
  The National Institute of Allergy and Infectious Diseases has assured 
me that it is also committed to supporting research that will lead to 
the discovery of the cause of CFIDS. Just as importantly, we must 
emphasize the need to develop effective methods for diagnosing, 
treating and preventing this crippling disorder. In Fiscal Year 1987 
research for the disease was funded at $780,000. In FY 1997, CFIDS 
funding was $7 million, a ten-fold increase over ten years. While this 
increase is admirable, it still does not compare with $26 million spent 
annually on Parkinson's disease research or $1 billion spent annually 
on both cancer and heart disease.
  Mr. Speaker, I ask my colleagues in the House of Representatives to 
join me in recognizing today as ``International Chronic Fatigue Immune 
Dysfunction Syndrome Awareness Day.'' Only through raising recognition 
of this mysterious ailment can we hope to discover a cure and attain 
some measure of relief for those who are caught in its exhausting grip.

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