About 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.
ME/CFS has no known cause. It is often triggered by a viral illness, resulting in the sudden onset of symptoms, although roughly 25% of pediatric cases develop slowly over time. As with adults, the severity of the illness can range from mild (only a small impact on daily activities) to severe (housebound or bed-bound). Symptoms may come and go with time.
The prevalence of pediatric ME/CFS in adolescents has been estimated to be about 1.8 out of 1,000 in the United States[1]. This rate makes pediatric ME/CFS more common than sickle cell anemia, juvenile rheumatoid arthritis, or Down syndrome among children. With the development of Long COVID associated ME/CFS, this number is likely to now be even higher.
Symptoms
Pediatric ME/CFS, similar to adult ME/CFS, is characterized by numerous symptoms in multiple body systems. Parents and caregivers can become overwhelmed by the number and variety of symptoms, but diagnosis requires the presence of a group of specific, core symptoms which fall into five categories:
- Persistent fatigue, and especially post-exertional malaise (PEM) in which even mild activity — social, emotional, or physical — can cause a rapid loss of physical and mental stamina. During PEM (also known as a ‘crash’) symptoms can be exacerbated or new symptoms can occur. Recovery is slow, taking days to weeks.
- Unrefreshing sleep, disturbed sleep, or day/night reversal.
- Pain in muscles, joints, head, or stomach.
- Neurocognitive issues, such as impaired memory, difficulty focusing, or “brain fog.” This often manifests as new trouble with educational subjects.
- Autonomic, neuroendocrine, or immune disturbances:
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- Autonomic: dizziness and/or changes in heartrate when upright, increased sensitivity to sound and light
- Neuroendocrine: feeling feverish, cold extremities, intolerance of extremes of heat and cold
- Immune: recurrent flu-like symptoms, new sensitivities to food, odors, or chemicals
Children are more likely than adults to suffer from dizziness, abdominal pain, rashes, fevers, and chills.
Diagnosis
There is no test to confirm a diagnosis of Pediatric ME/CFS. The current diagnosis is from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (2017) (PDF). ME/CFS is diagnosed when symptoms have persisted for more than six months. The main difference between the adult and pediatric definitions is that children can receive a provisional diagnosis after three months. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners (PDF) contains a pediatric case definition worksheet, a functional capacity scale, and an activity log.
ME/CFS is not depression, and depression can co-occur in Pediatric ME/CFS
Pediatric ME/CFS is frequently misdiagnosed as a behavioral or emotional issue, such as school phobia or depression. These disorders can occur at the same time as ME/CFS, or can be a consequence of dealing with a devastating chronic illness, and their presence does not rule out a diagnosis of ME/CFS.
Careful observation of symptoms can differentiate ME/CFS from other disorders. For example, young people with depression don’t want to participate in activities, whereas young people with ME/CFS want desperately to continue normal activities, but are not physically able.
Young people with depression may feel better after moderate exercise, whereas young people with ME/CFS may suffer post-exertional malaise and a relapse of other symptoms. Young people with school phobia may feel better when allowed to stay home or on weekends, whereas no such pattern exists in young people with ME/CFS.
Treatment and Management
Currently, pediatric ME/CFS has no cure, and no specific FDA drug has been approved for ME/CFS. The main treatment approach is to ameliorate symptoms and co-occurring conditions as much as possible, through Western medicine and/or nontraditional approaches (e.g., diet, supplements, acupuncture). The symptoms of pain, sleep disturbance, and orthostatic intolerance can be targeted by traditional medication. Medications should be introduced slowly, since many pediatric patients with ME/CFS respond to lower than standard doses.
Patient self-management is very important for quality of life. A critical part of management is pacing. Pacing involves trying to stay within the child’s “energy envelope” so that they do not crash, or have symptoms worsen. Keeping track of activities and symptoms can be useful to find patterns and to learn the child’s limits. Repeated crashes can lead to longer-term severity of the illness.
References
- 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.
Resources
- The Center for Disease Control and Prevention (CDC) has a short summary of management and treatment approaches for children.
- Pacing and Management Guide for Pediatric ME/CFS and Long COVID (PDF) is an excellent resource from #MEAction.
- Clinical Care Guide: Managing ME/CFS, Long COVID and IACCs from the Bateman Horne Center is written for clinicians and other health care providers, and contains a very good section on managing Pediatric ME/CFS.
- Managing ME/CFS: A Guide for Young People is a 2015 book written for teenagers with the illness, and will also be useful for parents. It gives clear explanations of the illness and summarizes current thinking about treatment approaches.
- Voices from the Shadows has produced two short videos of Prof. Peter Rowe and Dr. Nigel Speight discussing pediatric ME/CFS diagnosis and management.
- CFS in Children and Adolescents (PDF) is a two-page fact sheet from the New Jersey Chronic Fatigue Syndrome Association that provides a summary of symptoms, diagnosis, and management.
- #NotJustFatigue produced a short movie about Elizabeth, a young person with severe ME.