When Your Child Has ME/CFS: Advocacy, School Support and Staying Connected

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness, and managing it can be hard on the whole family. Fatigue, pain and trouble with concentration or memory can make it difficult for a child to finish homework, take part in class or get to school regularly — and to keep up with friends. Here is how families can help.

Be an advocate

Take an active role in managing your child's illness, and encourage your child to do the same; it lets you make the best choices for their health.

• Learn as much as you can about ME/CFS and how it affects your child.
• Talk with your child's healthcare provider.
• Talk with school staff — teachers, counselors and nurses — and work with them on an action plan.
• Help the school and others understand ME/CFS.

Use the school's resources

A diagnosis of ME/CFS does not by itself qualify a child for services at school. The child first needs to be evaluated and identified as needing them:

1. A team from the school carries out the evaluation.
2. It may include classroom observation, tests, interviews, and conversations with teachers and parents.
3. Parents must give consent before the evaluation.

Services may include:

Both are developed with administrators, teachers and parents. The Center for Parent Information and Resources has more on IEPs, and the U.S. Department of Education on 504 plans. Ask your child's school about both.

Keep up family and social life

Children need to socialize. With less time in and out of school, students with ME/CFS can feel cut off from their friends, and families can find it hard to join in social events or family activities — yet these matter for the well-being of both child and family.

• Ask the school about ways for your child to spend time with peers, such as joining after-school activities or coming in for lunch.
• Some families find it helps to join a support group and talk with other families who have a child with ME/CFS.

Sources

Based on "ME/CFS in Children: Information for Families," Centers for Disease Control and Prevention, a work of the United States government in the public domain.