Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

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Children and teens living with Chronic Fatigue Syndrome. Sixteen year old Olivia Cole became ill at 10. Interview from Good Morning Britain Apr 8, 2015.
What the [world] don’t [see] two faces of M.E.[1]

Pediatric myalgic encephalomyelitis and chronic fatigue syndrome (ME) and (CFS), or ME/CFS, may occur in very young children or teenagers; with children as young as two years old found to be affected.[2] Young people with ME/CFS are more likely to have a good prognosis than adults, although some may be very severely ill.[2] Up to 2 in 100 children suffer from ME/CFS but is more common in adolescents than in younger children.[3]

Pediatric ME/CFS is defined by the Centers for Disease Control and Prevention (CDC)[4] (ME/CFS), the International Consensus Criteria (ICC) [2] (an ME criterion), and the National Academy of Medicine's (NAM) Systemic Exertion Intolerance Disease (SEID)[5] (an ME/CFS criterion) although it is more common in adults.[6] "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."[7] Children are diagnosed with ME/CFS at three months of illness under the SEID and Canadian Consensus Criteria (CCC) and myalgic encephalomyelitis (ME) is diagnosed immediately under the ICC.[8][9][10][2]

It is especially important that parents, guardians, and educators understand the ME/CFS hallmark symptom, post-exertional malaise (PEM); symptoms will worsen 24-72 hours after physical or mental exertion. Cognitive dysfunction will impact a child's ability to do schoolwork,[11][12] even at home. However, children may not have PEM but they can experience a relapse from exertion, perhaps from just taking the school bus, and may have to spend prolonged periods in bed.[7]

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.[12] 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.[11]

Symptoms of pediatric ME/CFS[edit | edit source]

The same core symptoms for adults with ME/CFS are found in pediatric cases: chronic fatigue; post-exertional malaise (PEM); sleep problems; problems with thinking and memory; and/or orthostatic intolerance (OI).[13][14] However, the CDC notes some differences:

  • Children, especially adolescents, with ME/CFS have orthostatic intolerance (dizziness and lightheadedness and other symptoms that are triggered when standing up and sometimes also sitting upright) more often than adults. It is often the most unbearable symptom and may make other symptoms of ME/CFS worse.
  • Sleep problems in young children may show up as a lack of their usual energy. In adolescents with ME/CFS, sleep problems may be hard to detect, as sleep cycles change during puberty. Many adolescents begin to stay up late and often have trouble waking up early. The demands of classes, homework, after-school jobs, and social activities also affect sleep. Common sleep complaints in children and adolescents with ME/CFS include:
  • Unlike adults with ME/CFS, children and adolescents with ME/CFS do not usually have muscle and joint pain. Yet headaches and stomach pain may be more common in this age group. Younger children may not be able to describe the pain well.
  • In children, particularly in adolescents, ME/CFS is more likely to start after an acute illness, like the flu or mononucleosis. Sometimes, ME/CFS in children might begin gradually.[14]

Dr. David Bell agrees the symptoms for children can be different noting abdominal pain is more common and in teens there can be facial flushing. Instead of PEM, children can relapse from minor exertion spending prolonged periods of time in bed.[7]

Prevalence[edit | edit source]

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 0.181%.[15] A 2011 study in the Netherlands reported a prevalence rate of 111 per 100 000 adolescents or 0.111%.[16]

In 2012, the CDC estimated less than 20% of (adult) Americans that have chronic fatigue syndrome (CFS) were diagnosed.[17] 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."[18]

Prognosis[edit | edit source]

Prognosis in adolescents is considered to be better than in adults.[19][20]  Gill et al. reported that 4.5 years after an initial evaluation almost a quarter of adolescent ME/CFS patients reached “near to complete improvement”. The diagnosis in this study however was made retrospectively (by looking at old charts and test results instead of a clinician’s assessment). A Dutch team followed up on 54 adolescents with ME/CFS. After an average of 2.2 years almost half of the sample said they've had almost completely recovered. David Bell followed up on 35 ME/CFS patients who fell ill during the Lyndonville outbreak in the 1980s. Prognosis was favorable: 37% said they had "recovered completely" and felt "entirely well.” A further 42.9% agreed with the statement “I have never recovered completely but feel pretty well." Other studies (Rangel et al., Sulheim et al.,, Rimes et al.) have reported similar high improvement/recovery rates in pediatric ME/CFS, though these studies did not use generally accepted diagnostic criteria of ME/CFS. In the Bulletin of the IACFS/MEKatherine Rowe claimed to have data for 256 young ME/CFS patients 12 years after initial evaluation. Eighty-eight percent reported recovery, though this information has not been reported in a peer-review publication. In its 2015 report (p.183, 213), the NAM noted a lack of well-designed longitudinal studies on the prognosis of ME/CFS in children and adolescents.

