Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer.

Peter C Rowe,Alan Gurwitt,Nigel Speight,Rosemary A Underhill,Malcolm S Schwartz,Kenneth J Friedman,Julian M Stewart,Rosamund Vallings,Marvin S Medow,Katherine S Rowe

doi:10.3389/fped.2017.00121

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.

Highlights

Pediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by overwhelming fatigue and a substantial loss of physical and cognitive function
Lightheadedness is very common in pediatric Myalgic encephalomyelitis (ME)/CFS, and prolonged upright posture can aggravate other symptoms, including fatigue, headache, nausea, and cognitive dysfunction [48,49,50]
Myalgic encephalomyelitis/chronic fatigue syndrome should not be diagnosed if the patient has an identifiable medical or primary psychiatric condition that could plausibly account for the presenting symptoms

Summary

Introduction

AND OVERVIEWPediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by overwhelming fatigue and a substantial loss of physical and cognitive function. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. The diagnosis of ME/CFS is purely clinical and is based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing.

Results

Conclusion