Image of young child hanging over the side of the bed with a sad, tired expression and eyes closed. Behind the bed, the sun and moon both rise and set to show how the child feels all the time.

Lilly Klontz, age 16, from OK, created this artwork in response to a contest prompt asking participants to depict how having ME/CFS makes people feel.

What is ME/CFS?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness. According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed. ME/CFS is often thought of as a problem in adults, but children (both adolescents and younger children) can also get ME/CFS.

A CPIR collaborative with the CFSAC, CDC, and DOE

11 year old girl lying in bed, sick with ME/CFS

11 year old girl lying in bed, sick with ME/CFS

On the recommendation of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the U.S. Department of Health and Human Services, the Centers for Disease Control and Prevention (CDC) and the U.S. Department of Education (DOE) have collaborated to disseminate information about Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to all Parent Training and Information Centers (PTIs). The CPIR is pleased to provide web links to content in the pediatric section of the CDC’s ME/CFS website.  The CDC’s website also currently features web links to CPIR and DOE resources that might be helpful to patients with ME/CFS and their families. Some of the agencies’ resources are included below.

CDC Fact Sheets for Parents/Guardians, Education, and Healthcare Professionals

U.S. Department of Education Resources on IDEA and Section 504

CPIR Information and Resources

Patients with ME/CFS (and their families) often talk about how different patients can appear to others, including school staff and doctors, on “good days” versus “bad days.” On bad days, patients sometimes feel so ill that they can’t go to doctor appointments, for example, and thus doctors don’t see or appreciate how sick their patients are. This occurs in school settings as well. The photos below are of the same young woman.  They demonstrate how different a patient might feel or appear on either a “good” or “bad” day.  The third photo also demonstrates that patients with ME/CFS can achieve academic milestones that are important for lifelong success.  Academic support and accommodations can be critical to achieving these milestones.
young, smiling woman sitting on couch with her two dogs
unhappy young woman with oxygen hook up, looking at camera
smiling young woman in white high school graduation cap and gown
Young man on a bad day, looking pale and unhappy
ME/CFS is often called an “invisible” disease because usually the only thing noticeable is the “pallor.”  This young man is shown on both a good day and a bad day. Most teachers would tell a parent that he needs more sleep and would ask the student: “What time did you go to bed last night?” or make some comment such as: “Don’t you think you should have gone to bed a bit earlier last night?”
Young man on a good day, smiling and looking ready to go
However, when teaching or supporting adolescents or younger children with ME/CFS, it can be helpful to understand more about the problems faced by these students.  In addition, educational professionals, including school nurses, can sometimes refer students who have symptoms suggestive of ME/CFS to get the medical evaluations that they need, while also helping to put in place the school supports that can be critical both during evaluations and following diagnosis.

Information for education professionals such as teachers, guidance counselors, and other school staff about supporting students with ME/CFS is available in the CDC’s Fact Sheet for Educational Professionals.