ME/CFS in Children: Information for Families

What to know

Myalgic encephalomyelitis/chronic fatigue syndrome is a disabling and complex illness that can be challenging for families to manage. Here are some tips to help you in dealing with your child’s illness.

Be an Advocate

Take an active role in managing your child's illness and encourage him or her to do the same. This allows you to make the best possible choices for his or her health.

• Learn as much as you can about ME/CFS and how it affects your child.
• Talk with your child's healthcare provider.
• Speak with school staff (teachers, counselors, nurses).
• Work with teachers and other school staff to develop an action plan.
• Educate the school and others about ME/CFS.

Be Familiar with School Resources

ME/CFS can affect a student's experience at school. Fatigue, pain, and concentration or memory problems can make it hard for a child to complete homework assignments. It may also be difficult for them to participate in the classroom or attend school on a regular basis.

• Receiving a ME/CFS diagnosis will not immediately qualify a child for services.
• A child needs further evaluation and identification as needing services at school.
• Evaluation is conducted by a team from the school.
• Assessments may include in-class observations, tests, interviews, and conversations with teachers and parents.
• Parents need to give consent before a student undergoes an evaluation.

Additional services could include an Individualized Education Plan (IEP) or a 504 Plan. An IEP is a map that lays out support and services for a child to do well in school. A 504 plan lists a child's disability and how the school can help. These programs are developed with help from administrators, teachers, and parents.

More information on IEPs can be found at the Center for Parent Information and Resources website. Information on 504 plans is available on the U.S. Department of Education website. Talk to your child's school to understand and explore these plans.

Family and Social Activities

Socializing is important for children. Limited social involvement inside and outside of school, students with ME/CFS may feel isolated from their friends and peers. It can be challenging for families to be involved in social events or family activities. However, these activities are essential for the well-being of the child and family.

It is important to talk to your child's school about opportunities for your child to interact with peers. For example, the school could allow your child to participate in after-school activities or attend lunch periods. Some families find it helpful to connect with support groups to talk with other families who have a child with ME/CFS.

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