[Congressional Record Volume 143, Number 63 (Wednesday, May 14, 1997)]
[House]
[Page H2617]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




INTERNATIONAL CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME AWARENESS DAY

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentleman from New York [Mr. Forbes] is recognized for 5 minutes.
  Mr. FORBES. Mr. Speaker, I rise today again to ask my colleagues to 
join with me in recognizing that Monday, May 12, was International 
Chronic Fatigue Immune Dysfunction Syndrome Awareness Day, a long name 
for a disease that is relatively new and still unknown to too many 
physicians around the world.
  Last night on this floor I provided a brief overview of the problems 
facing chronic fatigue syndrome, or CFIDS, and the dilemma that this 
debilitating disease poses for so many people. Now I would like to put 
more of a human face on this malady and share a few of the struggles of 
some of the individuals that I am privileged to represent on Long 
Island, a place that has an inordinate number of cases of chronic 
fatigue syndrome.
  Mr. Speaker, as I stated last night, we have several individuals in 
our area of Long Island that do have an inordinate number of cases in 
that region. It is absolutely heartbreaking for me to talk with parents 
and children and neighbors and spouses, too many children, frankly, who 
suffer from the enduring pain and pervasive weakness brought on by 
chronic fatigue syndrome.
  As Members can imagine, to see vibrant, energetic people stricken 
with a mysterious ailment that medical professionals frankly have not 
been able to figure out how they can cure, and too many, too many 
doctors believe does not exist or may be caused by some other malady is 
sad and it is confounding.
  It makes these people who are suffering from this disease very, very 
angry, frankly, because it is enough to know that you are bone tired, 
that every joint in your body hurts, that you cannot lift your head off 
the pillow anymore, and to be basically dismissed by supposedly 
intelligent, well-trained physicians that it is depression, or it is 
something you just need to snap out of.
  When we talk to these folks, we understand the very important dilemma 
that they face. I refer, for example, to Alison Burke, who comes from 
Coram, Long Island. She is a mother with two children, and she has been 
stricken with chronic fatigue syndrome. Unfortunately, the high 
preponderance of these cases actually affect women who are in their 
thirties, and too many children, as I said previously.
  Before chronic fatigue syndrome Alison was an energetic mom with two 
children. She worked 30 hours a week for a dentist. Then one day she 
woke up feeling absolutely ill, like she had the flu. She went to the 
doctor and she had some tests taken, and they all came back normal. He 
told her she was fine, and he basically said, just snap out of it. Get 
over your depression. At this point she was just so very weak she could 
not even walk to the bathroom.
  Instead of getting better, her symptoms seemed to get worse. It took 
all of her energy to just get out of bed and try to take care of her 2-
year-old child. Her friends and her family even were getting angry and 
annoyed at her, wondering, why are you constantly bedridden? Why are 
you so tired? Why can you not go on with your normal duties?
  Finally she found out that chronic fatigue syndrome might, and this 
was through a newspaper article, might just be the cause. She began 
attending group meetings, and from those meetings found a doctor, one 
of the rare doctors, frankly, who understood this disease.

                              {time}  1315

  Barry Feinsod of Holtsville, Long Island, his wife was also stricken 
with chronic fatigue syndrome, and he wrote to me to say that for 6 
years his wife has been unable to work. They have gone from doctor to 
doctor. She cannot even perform some of the most basic duties 
associated with living a normal life. It has destroyed the family's 
expectations and dreams for the future, and it has really posed a 
vexing problem.
  Jeannette Crocken of Medford, Long Island, wrote me about her son 
Jason, who is also afflicted with chronic fatigue syndrome at the age 
of 10. Doctors did not know what was wrong, and, again, they spent 2 
years going from physician to physician and testing that chronic 
fatigue was maybe the possibility. He has lost his hair, muscle pain, 
sore throat. It is this kind of vexing dilemma, Mr. Speaker, that 
really poses a great problem for the people affected and afflicted by 
this disease.
  We spend tens of millions of dollars in very good research over at 
the National Institutes of Health for all kinds of diseases, hundreds 
of millions of dollars. Yet chronic fatigue syndrome has only gotten a 
paltry $5 million, and there are well over, I would suggest, 2 million 
people, I have been told; and the number may be actually three times 
that who have just had the disease but not been diagnosed.
  We need to do a better job of researching the symptoms. We know only 
that it sends the immune system into overdrive, Mr. Speaker. When we 
see the immune system being shut down, as it is by HIV positive and 
AIDS, we have to step forward as a nation. We need to do likewise and 
double the funding for chronic fatigue syndrome.

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