Congress Learns About YPWCs'
Problems at 1997
By Vicki L.
Originally published in Youth Allied
CFIDS, Summer 1997
How do you educate
a member of
Congress about pediatric CFIDS? (Besides the tons of letters we all send them
each year, I mean!) The easiest way is to simply tell them about
That's exactly what The CFIDS Association
of America did at the third annual CFIDS Congressional Briefings on May 16. Two
of the five presenters talked about the problems that children and adolescents
with CFIDS have at school, the doctor's office and with their
NIH Grantee Searches for
Although many CFIDS
studies have been done in the last decade, most have been done on adults. As a
result, little is known about how the disease affects children and adolescents,
said Karen Jordan, PhD. With a $2 million, five-year grant from the National
Institutes of Health, Dr. Jordan and a DePaul University research team will
investigate how many people - including children and adolescents - have
Two years into the study, Dr. Jordan
found that 0.57% of the under-18 population in Chicago has symptoms of CFIDS,
although medical work-ups have not yet been done. (This rate will undoubtedly
drop after medical examinations, which will rule out other possible causes of
symptoms, are done.) Most interesting, Dr. Jordan said, is the kids' racial
distribution: 49% Hispanic, 18% African-American, 18% European-American, 4%
multi-racial, 2% Asian-American and 2% Native American. Not only are the kids'
demographics different than the adults', but they definitely dispel the "yuppie
This study follows up on one funded
$22,000 by The CFIDS Association of America in 1993. Dr. Jordan's colleague
Leonard Jason, PhD called randomly selected Chicago residents and asked whether
they had symptoms of CFIDS and then arranged free medical work-ups to confirm
the diagnosis. When he found a rate that translated to approximately 400,000
American adult CFIDS cases, he knew a follow-up study was needed, and looked to
the National Institutes of Health (NIH) for financial support. The $2 million
grant was awarded in 1995 and he appointed Dr. Jordan project
A Dream Killer
Karen Lang, a person with CFIDS (PWC) and mother of
17-year-old Calen, who got sick with CFIDS in 1990, brought Dr. Jordan's facts
and figures to life for the staffers.
Calen and his family have struggled
his school district ever since he first became ill. Although there are two
federal laws on the books (IDEA and Section 504 of the Rehabilitation Act) which
protect the right of a disabled child to receive a free and equal education, the
Langs have had to fight continually with Calen's school district to get any type
of help, such as home tutoring during relapses.
This situation should not exist, said
Karen, especially when there are many simple, no-cost modifications which can
ensure that children with CFIDS are prepared for their futures.
"This disease is a dream killer for
children." Karen told the staffers. "Not only does it shatter their childhood
dreams, it destroys their dreams for the future, what they will do, and who they
will become as adults."
The staffers learned that these problems
be helped, in part, by a strong federal response to pediatric CFIDS. The
staffers at the Briefings heard this message loud and clear and, hopefully their
bosses will take action to make this happen. Among other things, the Association
asked Congress to advise the National Institutes of Health to make pediatric
CFIDS a priority area for research grants and to direct the Centers for Disease
Control to study and better define pediatric CFIDS.