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

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer is a physician's primer published in Frontiers in Pediatrics in 2017 by the International Writing Group for Pediatric ME/CFS. (OPEN ACCESS/FULL TEXT) The Solve ME/CFS Initiative covered the publication cost of this primer using funds dedicated to medical education.

International Writing Group for Pediatric ME/CFS

• Peter C. Rowe, MD, Division of General Pediatrics and Adolescent Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States (Lead Author)
• Rosemary A. Underhill, MB, BS, Independent Researcher, Palm Coast, FL, United States
• Kenneth J. Friedman, PhD, Pharmacology and Physiology, New Jersey Medical School, Newark, NJ, United States
• Alan Gurwitt, MD, Yale Child Study Center, Harvard Medical School, University of Connecticut School of Medicine, Newton Highlands, MA, United States
• Marvin S. Medow, PhD, Division of Pediatric Gastroenterology, Hepatology and Nutrition, New York Medical College, Valhalla, NY, United States
• Malcolm S. Schwartz, MD, Drexel University College of Medicine, Philadelphia, PA, United States
• Nigel Speight, Paediatrician, Durham, United Kingdom
• Julian M. Stewart, MD, PhD, Division of Pediatric Cardiology, New York Medical College, Valhalla, NY, United States
• Rosamund Vallings, MD, MNZM, MB, BS, Primary Care/Chronic Fatigue Syndrome Clinic, Howick Health and Medical, Auckland, New Zealand
• Katherine S. Rowe, MD, Department of General Medicine, Royal Children's Hospital, Murdoch Children’s Research Institute, Melbourne, VIC, Australia

Citation

Rowe, Peter C.; Underhill, Rosemary A.; Friedman, Kenneth J.; Gurwitt, Alan; Medow, Marvin S.; Schwartz, Malcolm S.; Speight, Nigel; Stewart, Julian M.; Vallings, Rosamund; Rowe, Katherine S. (2017). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer". Frontiers in Pediatrics. 5 (121): 121. 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.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

etiology The cause of origin, especially of a disease.

cognition Thought processes, including attention, reasoning, and memory.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).