Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

Pediatric myalgic encephalomyelitis and chronic fatigue syndrome (ME) and (CFS) has been defined by the Centers for Disease Control (CDC) and the National Academy of Medicine (NAM) 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.

It is especially important that parents, guardians, and educators understand ME/CFS's hallmark symptom, post-exertional malaise (PEM); symptoms will worsen 24-72 hours after physical or mental exertion. Cognitive dysfunction will impact their ability to do schoolwork even at home.

Recognizing that school nurses are necessary for helping children and their families navigate ME/CFS while balancing the child's education needs, the United States National Association of School Nurses (NASN) published School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The Chronic Fatigue Syndrome Advisory Committee (CFSAC), along with the US Department of Health and Human Services (HHS) published Supporting the Pediatric Needs of Educating Students.

Prevalence
A 2006 study 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%. A 2011 study in the Netherlands reported a prevalence rate of 111 per 100 000 adolescents or .111%.

In 2012, the CDC estimated less than 20% of (adult) Americans that have chronic fatigue syndrome (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."

School nurse guides

 * 2017, Supporting the Pediatric Needs of Educating Students


 * 2018, School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Government

 * 2015, Pediatric ME/CFS by the NAM US


 * 2018, Fact Sheets for healthcare professionals, parents and guardians, and education professionals by the CDC US

Research groups

 * 2006, Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (FULL TEXT) US
 * 2006, Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006 - entire issue devoted to pediatric ME/CFS
 * 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (FULL TEXT) US

Advocacy groups

 * 2016, Pediatric ME, CFS, SEID for Families and their GPs UK


 * 2017, Pediatric ME/CFS Diagnosis US

Webinar

 * 2017, A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer "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."

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.

Notable studies

 * 1997, Research with Children and Adolescents with Chronic Fatigue Syndrome: Methodologies, Designs, and Special Considerations (Abstract)
 * 2006, A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Full Text)
 * 2011, Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. (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)
 * 2016, Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway (Full text)
 * 2018, Chronic fatigue syndrome in Chinese middle-school students (Full Text)

Pediatric onset

 * Lynn Gilderdale Onset age 14


 * Tom Kindlon Onset age 16
 * Naomi Whittingham Onset age 6

Learn more

 * Jul 31, 2018, The children left bed-bound by fatigue