Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

Pediatric ME/CFS has been defined by the Centers for Disease Control (CDC) and the Institute of Medicine (IOM) although it is usually diagnosed in adults. "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults." Children can be diagnosed at 3 months while adults are diagnosed at six months.

In 2012, the (CDC) estimated less than 20% of (adult) Americans that have CFS were diagnosed. A 2008 ProHealth survey of 1,210 (adult) ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."

In 2006, a study in Chicago, Illinois by Jordan, et al, concluded that the overall prevalence rate for a community-based sample of adolescents (aged 13 to 17) was 181 per 100,000 or .181%.

Pediatric Primer

 * June 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (OPEN ACCESS/FULL TEXT). Authors: Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe 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.

Recognized as a Pediatric disease
Pediatric ME/CFS is outlined in the 2015 Institute of Medicine report*.

The Massachusetts CFIDS/ME & FM Association has produced 6 pages of easy to step through information based on the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/MD) case definition: ME/CFS A Primer for Clinical Practitioners*.


 * Pediatric ME/CFS Diagnosis* (2014)


 * Page titles


 * 1) Pediatric case definition/diagnostic criteria for ME/CFS
 * 2) Exclusionary conditions
 * 3) Differential diagnosis
 * 4) Finding a doctor
 * 5) More Resources
 * 6) References

A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome* was developed in 2006 by Leonard Jason, et al.
 * FULL TEXT*

*These definitions/criteria have NOT been officially accepted into clinical care settings. However, they may be helpful in speaking to your doctor about symptoms and tests.

The CDC provides Factsheets for Healthcare Professionals, Parents/Guardians, and Education Professionals. (2014)
 * ME/CFS in Children Fact Sheets

Webinar

 * 2017, A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer - Youtube "This webinar is led by Peter Rowe, MD, director of the Chronic Fatigue Clinic and professor of pediatrics at Johns Hopkins Children’s Center in Baltimore, Maryland." Webinar by Solve ME/CFS.

Charities
Tymes Trust is a UK charity dedicated to helping parents and guardians understand Pediatric ME/CFS and navigate social services, healthcare, and the school system.
 * Pediatric ME, CFS, SEID for Families and their GPs (2016)

Notable studies

 * 2018, Chronic fatigue syndrome in Chinese middle-school students (Full Text)
 * 2016, Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway (Full text)
 * 2015, Pediatric ME/CFS - Institute of Medicine Report - The National Academies Press (Full Text)
 * 2015, Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome (Full Text)
 * 2006, A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Full Text)
 * 1997, Research with Children and Adolescents with Chronic Fatigue Syndrome: Methodologies, Designs, and Special Considerations (Abstract)