What to know
Adolescents and younger children with ME/CFS have a wide range of symptoms that can be difficult to manage. The severity and duration of these symptoms may change over time. However, treating symptoms will often improve their quality of life. Healthcare providers can help patients and their families understand the illness and how it may affect school performance and social life.
Reduce symptoms affecting quality of life
A goal of managing ME/CFS in adolescent and younger children is to reduce symptoms that limit daily activity. Memory and concentration problems are two commonly reported symptoms of ME/CFS in children. An adolescent or younger child with concentration problems often has a hard time in school.
Sleep problems can contribute to poor school performance or school attendance. Afterschool activities, such as sports or school clubs, are important for social skills. However, these may need to be limited if children with ME/CFS find them too difficult.
Healthcare providers should use extra caution when prescribing medicines for children with ME/CFS. Patients with ME/CFS might be more likely to have adverse reactions to standard doses. Starting medications at the smallest possible doses and for the shortest possible time should be considered.
How ME/CFS affects a student’s school experience
ME/CFS can affect a student’s school experience in several ways. For example, attendance, classroom participation, completion of assignments, and relationships with peers. Symptoms can fluctuate day to day and week to week. These changes affect a young person’s ability to attend school regularly and perform consistently.
In extreme cases of the illness, children may be unable to leave the house because their symptoms are so severe. This could isolate them from their friends or peers, as they miss out on opportunities to socialize. For example, children with ME/CFS say they particularly miss eating lunch with friends and participating in after-school activities.
Children may experience problems with attention, response speed, information processing speed, and delayed recall of verbal and visual information. For instance, it may be challenging for adolescents to take notes and listen to their teacher at the same time.
Understanding the problems experienced by children and adolescents with ME/CFS is helpful for clinicians and for teachers. Clinicians and educators can work together to ensure adolescents and have access to educational support resources.
Communicate effectively with schools
Letters from clinicians to a school helps support students with ME/CFS. When communicating with schools at the request of a parent/guardian, clinicians may describe the possible or confirmed diagnosis. Describing symptoms that can affect school performance and attendance is helpful.
• Document suspected or confirmed diagnosis of ME/CFS and description of symptoms the patient is experiencing
• Suggest different types of support for the child and the family. These include: testing accommodations, homework modifications, limited physical activity, splitting time between school and home tutoring, giving approval for drinks and salty snacks if needed.
• Provide examples of how ME/CFS can affect activities of daily life and educational performance.
Healthcare provides can include this type of information in a letter to schools. Remember the Health Insurance Portability and Accountability Act (HIPAA) and Family Educational Rights and Privacy Act (FERPA). Keep patient confidentiality in mind at all times.
