New Jersey Conference Spotlights
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
Who Will Speak for the
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"
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
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.