However, Dr. Bell notes that if an adolescent spent three months in bed due to ME/CFS they will still be ill at age 35 even if their symptoms were mild in their adult years. Becoming increasingly ill with activity and symptom severity is expected 15-20 years later.[7]
One study of young adults followed for fifteen years demonstrated clear improvement in activity, but not illness resolution8. The same group of patients continued to do relatively well for a further five to ten years and then became worse in both activity limitation and symptom severity12. It is rare for an adolescent to become completely free of the disease13.[7]

Infectious onsets of ME/CFS[edit | edit source]

One in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetii 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.[21] Genes are being considered for a risk in developing ME/CFS as sometimes several members of the same family will develop ME/CFS.[21] Children, particularly adolescents, will more likely have an acute illness like the flu or mononucleosis as their onset.[22]

Other infections studied in relation to ME/CFS but not necessarily causative:

Other reported onsets:


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

Pediatric onset patients[edit | edit source]

Please read their pages for more information.

  • Merryn Crofts Onset age 15. Died of ME; second in UK to have ME listed on death certificate.

School nurse guides on Pediatric ME/CFS[edit | edit source]

Guides on Pediatric ME/CFS[edit | edit source]

Government[edit | edit source]

Research groups[edit | edit source]

Advocacy groups[edit | edit source]

Webinar[edit | edit source]

Charities[edit | edit source]

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[edit | edit source]

  • 1996, Long-term sickness absence due to ME/CFS in UK schools; an epidemiological study with medical and educational implications.[50](Full text)

See also[edit | edit source]

Generally accepted criteria for diagnosis[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. Awareness, CFDA # (Jan 15, 2019). "What the don't two faces of M.E.pic.twitter.com/DYZVhtyrG5". @SharonTiday. Retrieved Jan 17, 2019. 
  2. 2.02.12.22.3 Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A. C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (Aug 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890Freely accessible. PMID 21777306. 
  3. "ME/CFS in Children | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Jan 18, 2019. Retrieved Apr 13, 2019. 
  4. "Pediatric ME/CFS: Fact Sheet for Healthcare Professionals | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Oct 10, 2017. Retrieved Oct 13, 2018. 
  5. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". The National Academies Press. Pediatric ME/CFS Chapter 6, p 181. Mar 16, 2015. doi:10.17226/19012. 
  6. "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Jan 18, 2019. Retrieved Jan 31, 2019. 
  7. 7.07.17.27.37.47.5 "ME/CFS in Children - by David S. Bell, MD | Open Medicine Foundation". Open Medicine Foundation. Jun 25, 2016. Retrieved Aug 11, 2018. 
  8. "Pediatric ME/CFS links". www.masscfids.org. Retrieved Aug 11, 2018. 
  9. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nationalacademies.org. 
  10. Carruthers, Bruce; Jain, Anil Kumar; De Meirleir, Kenny; Peterson, Daniel; Klimas, Nancy; Lerner, A. Martin; Bested, Alison; Flor-Henry, Pierre; Joshi, Pradip; Powles, A.C. Peter; Sherkey, Jeffrey; van de Sande, Marjorie (2003). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11: 7–36. doi:10.1300/J092v11n01_02. 
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  16. 16.016.1 Nijhof, S. L.; Maijer, K.; Bleijenberg, G.; Uiterwaal, C. S. P. M.; Kimpen, J. L. L.; van de Putte, E. M. (Apr 18, 2011). "Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity". PEDIATRICS. 127 (5): e1169–e1175. doi:10.1542/peds.2010-1147. ISSN 0031-4005. 
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  19. "Prognosis | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Jul 10, 2018. Retrieved Oct 28, 2018. 
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Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

Myalgic encephalomyelitis or chronic fatigue syndrome, often used when both illnesses are considered the same.

Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

Systematic Exertion Intolerance Disease. A new term with new diagnostic criteria designed to replace chronic fatigue syndrome.<ref name="IOM2015">{{citation| last1 = Institute of Medicine| author-link = National Academy of Medicine| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

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