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Factsheet for Healthcare Professionals

CFS in children and adolescents can be difficult to diagnose and manage. This factsheet offers information intended for healthcare professionals including physicians, nurses, and nurse practitioners on topics such as helping patients reduce symptoms, understanding how CFS affects children or adolescents in school, and communicating with schools.

Managing CFS in Children and Adolescents

Chronic fatigue syndrome (CFS) in children and adolescents can be challenging to diagnose and manage. Children and adolescents with CFS can have a wide range of symptoms, and their varying severity and duration make it imperative to periodically review CFS symptoms and course of the illness. This approach can monitor the variation of symptoms and also identify other new health problems.

Help Patients Reduce Symptoms Affecting their Quality of Life

The goal of managing CFS in children and adolescents is to reduce symptoms, particularly those associated with fatigue, which can limit daily activity. Memory and concentration problems are two commonly reported symptoms of CFS in children and adolescents. A child or adolescent with concentration problems often has a hard time in school and with afterschool activities, such as sports or school clubs. Sleep problems can contribute to poor school performance or school attendance. Encourage parents to provide students with tools such as organizers and schedulers that may be helpful in managing the effects of the illness.

Healthcare providers should use extra caution when prescribing medicines for fatigue and cognitive problems in children with CFS. The medicines can be unpredictable, and CFS patients may be more likely to have adverse reactions to standard doses.

Understand How CFS Affects a Student’s School Experience

CFS can affect a student’s school experience in several ways, such as attendance, participation inside and outside the classroom, completion of assignments, relationships with peers, and overall school success. Symptoms can fluctuate day to day and week to week, affecting 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 may be problematic as the child or adolescent could become isolated from their friends or peers and miss out on opportunities to socialize, such as during school lunch periods.

Children and adolescents with CFS 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 CFS patients is helpful for doctors who care for children and adolescents with CFS and for teachers who teach these students. Providers, parents, and educators can work together to ensure a child or adolescent suffering from CFS has access to educational support resources.

Communicate Effectively with Schools

CFS is a complex illness, and the severity of the illness differs from person to person. Letters from physicians may provide support to students with CFS and their parents in finding services to help them at school. When communicating with schools at the request of a parent/guardian, physicians may describe the diagnosis with particular emphasis on symptoms that can affect school performance and attendance.

Physicians must keep the Health Insurance Portability and Accountability Act (HIPAA), Family Educational Rights and Privacy Act (FERPA), and patient confidentiality in mind at all times.

Sample Information to Include in Physician Letter

  • Document diagnosis of CFS and description of symptoms the patient is experiencing
  • List support potentially needed for the child and the family in their experience of the illness, including its unpredictable symptoms
  • Provide examples on how CFS can affect activities of daily life and educational performance:
    • This can include a decrease in energy levels, focus, and alertness, which might impact a child’s performance at school.
  • Explain how extra educational support can help patients attain their learning objectives:

This can include testing accommodations, homework modifications, limiting physical activity, splitting time between school and home tutoring, and permission to have fluids and salty snacks available, if needed.

 

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