Pediatric myalgic encephalomyelitis/chronic fatigue syndrome: Difference between revisions

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'''Pediatric''' [[ME/CFS]] "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. Pediatric criteria have been developed."<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref> Children can be diagnosed at 3 months while adults are diagnosed at six months.<ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref>  
<div style="inline"><embedvideo service="youtube" description="'''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." dimensions="400" alignment="right" container="frame">https://www.youtube-nocookie.com/watch?v=I8lsRlUhRps&autoplay=0&rel=0</embedvideo></div>


== Recognized as a Pediatric disease ==
[[File:PEM6.JPG|400px|thumb|right|What the [world] don’t [see] two faces of M.E.<ref>{{Cite web|url=https://twitter.com/SharonTiday/status/1085122891220430848 | title = What the don’t two faces of M.E.pic.twitter.com/DYZVhtyrG5 | last = CFDA #Awareness | first = | date = 2019-01-15 | website = @SharonTiday|language=en|access-date=2019-01-17}}</ref>]]
Pediatric ME/CFS was outlined in the [[Institute of Medicine report]] (IOMR). The [[Massachusetts CFIDS/ME & FM Association]] has produced 6 pages of easy to step through information based on the IOMR and includes additional resources.
[[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|Pediatric myalgic encephalomyelitis and chronic fatigue syndrome]] ([[Myalgic encephalomyelitis|ME]]) and ([[Chronic fatigue syndrome|CFS]]), or [[ME/CFS]], may occur in very young children or teenagers; with children as young as two years old found to be affected.<ref name="ICC" /> Young people with ME/CFS are more likely to have a good prognosis than adults, although some may be [[Severe and very severe ME|very severely ill]].<ref name="ICC" /> Up to 2 in 100 children suffer from ME/CFS but is more common in adolescents than in younger children.<ref name="CDC">{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/index.html | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-13}}</ref>


*[https://www.masscfids.org/pediatric-me-cfs-diagnosis?showall= Pediatric ME/CFS Diagnosis]
Pediatric ME/CFS is defined by the [[Centers for Disease Control and Prevention]] (CDC)<ref name="CDC-factsheet">{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> (ME/CFS), the [[International Consensus Criteria]] (ICC)<ref name="ICC" /> (an ME criterion), and the [[National Academy of Medicine]]'s (NAM) [[Systemic Exertion Intolerance Disease]] (SEID)<ref name="IOM2015" /> (an ME/CFS criterion) although it is more common in adults.<ref name="CDC-adult">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref> "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."<ref name="BellOMF">{{Cite news | url=https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children - by David S. Bell, MD| date = 2016-06-25 | website = Open Medicine Foundation|access-date=2018-08-11|language=en-US}}</ref> 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.<ref name="masscfids">{{Cite web|url=https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="IOM2015" /><ref name="CCC">{{Cite journal | last = Carruthers | first = Bruce | last2 = Jain | first2 = Anil Kumar | last3 = De Meirleir | first3 = Kenny | last4 = Peterson | first4 = Daniel | last5 = Klimas | first5 = Nancy | last6 = Lerner | first6 = A. Martin | last7 = Bested | first7 = Alison | last8 = Flor-Henry | first8 = Pierre | last9 = Joshi | first9 = Pradip | last10 = Powles | first10 = A.C. Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie | authorlink12 = Marjorie van de Sande | date = 2003 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols|url=http://iacfsme.org/Portals/0/pdf/CanadianCaseDefinition.2003.pdf|format = PDF | journal=Journal of Chronic Fatigue Syndrome|volume=11 | pages = 7-36|issue=|quote= | author-link = Bruce Carruthers | authorlink2 = Anil Kumar Jain | author-link3 = Kenny De Meirleir | authorlink4 = Daniel Peterson | author-link5 = Nancy Klimas|doi=10.1300/J092v11n01_02 | authorlink6 = A Martin Lerner | authorlink7 = Alison Bested | authorlink8 = Pierre Flor-Henry | authorlink9 = Pradip Joshi}}</ref><ref name="ICC">{{Cite journal | last = Carruthers | first = Bruce M. | authorlink = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2=Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3=Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald  Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>


'''Page titles'''
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,<ref name="Newton2017" /><ref name="School2018" /> 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.<ref name="BellOMF" />
#Pediatric case definition/diagnostic criteria for ME/CFS
#Exclusionary conditions
#Differential diagnosis
#Pediatric ME/CFS Diagnosis
#More Resources
#References


