New Jersey Conference Spotlights YPWCs

By Beth Warren

Originally published in Youth Allied By CFIDS, Summer 1997

The second annual New Jersey Conference on CFIDS, titled "The Many Faces of Chronic Fatigue Syndrome," was a huge success. The conference was held April 27 at Robert Wood Johnson Hospital in New Brunswick, N.J. It was co-sponsored by the New Jersey Chronic Fatigue Syndrome Association (NJCFSA) and the Community Education Department of Robert Wood Johnson Hospital.

Who Will Speak for the Kids?
Of note to young people with CFIDS (YPWCs) is that there was a large focus on pediatrics at the conference this year. Dr. James Oleske, Director of Allergy, Immunology and Infectious Diseases at the University of Medicine and Dentistry of New Jersey, was a keynote speaker. His speech was titled "CFS and Pediatrics: Who will Speak for the Young?" Dr. Oleske also held a "CFIDS Kids Workshop," where there was an informal question-and-answer session.

Dr. Oleske stated that YPWCs may frequently have persistent or reactivated Epstein-Barr virus (EBV) as a factor in their illness. YPWCs appear to have a better prognosis for recovery than CFIDS patients who develop symptoms after 25 years of age, he said. Dr. Oleske also said that youth and adults with CFIDS have similar symptoms. These can prevent YPWCs from participating in school activities and cause some YPWCs to become fully disabled. While there is no specific treatment for CFIDS, youth, like adults, can be helped to cope and reduce some symptoms with medications, good nutrition, pain and discomfort management and, most importantly, understanding and support from their families and friends.

We Want "Moore" Advocacy!
On the panel with Dr. Oleske at the workshop was CFIDS Youth Alliance (CYA) chairman Rebecca Moore. Rebecca spoke about advocacy, which was inspiring to all. "Each of you is uniquely qualified to help yourself — or your family member or your patients with CFIDS — get well again, because each of you can tell your story," she said. "People can relate to your personal stories. They may not know what CFIDS is. They may not know much about research. But if you ask them to understand that you, a person with a name, a face and a family, have an awful disease and want to be well again… that they can grasp! And that’s all we ask them to understand: that real people get CFIDS and need research towards a cure." She’s right!

Much of the discussion at the workshop was on increasing awareness of CFIDS, especially among schools. NJCFSA president Jonathan Sterling attended the workshop and was involved in much of the talk about educating people about CFIDS. As a former school principal, Mr. Sterling is especially interested in helping educate schools. Already one milestone has been passed: New Jersey Governor Christie Whitman proclaimed the month of May to be CFIDS Awareness Month in New Jersey.

A Group for Kids Only
CYA co-founder Sharon Walk was also supposed to be on the panel with Dr. Oleske, but she was too ill to attend so her speech was read for her. "What I wanted to talk about today is a new group that is starting in New Jersey just for kids with CFIDS and their families. We are going to be starting a support group that is only for kids; at the same time in a different room there will be a meeting for parents," Sharon wrote. The first meeting was held on May 31 at Robert Wood Johnson Hospital in New Brunswick.

Talking to people who understood what it was like to live with CFIDS felt so good. I’d been talking with other YPWCs by e-mail, telephone and "snail mail," but it felt so much better to talk with them in real life, as I call it.