[Congressional Record Volume 143, Number 62 (Tuesday, May 13, 1997)]
[House]
[Pages H2569-H2570]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME

  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 to ask my colleagues to join 
with me in recognizing that yesterday, Monday, May 12, was 
International Chronic Fatigue Immune Dysfunction Syndrome Awareness 
Day.
  We in the Congress must realize the need to heighten public awareness 
of this most debilitating, yet still largely ignored, disease that 
caring medical experts believe strikes a conservative number of 
Americans, 2 to 5 million annually, and an estimated 11,000 individuals 
in New York, New Jersey, and Connecticut.
  First brought to the public's attention back in 1984 during an 
outbreak at Lake Tahoe, NV, the number of chronic fatigue sufferers has 
grown dramatically. That is due, in part, because more physicians are 
being trained to identify the symptoms of chronic fatigue syndrome and, 
in addition, some physicians have understood that chronic fatigue 
syndrome and its symptoms are better understood today than they have 
been in the past.
  Unfortunately, a shocking number of physicians still believe that the 
disease really is not a disease such as this, but it is depression. 
They often tell their patients to just snap out of it. This has really 
added a burden on a lot of Americans, particularly those who reside in 
my part of the world, on Long Island, and we have an unbelievable 
number of chronic fatigue syndrome sufferers.
  Over the last 2 years, I have met with many of these individuals who 
are really waging a valiant battle, not only to try to educate more and 
more physicians that this is a very real disease, but also to bring 
greater public awareness and resources to the research of this malady 
and to find a cure. It is absolutely heartbreaking to see parents and 
neighbors, spouses and children, or anyone suffering from the enduring 
pain and pervasive weakness of chronic fatigue, to see vibrant, 
energetic people all of a sudden stricken with a mysterious ailment 
that medical professionals cannot cure and, unfortunately, too many 
others think it is something else or choose to ignore this chronic 
fatigue syndrome.
  I am particularly shocked that here in the United States, where this 
disease has been known since 1984, we are spending a paltry $5 million 
annually to try to figure out where this disease comes from and 
specifically how can we treat it. I would also reference the fact that 
while there are very few successful treatments for this terrible 
disease, those that doctors do employ quite honestly have a marginal 
effectiveness. For reasons that researchers still do not understand, 
chronic fatigue syndrome is diagnosed mostly in white women, typically 
in their 30's, though now there are a growing number of children who 
have been identified with having chronic fatigue syndrome.
  In my home area on eastern Long Island, this cruel disease has 
stricken, as I said earlier, a disproportionate number of people. There 
are some 2,000 cases that have been identified, but I would suggest 
that the number is probably three times that.
  Mr. Speaker, I yield at this time, if I could, to the gentleman from 
New York [Mr. Lazio], my good friend and colleague from Long Island who 
has some personal experience with this dreaded disease.
  Mr. LAZIO of New York. Mr. Speaker, I want to congratulate the 
gentleman from New York [Mr. Forbes] on taking this time out to help 
build an awareness across our country of the struggles that families 
and individuals suffering with chronic fatigue syndrome are going 
through.
  As the gentleman had remarked, it is particularly hurtful when people 
who do not understand the syndrome mock their ailment or the illness 
because of a lack of information about this. Of course this also has a 
devastating effect on the children of some of the caregivers who have 
Chronic Fatigue Syndrome. It is a very difficult problem.
  I have to agree with the gentleman that we need to marshal our public 
and private resources to begin the process of overcoming this terrible 
disease. Of

