What is pediatric ME/CFS?
As in adults, pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating, and sometimes disabling illness, which affects multiple systems in the body. Symptoms include profound exhaustion, post-exertional malaise, sleep disorders, neurological symptoms, orthostatic intolerance, and cognitive problems, such as difficulty concentrating or remembering. Pediatric ME/CFS can range in severity from mild (only a small impact on daily activities) to moderate (symptoms become severe with exertion, unable to attend school regularly) to severe (housebound or bed-bound). Symptoms may come and go with time. The prevalence of pediatric ME/CFS in adolescents is estimated to be about 1.8 out of every 1,000 in the US 1. This rate makes pediatric ME/CFS more common than sickle cell anemia, juvenile rheumatoid arthritis, or Down syndrome among children. Please see Pediatric ME/CFS Diagnosis for more information about symptoms and diagnosis.
How is pediatric ME/CFS diagnosed?
Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is diagnosed by exclusion. Because there is no test or biomarker for ME/CFS, the diagnosing physician must rule out other illnesses which may cause symptoms similar to those of ME/CFS. The main difference between the adult and pediatric definitions is that pediatric ME/CFS patients can receive provisional diagnosis after 3 months of ongoing fatigue that results in substantial reduction in activity and is not alleviated by rest, and the concurrent existence of post-exertional malaise, unrefreshing sleep, pain, neurocognitive symptoms, and autonomic, neuroendocrine or immune manifestations. Pediatric ME/CFS Diagnosis has more detailed information, further reading, and checklists.
Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has no known cause. It is often triggered by a viral illness, resulting in the sudden onset of symptoms, although roughly 25% 1 of pediatric cases develop slowly over time.
What about school?
A primary concern for children and adolescents with ME/CFS is how to continue their education. Many patients are too sick to attend school regularly, or at all. Some school personnel have trouble understanding that ME/CFS is a real, physical illness, especially if doctors are slow to arrive at a diagnosis. However, public schools are legally required to make accommodations so that children with physical impairments, including ME/CFS, can get a free and appropriate public education (FAPE). Please see Educational Rights for information about working with schools, and Information for Schools for information to share with school personnel.
The Center for Disease Control and Prevention (CDC) website has summaries and fact sheets about pediatric ME/CFS. Information was updated in July 2017.
Practical Guidance on Diagnosing and Managing ME/CFS presented at the Massachusetts Academy of Family Physicians Annual Meeting, March 24, 2018, by Alan Gurwitt, MD and Leah Williams, PhD.
1. Jordan KM et al, “Prevalence of Pediatric Chronic Fatigue Syndrome in a Community-Based Sample,” J Chronic Fatigue Syndrome 13, no. 2-3 (2006): 75-78.