Author: Pat

The CFIDS Chronicle article: Pediatric CFS,

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ed with kind permission of the CFIDS Association of America

Since its formation in 1995, the New Jersey Chronic Fatigue Syndrome Association has worked hard to improve the lives of children afflicted with CFS. Toward that end, the Youth Education Committee was founded by NJCFSA vice president, Betty McConnell.

As one of the founding members of NJCFSA, she was the only board member at the time who not only had CFS herself but was raising a child with the illness. Betty said “I became an advocate for my son Scott in 1987 so it was only natural that I would become an advocate for all children with CFS in New Jersey.

Betty is most proud of writing and establishing the NJCFSA Scholarship. The $1,000 Scholarship is awarded to graduating seniors with CFS in New Jersey who are continuing their education in a college or technical school. The scholarship mailing to every high school in New Jersey has become an outstanding awareness project in itself, but it is only one part of the NJCFSA’s varied programs for youth.

As part of her work on the committee, Betty has been instrumental in targeting organizations and events that can have a significant impact on increasing awareness and understanding of CFS in kids. Betty was kind enough to grant this interview on the activities of the youth education committee.

What is the Youth Education Committee?
The youth education committee is comprised of NJCFSA members who are advocates for children with CFS. Our main purpose is to offer support to parents and their CFS diagnosed child or adolescent and to provide them with educational materials on pediatric CFS. Our committee is also dedicated to increasing awareness of CFS in children and disseminating reliable information to schools, pediatricians and the general public on the seriousness of chronic fatigue syndrome in young people.

How does the NJCFSA Youth Education Committee help parents and children with CFS?

Our committee has put together a pediatric education package that contains numerous articles on pediatric CFS. The package includes a reading list of books on pediatric CFS, a resource list of websites and newsletters about CFS, a checklist for school nurses, medical journal articles on pediatric CFS and a collection of newspaper articles that have featured children and adolescents with CFS. We have also included many articles on coping skills for both parents and children. Additionally NJCFSA maintains a physician referral list.

What programs have the Youth Education Committee participated in?

Since 1998, we have participated in many pediatric education conferences and conventions. We have exhibited at the National Association of School Nurses Convention. We regularly exhibit at the New Jersey Education Association’s (NJEA) annual Convention. Twice we have conducted a workshop for school administrators, school nurses, teachers and child study team members at the NJEA Convention. We have also exhibited at the New Jersey Pediatric Nurse Practitioner’s Association conference, the New Jersey Nurses Association and the New Jersey League of Nursing Association’s annual conferences and most recently at the New Jersey School Counselor’s annual conference. These conventions and conferences allow us the opportunity to reach a wide range of professionals—medical providers and educators—whose decisions impact the daily lives of kids with CFS.
What other activities does the Youth Education Committee participate in?

For CFS Awareness Day 2003, we mailed pediatric education packages to Dr. William L. Librera, the Commissioner of Education for the state of New Jersey, to the Superintendent of Schools for each County in New Jersey, to the members of the New Jersey State Special Education Advisory Council and to the five catholic dioceses in New Jersey for its schools. As a result of this mailing, we received many inquires for speakers and exhibitions.

What does the Youth Education Committee have planned for Awareness Day 2004?

Our main goal for 2004 is to educate the state’s pediatricians. Utilizing the American Academy of Pediatrics New Jersey chapter website, we found the names and addresses of the Executive Council Members, the Counselors, Standing Committee Members, Advisory Committee Members and the Members of their Task Forces. Our intention is to assemble sixty pediatric education packages and send them to this select group. Our pediatric education package will include copies of A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome published by the New Jersey Department of Health and Senior Services, the Academy of Medicine of New Jersey and the University of Medicine and Dentistry of New Jersey. We hope that these leading pediatricians of New Jersey will share the information with their colleagues.

Who are the other members of the Youth Education Committee?

Committee member Peg Walk has been an advocate for pediatric CFS since 1990. Before becoming ill with CFS, Peg was a computer programmer with a masters degree in mathematics. Peg also taught elementary school math and computers. Peg’s interest in pediatric CFS came as a result of having a daughter with CFS. Peg’s daughter Sharon started the first newsletter and pen pal club for children with CFS in 1990. Peg helped her daughter with her newsletter and when the newsletter reached over 100 members they contacted the CFIDS Association of America (CAA) for help. The CAA took over this newsletter and formed the CFIDS Association of America’s Youth Alliance. Peg has been the support group leader for Morris County for many years. She has manned our exhibit tables at conference and conventions. Peg can be seen at NJCFSA’s spring and fall conferences handing out articles on pediatric CFS. NJCFSA recently elected Peg to its board of trustees.

Committee member Jon Sterling has been an advocate for children with CFS since 1992. As one of the founding members of NJCFSA and our first President, his interest with pediatric CFS was a natural consequence of his career as a school principal. Jon is a talented speaker and has given many lectures on behalf of children with CFS. Twice he traveled to Atlantic City to speak at the NJEA Convention. He recently exhibited at the New Jersey School Counselors Convention and gave a talk to teachers at a school in Passaic County, New Jersey. His understanding of the educational system and the accommodations necessary for an appropriate education for the CFS child is exceptional. Jon was a support group leader for Bergen County for several years, is Past President of NJCFSA, former Treasurer of NJCFSA and serves on the federal CFS advisory committee to the U.S. Secretary of Health and is Chairman of the Board of directors for the CFIDS Association of America.

What other NJCFSA members and organizations have helped our committee?

Other NJCFSA members who have assisted our Youth Education Committee with projects and exhibiting are Ted Nilson, Jackie Niederle, Laura and Beth Warren, Stephanie Habermann, Teresa Johnson, Sheila Rosen, Janice Frank, James Glenn, Sharon Walk and Lorraine Steefel.

Our committee is also grateful to the CFIDS Association of America for providing educational materials for each project. We also acknowledge the assistance of the Pediatric Network website founded by Rebecca Moore and Mary Robinson for the many educational articles they feature on their website. Their website is invaluable to children with CFS. (www.pediatricnetwork.org)

What Doctors have helped the Youth Education Committee?

In 1999, Dr. James M. Oleske, M.D., MPH, gave a pediatric CFS education lecture to teachers and school nurses at the New Jersey Education Association’s annual convention in Atlantic City. Dr. Oleske is Francis-Xavier Bognoud Professor of Pediatrics, Department of Pediatrics, UMDNJ-New Jersey Medical School, Newark, N.J. Dr. Oleske is NJCFSA’s medical advisor and is an inspiration to all who work on behalf of children with CFS in New Jersey.

In 2002, Dr. Malcolm Schwartz gave an excellent presentation on pediatric Chronic Fatigue Syndrome at the New Jersey Education Association’s annual convention in Atlantic City. His lecture was well received by the teachers and school nurses in attendance. Dr. Schwartz is Chief of Pediatric Endocrinology at Monmouth Medical Center.

What is the most gratifying aspect of the work of the Youth Education Committee?

If all the exhibiting, education packages, scholarship program and speaking engagements make the lives of children with Chronic Fatigue Syndrome and their families easier, then we have accomplished our goal.