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

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)

See also

• Cognitive dysfunction
• Post-exertional malaise
• Prognosis
• Primer for family, friends and care providers
• Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006 - entire issue devoted to pediatric ME/CFS

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

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.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."