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]] [https://www.nasn.org/home National Association of School Nurses] (NASN) published ''School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome''.<ref name="School2018">{{Cite journal | last = Friedman | first = Kenneth J. | last2 = Mattey | first2 = Beth | last3 = Newton | first3 = Faith| date = 2018-09-15 | title = School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=http://journals.sagepub.com/doi/full/10.1177/1942602X18795299|journal=NASN School Nurse|language=en|volume=33|issue=6|pages=372–379|doi=10.1177/1942602x18795299|issn=1942-602X|quote= | author-link = Kenneth Friedman | author-link2 = | authorlink3 = Faith Newton | author-link4 = | authorlink5 = |via=}}</ref> The [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC), along with the [[U.S. Department of Health and Human Services|US Department of Health and Human Services]] (HHS) published ''Supporting the Pediatric Needs of Educating Students''.<ref name="Newton2017">{{Cite web|url=https://www.hhs.gov/sites/default/files/2017-06-cfsac-meeting-presentation-supporting-pediatric-needs.pdf | title = Supporting the Pediatric Needs of Educating Students | last = Newton | first = Faith| date = Jun 2017 | website = US Dept. of Health and Human Services|archive-url=|archive-date=|url-status=|access-date= | authorlink = Faith Newton}}</ref>


The [[CDC]] provides Factsheets for Healthcare Professionals, Parents and Education Professionals. (2014)
== Symptoms of pediatric ME/CFS ==
*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric]
The same [[Systemic Exertion Intolerance Disease#Diagnostic criteria|core symptoms]] for adults with ME/CFS are found in pediatric cases: [[chronic fatigue]]; [[post-exertional malaise]] (PEM); [[Sleep dysfunction|sleep problems]]; [[Cognitive dysfunction|problems with thinking]] and [[Memory problems|memory]]; and/or [[orthostatic intolerance]] (OI).<ref name="CDC-symptoms-adults">{{Cite web|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref><ref name="CDC-symptoms">{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/children-symptoms-diagnosis.html | title = Symptoms and Diagnosis of ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref> 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 cycle|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:
** Difficulty [[Insomnia|falling or staying asleep]]
** Daytime sleepiness
** Intense and vivid dreaming
* Unlike adults with ME/CFS, children and adolescents with ME/CFS do not usually have [[Myalgia|muscle]] and [[Arthralgia|joint pain]]. [[Headache]]s and [[abdominal pain|stomach pain]] are more common pain symptoms in children and adolescents.<ref name="JasonL2006paed" /> 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 [[Influenza|flu]] or [[mononucleosis]]. Sometimes, ME/CFS in children might begin gradually.<ref name="CDC-symptoms" />
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.<ref name="BellOMF" />
 
== 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 0.181%.<ref name="Jordan2006">{{Cite journal | last= Jordan | first = Karen M. | last2 = Huang | first2 = Cheng-Fang | last3 = Jason | first3 = Leonard A. | last4 = Richman | first4 = Judith | last5 = Mears | first5 = Cynthia J. | last6 = McCready | first6 = William | last7 = Katz | first7 = Ben Z. | last8 = Ayers | first8 = Penny M. | last9 = Rademaker | first9 = Alfred | date = 2006 | title=Prevalence of Pediatric Chronic Fatigue Syndrome in a Community-Based Sample|url=http://dx.doi.org/10.1300/J092v13n02_04|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=13|issue=2-3 | pages = 75–78|doi=10.1300/j092v13n02_04|issn=1057-3321|via=|quote= | author-link = Karen Jordan | author-link2 = | authorlink3 = Leonard Jason | author-link4 = | authorlink5 = Cyn | authorlink7 = Ben Katz}}</ref> A 2011 study in the [[Netherlands]] reported a prevalence rate of 111 per 100 000 adolescents or 0.111%.<ref name="Nijhof2011">{{Cite journal | last = Nijhof | first = S. L. | last2 = Maijer | first2 = K. | last3 = Bleijenberg | first3 = G. | last4 = Uiterwaal | first4 = C. S.P.M. | last5 = Kimpen | first5 =  J.L.L. |  last6 = van de Putte | first6 = E.M. |  date=2011-04-18 | title = Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity|url=http://dx.doi.org/10.1542/peds.2010-1147|journal=PEDIATRICS|volume=127|issue=5| pages = e1169–e1175|doi=10.1542/peds.2010-1147|issn=0031-4005|via=}}</ref>
 
