ME does occur in young children but is more common in adolescents. Because there has been very little research specific to children, we know less about it in that population than in the adult population. Less doesn’t mean we know nothing though and there was a specific chapter of Pediatric research in the 2015 US Institute of Medicine (now National Academy of Medicine)’s major report, Beyond ME/CFS: Redefining an Illness which is cited below:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. PMID: 25695122.
We also have a sense of the prevalence in children from a 2020 community-based study out of the US. It found the prevalence was .75% (or 75 out of 10,000). This may not seem like a lot but in every 200 children it means it is likely more than one of them will have ME.
As with adults, ME can occur gradually or acutely (following infectious mononucleosis is a classic example in adolescents). Similar to adults there is a wide range of severity. An excellent primer on Diagnosis and Management in young people was prepared by experienced ME clinicians in 2017. See the citation with a link below:
Rowe PC, Underhill RA, Friedman KJ, Gurwitt A, Medow MS, Schwartz MS, Speight N, Stewart JM, Vallings R, Rowe KS. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Front Pediatr. 2017 Jun 19;5:121. doi: 10.3389/fped.2017.00121.
The range of symptoms in children is similar to adults and diagnosis can be made using the same criteria. Although this is the case some symptoms seem to be more common in children than in the adult population, such as orthostatic intolerance.
In children there are the additional complications of educational and social development issues. Educational accommodation is often required. It is important that teachers and administrators understand that ME is a medical disease that can result in difficulties with school attendance or an inability to participate in physical activities due to exertion intolerance – it not the result of an unwillingness to participate.
Fortunately, in addition to the 2017 Primer on Diagnosis and Management, [link again if you think it is needed] there are helpful resources available through a number of places. We’ve linked to some of these below.le
More websites devoted to children with ME/CFS.
Centers for Disease Control and Prevention (CDC):
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society:
The Solve ME/CFS Initiative:
The Teach-ME sourcebook from the National ME/FM Action Network is a valuable resource for parents and teachers.