Congress Learns About YPWCs' Problems at 1997 Congressional Briefings

By Vicki L. Carpman

Originally published in Youth Allied By 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 it!

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 friends.

NIH Grantee Searches for YPWCs
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 CFIDS.

Two years into the study, Dr. Jordan has 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 flu" myth!

This study follows up on one funded with $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 director.

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 with 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."

Corrective Action
The staffers learned that these problems could 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.