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"I went from 1st grade through a PhD with CFIDS. The keys are creative coping and unusual approaches to studying."

— Longterm CFIDS patient

photo of a boy lying on a bed, with his Mom's hand on his forehead
Resources for Children & Youth with CFIDS/ME PDF Print E-mail

There is much information available to help families with children and youth who have CFS/CFIDS/ME.  We have listed here some of the best resources, arranged by topic.  Each of these links will open in a new window so that you can easily return to this page to follow other links.

Some documents in this section may require Adobe Reader, which is available as a free download, to be installed on your computer.

Editor's note:  While these links were working at the time of publishing, other organizations may change their sites from time to time.  If you find a link on this page that is not working, or is leading to a different page than indicated, please contact us.

Understanding CFS/CFIDS/ME in youth—General information

Diagnosis of CFIDS in youth

Until 2006 there were no internationally accepted criteria for CFS/CFIDS in children and adolescents. For adults there were several sets of criteria, somewhat competing, but with enough overlap to provide fairly reliable bases for diagnosis. The criteria for ME were somewhat more narrow but again with a fair amount of overlap with CFS. Without generally accepted criteria research studies can not be comparable so it was vital that there be such criteria for children and young adolescents— in whom the illness varies somewhat from that in adults. In 2006 Leonard Jason, PhD, together with a committee made up of physicians and researchers from several countries, published such pediatric criteria as a case definition, along with questionnaires for children and for parents to help arrive at a diagnosis. This was a very important step.

Fact Sheet

Impact of CFIDS on child and family

Coping in School

Educational Rights:

For Kids:

For Parents:

  • Educating the Child with CFS —Newsletter published by the New Jersey Chronic Fatigue Syndrome Association, Inc.

  • Parents Share Ideas For Educational Planning —Fibromyalgia Support Network, original article from The Pediatric Network

  • The Emotions of Parenting a Child with CFS —Fibromyalgia Support Network, original article from The Pediatric Network

  • Youth: Tips for Parents—CFIDS Association of America

  • A Parent's Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction, by David S Bell, Bonnie Floyd, Jean Pollard, and Mary Robinson (Hardcover - Mar 8, 1999)

  • Harnessing the Wind: Chronic Fatigue Syndrome and My Son, by Shanon McQuown (Paperback - May 17, 2005)

For Teachers:

For Nurses:

Social Aspects

More resources

A Son's Road to Recovery

Depression and a Success Story

Developmental Issues in Adolescents with CFIDS - A Parent's Thoughts

Planning Ahead for Next School Year

Teenage CFIDS - A Personal Story


 
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