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

Recognizing 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.

Pediatric Primer

 * Jun 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (OPEN ACCESS/FULL TEXT).

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

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


 * 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.
 * ME/CFS in Children Fact Sheets

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.
 * Pediatric ME, CFS, SEID for Families and their GPs

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)

Learn more

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