When your child persistently suffers from pain, fatigue, heat and exercise intolerance, dizziness, nausea, 'cognitive fog,' and other symptoms of Chronic Fatigue and related syndromes, you as a parent have special kinds of problems. This page is devoted to developing and pointing toward help on these problems.Experiences of Sick and Worn-Out Children and Their Families.Children who have these kinds of problems are often overlooked, thought to be depressed, considered school-avoidant or irresponsible, lazy, lacking ambition or energy, or self-centered. Why Children with CFS Are Often Overlooked explains why this happens.
Jane Colby of Britain's "Action for M.E." believes that children with M.E. (CFS) have rights to be treated with dignity, respect and humanity. She explains these rights in The Children's Charter. Another important document on the Colby pages is the Guidelines for Schools. These guidelines are written for British schools, but parents will find them helpful in understanding what their schools should be doing no matter where they live.
Other Topic areas are:
This page was started in November, 1995. It keeps getting out of date, because I don't have enough time to put into it. Now in December 1997 I am starting to work on it again (first times since October 1996). Please let me know of stuff that should be on this page!
If you are a parent of a child or adolescent who has CFS/ME or similar problems, send me an e-mail (franka@skipjack.bluecrab.org). I am collecting names and e-mail addresses, perhaps eventually to start a newsletter. I've been saying this for a year and a half, but it may yet happen.
I like to write back and forth to other parents, and also to teens, about the problems they are having. I do this on a volunteer basis. I am also available for more intensive help via professional consultation.
The best online source of information about CFS/ME in children is the CFIDS Association of America's page Introduction to Pediatric CFIDS. For other useful information and contacts, go to the CFIDS Youth Alliance (CYA).
If you are a young person with CFS/CFIDS/ME, or FM, there are pen pal organizations, chat rooms, and many other resources both Online and Off-line. The same links provide contacts for parents. I particularly recommend the online discussion group for parents, CFS-P. To subscribe to this group send a message to majordomo@tertius.net.au and in the body of the message type (exactly as shown): subscribe CFS-P. In addition, parents will be interested in the Parent Place maintained by YPWC-NET.
A great resource for both young people with CFS and their parents is Youth Allied by CFIDS, a quaterly newsletter put out by the CFIDS Youth Alliance.
You may also enjoy reading some of the experiences of young people and their parents that are to be found in the experiences link above.
If you find links in this site which do not work, please let me know.