National Fibromyalgia Partnership, Inc.

Resources On Fibromyalgia And Related Conditions For Young People And Their Parents

 

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.

 

Low Impact Aerobic Exercise: Forty-minute videotape produced by Lynn M. Rusy, M.D., Associate Professor of Anesthesiology at the Medical College of Wisconsin and Associate Director of the Jane B. Pettit Pain Management Center at the Children’s Hospital of Wisconsin. This tape is specifically designed for kids and teens and offers thorough warm-up, aerobic, and cool-down exercise sessions. Included during each of the sessions are three levels of intensity--low, medium, and high. While paying close attention to the participants’ heart rate, the exercise program offers a full workout with easy-to-learn exercise routines. Price: $24.95 plus $5.00 shipping and handling. To order, contact: maxiShare, P.O. Box 2041, Milwaukee, WI 53201. The product catalog # is 204001. Visa, Mastercard, or personal check/money order accepted.

 

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.

Website: www.nichcy.org

Email: nichcy@aed.org

 

HEATH--National Clearinghouse For People With Disabilities Pursuing Education Or Training After High School

Website: www.acenet.edu

Email: heath@ace.nche.edu

 

Websites

 

The National CFIDS Foundatjon--Guidelines for Schools: Understanding and Accommodating CFIDS/FMS, Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia Syndrome

 http://www.ncf-net.org/general/guidlines.htm

 

For Parents of Sick and Worn-out Children. Covers fibromyalgia, CFS/CFIDS, Lyme disease, and several other chronic conditions.

http://home.bluecrab.org/~health

 

Information and resources for teens with fibromyalgia and CFS/CFIDS

http://pages.prodigy.net/turnip/childrenandteens.htm

 

New online website for fibromyalgia, CFS/CFIDS, and orthostatic intolerance. Offers online newsletter.

www.pediatricnetwork.org

 

Juvenile Fibromyalgia and Chronic Fatigue Syndrome--includes several links

http://members.aol.com/fibroworld/juvFM.htm

 

FIBRO KIDS

http://groups.msn.com/FIBROKIDS/_homepage.msnw?pgmarket=en-us

 

Our FM-CFIDS World--a host of resources for children with FM & CFS/CFIDS

www.ourfm-cfidsworld.org/html/children_s_issues.html

 

FibroTalk.org--includes many links for children with FM

www.fibrotalk.org/pages/Fibromyalgia/Children_With_Fibromyalgia

 

Website of a young person with fibromyalgia and CFS/CFIDS

www.geocities.com/HotSprings/Spa/3579

 

Fibromyalgia: A Mom's Perspective

www.angelfire.com/on/teenfms/mymom.html

 

Abilityinfo.com--National and International Student Resources

www.abilityinfo.com/category/student.html

 

National Disabled Students Union--a national, cross-disability, student organization dedicated to social justice

www.disabledstudents.org

 

Esmerel's --a collection of disability sites for children

www.esmerel.org/misc/children.htm

 

Covering Kids & Families--a national program

www.coveringkids.org

 

Chats available at:

www.news2mail.com/alt/education/disabled.html -- education

www.news2mail.com/alt/education/home-school/disabilities.html -- home schooling

 

Additional information for young people with fibromyalgia is available in the National Fibromyalgia Partnership's "Fibromyalgia In Young People" packet, available in our print catalog and in our Online Store