Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
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][5][9][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,[10][11] even at home. However, children may not describe 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.[11] 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.[10]

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).[12][13] 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 painHeadaches and stomach pain are more common pain symptoms in children and adolescents.[14] 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.[13]

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]

Particularly likely to cause ME/CFS are:

One in ten people, including children and teenagers, who become infected with one of these 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][13]

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

Other reported onset triggers:

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.

Risk factors[edit | edit source]

Genes are being considered for a risk in developing ME/CFS as sometimes several members of the same family will develop ME/CFS. Children and adolescents have bern known to develop ME/CFS after flu.[21]

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.[30] (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. CFDA #Awareness (January 15, 2019). "What the don't two faces of M.E.pic.twitter.com/DYZVhtyrG5". @SharonTiday. Retrieved January 17, 2019.
  2. 2.0 2.1 2.2 2.3 2.4 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 (August 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 3427890. PMID 21777306.
  3. "ME/CFS in Children | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved April 13, 2019.
  4. "Pediatric ME/CFS: Fact Sheet for Healthcare Professionals | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. October 10, 2017. Retrieved October 13, 2018.
  5. 5.0 5.1 5.2 5.3 5.4 Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. p. 181. doi:10.17226/19012. ISBN 0309316898. PMID 25695122.
  6. "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 31, 2019.
  7. 7.0 7.1 7.2 7.3 7.4 7.5 "ME/CFS in Children - by David S. Bell, MD". Open Medicine Foundation. June 25, 2016. Retrieved August 11, 2018.
  8. "Pediatric ME/CFS links". Massachusetts ME/CFS & FM Association. Retrieved August 11, 2018.
  9. 9.0 9.1 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.
  10. 10.0 10.1 Newton, Faith (June 2017). "Supporting the Pediatric Needs of Educating Students" (PDF). US Dept. of Health and Human Services.
  11. 11.0 11.1 11.2 Friedman, Kenneth J.; Mattey, Beth; Newton, Faith (September 15, 2018). "School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". NASN School Nurse. 33 (6): 372–379. doi:10.1177/1942602x18795299. ISSN 1942-602X.
  12. "Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 29, 2019.
  13. 13.0 13.1 13.2 "Symptoms and Diagnosis of ME/CFS in Children | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 29, 2019.
  14. 14.0 14.1 14.2 Jason, Leonard A; Jordan, Karen; Miike, Teruhisa; Bell, David S; Lapp, Charles; Torres-Harding, Susan; Rowe, Kathy; Gurwitt, Alan; De Meirleir, Kenny; Van Hoof, Elke LS (2006). "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 13 (2–3): 1–44. doi:10.1300/J092v13n02_01.
  15. Jordan, Karen M.; Huang, Cheng-Fang; Jason, Leonard A.; Richman, Judith; Mears, Cynthia J.; McCready, William; Katz, Ben Z.; Ayers, Penny M.; Rademaker, Alfred (2006). "Prevalence of Pediatric Chronic Fatigue Syndrome in a Community-Based Sample". Journal of Chronic Fatigue Syndrome. 13 (2–3): 75–78. doi:10.1300/j092v13n02_04. ISSN 1057-3321.
  16. 16.0 16.1 Nijhof, S. L.; Maijer, K.; Bleijenberg, G.; Uiterwaal, C. S.P.M.; Kimpen, J.L.L.; van de Putte, E.M. (April 18, 2011). "Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity". PEDIATRICS. 127 (5): e1169–e1175. doi:10.1542/peds.2010-1147. ISSN 0031-4005.
  17. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. July 3, 2018. Retrieved August 11, 2018.
  18. "A Profile of ME/CFS Patients - How Many Years and How Many Doctors? - Prohealth". Prohealth. May 16, 2008. Retrieved August 11, 2018.
  19. "Prognosis | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 10, 2018. Retrieved October 28, 2018.
  20. 20.0 20.1 20.2 20.3 Rowe, Peter C.; Underhill, Rosemary A.; Friedman, Kenneth J.; Gurwitt, Alan; Medow, Marvin S.; Schwartz, Malcolm S.; Speight, Nigel; Stewart, Julian M.; Vallings, Rosamund; Rowe, Katherine (2017). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer". Frontiers in Pediatrics. 5: 121. doi:10.3389/fped.2017.00121. ISSN 2296-2360.
  21. 21.0 21.1 21.2 21.3 "Possible Causes | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. July 12, 2018. Retrieved April 3, 2022.
  22. "Pediatric ME/CFS: Fact Sheet for Healthcare Professionals | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. October 10, 2017. Retrieved October 13, 2018.
  23. "ME/CFS in Children: Fact Sheet for Parents/Guardians | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. October 10, 2017. Retrieved October 13, 2018.
  24. "ME/CFS in Children: Fact Sheet for Education Professionals | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. October 10, 2017. Retrieved October 13, 2018.
  25. "Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006 - MEpedia". me-pedia.org. Retrieved October 14, 2018.
  26. Bell, David S. (2009). "Pediatric Chronic Fatigue Syndrome - Fact Sheet" (PDF). njcfsa.org. New Jersey Chronic Fatigue Syndrome Association, Inc.
  27. Colby, Jane (June 2016). "Paediatric ME, CFS, SEID for Families and their GPs" (PDF). Tymes Trust. The Young ME Sufferers Trust.
  28. "Pediatric ME/CFS Diagnosis". Massachusetts ME/CFS & FM. 2017.
  29. Rowe, Peter (May 17, 2017). "A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer". YouTube. SolveCFS.
  30. Dowsett, Elizabeth G.; Colby, Jane (1996). "Long-Term Sickness Absence Due to ME/CFS in UK Schools: An Epidemiological Study with Medical and Educational Implications" (PDF). Journal of Chronic Fatigue Syndrome. 3 (2): 29-42. doi:10.1300/J092v03n02_04.
  31. Jordan, Karen M.; Kolak, Amy M.; Jason, Leonard A. (1997). "Research with Children and Adolescents with Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 3 (2): 3–13. doi:10.1300/j092v03n02_02. ISSN 1057-3321.
  32. Mizuno, K.; Tanaka, M.; Tanabe, H.C.; Joudoi, T.; Kawatani, J.; Shigihara, Y.; Tomoda, A.; Miike, T.; Imai-Matsumura, K.; Sadato, N.; Watanabe, Y. (2015). "Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome". NeuroImage : Clinical. 2015 (9): 355–368. doi:10.1016/j.nicl.2015.09.001. PMID 26594619.
  33. Bakken, Inger J.; Tveito, Kari; Aaberg, Kari M.; Ghaderi, Sara; Gunnes, Nina; Trogstad, Lill; Magnus, Per; Stoltenberg, Camilla; Håberg, Siri E. (September 2, 2016). "Comorbidities treated in primary care in children with chronic fatigue syndrome / myalgic encephalomyelitis: A nationwide registry linkage study from Norway". BMC Family Practice. 17 (1). doi:10.1186/s12875-016-0527-7. ISSN 1471-2296. PMID 27590471.
  34. Shi, Jieyao; Shen, Jie; Xie, Jian; Zhi, Jianming; Xu, Yong (January 1, 2018). "Chronic fatigue syndrome in Chinese middle-school students". insights.ovid.com. Ovid. Retrieved August 11, 2018.