National Fibromyalgia Partnership, Inc. • www.fmpartnership.org
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Resources For Young People And Their Parents |
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Pediatric Chronic Fatigue Syndrome. [book] Edited by Kenny L. De Meirleir, MD, PhD—Brussels, Belgium; Neil R. McGregor, BDS, MDSc, PhD—Victoria, Australia); and Elke L.S. Van Hoof, PhD, Clin Psych—Brussels, Belgium (Haworth Press, 2006). This valuable new resource considers the medical and psychosocial impact that chronic fatigue syndrome (CFS) has on children and adolescents. It also provides criteria for the first-time diagnosis of pediatric CFS as developed by the International Association of Chronic Fatigue Syndrome Pediatric Case Definition Working Group. Treatment guidelines are also offered. [Offered in $78 hardbound and $36 softbound editions. Order online from www.HaworthPress.com, or phone (800) 429-6784.]A Parents' Guide to CFIDS: How To Be An Advocate For Your Child with Chronic Fatigue Immune Dysfunction Syndrome [book], by David S. Bell, MD, FAAP; Mary Z. Robinson, MDEd; Jean Pollard, AS; Tom Robinson, MS, CAS; and Bonnie Floyd, MA. Binghamton, NY: The Haworth Medical Press, 1999. Phone: (800) HAWORTH. Although written for the parents of children with CFIDS, this book has a great deal of pertinent information for fibromyalgia, too. Includes chapters on family life, social life, coping, and relationships with doctors, as well as an excellent section on school and education. Also contains a comprehensive resource section in the back with the names/addresses of organizations to contact and explanations of the legislation affecting sick and disabled children. NICHY--National Information Center For Children And Youth With Disabilities: An information clearinghouse which provides disability information and has extensive and easy-to-understand resource listings. Write: P.O. Box 1492, Washington, DC 20013-1492 • Phone: (800) 695-0285 • Website: http://www.nichcy.org/ • Email: nichcy@aed.org
Websites http://home.bluecrab.org/~health For Parents of Sick and Worn-out Children. Covers fibromyalgia, CFS/CFIDS, Lyme disease, and several other chronic conditions.
http://www.pediatricnetwork.org/ New online website for fibromyalgia, CFS/CFIDS, and orthostatic intolerance. Offers online newsletter.
http://cda.dummies.com/WileyCDA/DummiesArticle/id-1541.html "Treating A Child With Fibromyalgia"--Adapted from Dummies.com
http://mwilliamson.com/children.htm Excerpt from author Miryam Williamson's book, Fibromyalgia: A Comprehensive Approach
http://members.aol.com/fibroworld/juvFM1.htm Juvenile Fibromyalgia and Chronic Fatigue Syndrome--offers research abstracts
http://groups.msn.com/FIBROKIDS/_homepage.msnw?pgmarket=en-us FIBRO KIDS
www.ourfm-cfidsworld.org/html/children_s_issues.html Our FM-CFIDS World--a host of resources for children with FM & CFS/CFIDS
www.geocities.com/HotSprings/Spa/3579 Website of a young person with fibromyalgia and CFS/CFIDS
www.abilityinfo.com/category/student.html Abilityinfo.com--National and International Student Resources
http://www.disabledstudents.org/ National Disabled Students Union--a national, cross-disability, student organization dedicated to social justice
www.esmerel.org/misc/children.htm Esmerel's --a collection of disability sites for children
Covering Kids & Families--a national program
www.finaid.org/otheraid/disabled.phtml Information about scholarships and fellowships (including loans, scholarships, military aid, and savings) for students with disabilities
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