Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-symptom illness that currently has no cure, and no FDA approved drug treatments. The main treatment approach is to ameliorate symptoms as much as possible, through Western medicine (e.g., drugs) and/or nontraditional approaches (e.g., diet, supplements, acupuncture). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer has a discussion of management and treatment approaches based on the limited published literature and on the clinical experience of the co-authors. The Center for Disease Control and Prevention (CDC) has a short summary of management and treatment approaches.
Important points are that medications should be introduced slowly, since many pediatric patients with ME/CFS respond to lower than standard doses, and that patient self-management is very important for quality of life. Good sleep hygiene, learning to pace oneself in order to avoid post-exertional malaise and relapses, and developing coping skills can all be helpful.
The publications in More resources below have additional information about management and treatments.
The Division of Adolescent Medicine at Boston Children’s Hospital has an intake coordinator for complex cases, including ME/CFS. The goal is to provide a more coherent treatment approach for adolescent ME/CFS patients, and to point families to the adolescent medicine doctors who are more knowledgeable about the illness. The phone number for the intake coordinator is 617-355-7178.
Hasbro Children’s Hospital in Providence, RI has an outpatient day program for children with chronic illnesses called the Pediatric Partial Program. The goal is to improve functioning in daily life. The approach includes structured daily activities, individual, group and family counseling, coping strategies, physical therapy, and nutritional counseling. The program treats children and adolescents with a wide variety of chronic illnesses.
Chronic Fatigue Sydrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners by the International Association for CFS/ME provides extensive information about symptoms, diagnosis and treatment approaches, a pediatric case definition worksheet, a functional capacity scale, and an activity log (Friedberg et al, 2014).
Managing ME/CFS: A guide for young people is a book published in 2015 by Dr. Rosamund Vallings geared 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. The Kindle edition is available through Amazon or a paper copy can be ordered through Calico Publishing in New Zealand.
Myalgic Encephalomyelitis—Adult & Paediatric: International Consensus Primer for Medical Practitioners by the ME International Consensus Panel also provides extensive information about symptoms, diagnosis and treatment approaches, and includes diagnostic worksheets (Carruthers et al, 2012).
"What a primary care physician can do for CFS patients," is a 2010 presentation by Dr. James Oleske, a Professor of Pediatrics at the University of Medicine and Dentistry, Newark, New Jersey.