[[Page H2570]]

course I have been touched with this in my own family, as the gentleman 
had mentioned.
  I want to thank the gentleman for his interest and for allowing me a 
few minutes to align myself and associate myself with the gentleman's 
interests in battling this terrible disease.
  Mr. FORBES. Mr. Speaker, I thank the gentleman. I would like to 
recognize my other colleagues from Long Island: the gentleman from New 
York [Mr. Ackerman], the gentleman from New York [Mr. King], and the 
gentlewoman from New York [Mrs. McCarthy], who equally have been 
working on this issue. We will be taking this floor several days this 
week to talk in extended terms about the chronic fatigue syndrome. It 
is a serious illness and one that we as a nation need to deal with in a 
more aggressive manner.
  Mr. ACKERMAN. Mr. Speaker. I rise today to acknowledge Annual 
International Awareness Day for Chronic Immunological and Neurological 
Diseases. These illnesses are among the fastest growing health concerns 
in our country and constitute a large and neglected area in medical 
research. Chronic fatigue immune dysfunction syndrome [CFIDS] and 
fibromyalgia syndrome [FMS] are illnesses which affect at least a half 
million American adults and children. It is imperative that increased 
funding for research for CFIDS and FMS be approved in a timely fashion.
  CFIDS is a serious and complex illness that affects nearly every 
aspect of an individual's life. It is characterized by incapacitating 
fatigue, neurological problems and numerous other symptoms. 
Approximately 1,000 individuals in Suffolk County alone suffer from 
this disease. One of my constituents, named Anthony Wasneuski, was 
diagnosed with chronic fatigue syndrome in 1990. Mr. Wasneuski was a 
furniture salesman in New York City. He was also an accomplished artist 
who received a scholarship from the Brooklyn Museum. Unfortunately, 
because of this illness he must now remain at home, and now has 
difficulty even signing his own name. Mr. Wasneuski's story represents 
a real life experience behind the cold numbers and statistics of this 
debilitating disease.
  Fibromyalgia syndrome is a chronic, widespread musculoskeletal pain 
and fatigue disorder for which the cause is unknown. Research studies 
have indicated that approximately 2 percent of the general population 
are afflicted with FMS. The majority of FMS patients are female and 
symptoms may begin in young, school-aged children. Tragically, it takes 
approximately 3 years and costs thousands of dollars just to receive a 
diagnosis of the disease.
  Chronic fatigue immune dysfunction system and fibromyalgia clearly 
affect people from all walks of life. As the 1998 appropriations 
process gets underway, we need to focus upon ways that we can provide 
more research funding for these debilitating conditions.
  Mrs. McCarthy of New York. Mr. Speaker, I would also like to take the 
opportunity to thank my colleague, Mr. Forbes, for organizing this 
opportunity to speak out on chronic fatigue and immune dysfunction 
syndrome [CFIDS].
  I would like to take this opportunity to talk about a little known 
but devastating disease: CFIDS. Once dismissed by doctors, this 
syndrome is now being taken seriously. Studies vary on how many people 
are affected by this disease but a conservative estimate is about 
390,000 adult cases in the United States.
  In the tristate area of New York, New Jersey, and Connecticut, 
approximately 4,094 to 11,000 people have CFIDS.
  CFIDS is truly a terrible disease. It ranges in severity from 
patients who are just able to maintain a job, and may have to give up 
other aspects of their lives, to those who are bedridden and unable to 
take care of themselves.
  While CFIDS traditionally affects young women in the prime of their 
lives, a growing number of children appear to have CFIDS. The fact that 
this disease is striking young children is particularly disturbing. 
This disabling illness will have a disastrous effect on the economy by 
preventing young children from becoming income-earning, tax-paying 
citizens.
  While CFIDS is not known to be a killer, it has no proven treatment 
and no cure. Moreover, it is difficult and, unfortunately, nearly 
impossible to get a timely and correct diagnosis.
  Because patients go to many different doctors to find a diagnosis, 
they often are subjected to unnecessary, costly, and potentially 
harmful treatments.
  Mr. Speaker, this must change. Doctors, medical professionals, and 
those who are entering the medical fields must be educated about CFIDS. 
Delaying diagnosis is not only harmful to the patient, it is not cost 
effective. Treating individuals early in the disease process offers 
more promise for return to normal and productive living.

                          ____________________