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 and Prevention (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 with the exception being symptoms that meet the International Consensus Criteria (ICC) for myalgic encephalomyelitis (ME) when a diagnosis should be made immediately for both children and adults.

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."

Infectious onsets of ME/CFS
One in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS; people with severe symptoms to these infections are more likely to develop ME/CFS. Genes are being considered for a risk in developing ME/CFS as sometimes several members of the same family will develop ME/CFS.

Other infections studied in relation to ME/CFS but not necessarily causative:
 * Bornaviruses
 * Candidiasis
 * Enterovirus
 * HHV-6
 * HIV
 * Hepatitus
 * Mycoplasma
 * Rubella

Other reported onsets:
 * Flu-like illness
 * Gastreontitus
 * Influenza


 * Mononucleosis
 * Vaccines

Many outbreaks have been attributed to a flu-like illness including Incline Village, NV, Rockville, MD, and the Tapanui & West Otago Outbreak to name a few. For some unknown reason, young children are generally not impacted during an outbreak.

School nurse guides on Pediatric ME/CFS

 * 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
 * Karina Hansen Onset as adult teenager


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

Generally accepted criteria for diagnosis

 * Canadian Consensus Criteria (CCC) - A diagnosis of moderate and severe forms of ME/CFS are accurately made using this criterion. Adults can be diagnosed at six months while pediatric cases are diagnosed at three months.


 * International Consensus Criteria (ICC) - This criterion will accurately diagnose myalgic encephalomyelitis (ME) which is a chronic, inflammatory, physically and neurologically disabling disease. For pediatric and adult cases a diagnosis should be made immediately. CCC and SEID criteria cannot diagnose immediately nor speak to the array and severity of central nervous system (CNS), autonomic (ANS), and immune system symptoms patients experience.


 * Systemic Exertion Intolerance Disease (SEID) - A mild form of ME/CFS (SEID) is accurately diagnosed when the most basic of its criteria is met but is useful for a more severe presentation of the disease as symptom severity and other symptoms are outlined in the Institute of Medicine report. Adults can be diagnosed at six months while pediatric cases are diagnosed at three months.

Learn more

 * Jul 31, 2018, The children left bed-bound by fatigue
 * Oct 16, 2018, 'My son hasn't left the house in a year'