In 2012, the [[Centers for Disease Control and Prevention|CDC]] estimated less than 20% of (adult) [[United States|Americans]] that have [[chronic fatigue syndrome]] (CFS) were diagnosed.<ref>{{Cite web|url=https://www.cdc.gov/cfs/diagnosis/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)| date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-11}}</ref> 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."<ref>{{Cite news | url=http://www.prohealth.com/library/showarticle.cfm?libid=13672 | title = A Profile of ME/CFS Patients - How Many Years and How Many Doctors? - Prohealth| date = 2008-05-16|work=Prohealth|access-date=2018-08-11|language=en-US}}</ref>
 
== Prognosis ==
[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]] in adolescents is considered to be better than in adults.<ref name=":22">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis  {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="Rowe2017" />  [[Fred Gill|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 [[1985 Lyndonville outbreak|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 ([[Luiza Rangel|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 [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis|IACFS/ME]], [[Katherine 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|peer-review]] publication. In its 2015 report (p.183, 213), the [[National Academy of Medicine|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.<ref name="BellOMF" /><blockquote>One study of young adults followed for fifteen years demonstrated clear improvement in activity, but not illness resolution<sup>8</sup>. 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 severity<sup>12</sup>. It is rare for an adolescent to become completely free of the disease<sup>13</sup>.<ref name="BellOMF" /></blockquote>
==Infectious onsets of ME/CFS ==
Particularly likely to cause ME/CFS are:
* [[Epstein-Barr virus]]
* [[Ross River virus]]
* [[Coxiella burnetii]]
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.<ref name="CDC-causes">{{Cite web|url=https://www.cdc.gov/me-cfs/about/possible-causes.html | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | last = | first = | date = Jul 12, 2018 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|url-status=|access-date=2022-04-03}}</ref><ref name="CDC-symptoms" />
 
'''Other infections studied in relation to ME/CFS but not necessarily causative:'''
<div style="column-count:2;">
* atypical adverse reaction to a medication
* [[bacterial infection|Bacterial infections]]
* [[Bornavirus]]es
* [[Candida albicans]]
* [[Enterovirus]]es
* [[Fungal infection]]
* [[Human herpesvirus 6|HHV-6]]
* [[HIV]]
* [[Mycoplasma]]
* [[Category:Parasitic diseases|Parasitic infection]]
* [[Rubella]]<ref name="Rowe2017" /><ref name="CDC-causes" />
</div>
 
'''Other reported onset triggers:'''
* Exposure to [[Chemical sensitivity|toxin]]s
* Immune system responses to [[vaccine]]s
* Overexertion or [[Overtraining syndrome|overtraining]]
* Physical stress (e.g. injury) or emotional [[stress]]<ref name="Rowe2017" /><ref name="CDC-causes" />
 
Many [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] have been attributed to a [[flu-like illness]] including [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], NV, [[1953 Maryland outbreak|Rockville, MD]], and the [[1984 Tapanui & West Otago Outbreak|Tapanui & West Otago, New Zealand Outbreak]] to name a few.
 
==Risk factors==
[[Gene]]s 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 [[Influenza|flu]].<ref name="CDC-causes" />
{{See also|Genetics of chronic fatigue syndrome}}
 
== Pediatric onset patients  ==
Please read their pages for more information.
* [[Merryn Crofts]] Onset age 15. Died of ME; second in [[United Kingdom|UK]] to have ME listed on death certificate.
 
* [[Beth French]] Onset at age 10, recovery began after diagnosis at age 17, [[Severe and very severe ME|severely ill]] for some time, now fully recovered
* [[Lynn Gilderdale]] Onset age 14. TB [[vaccine]] onset, [[Severe and very severe ME|severely ill]] 17 yrs. prior to an assisted suicide.
* [[Emily Collingridge]] Onset age 6. Mumps triggered ME. Severely ill from age 14, died age 30.
* [[Karina Hansen]] Onset as adult teenager, sanctioned as mental health patient for 3 1/2 yrs (by [[Denmark|Danish]] government), now improving at home.
 
* [[Tom Kindlon]] Onset age 16. [[Severe and very severe ME|Wheelchair bound requiring full time care]], also publishes research on ME/CFS.
* [[Ryan Prior]] became ill while attending high school. Upon graduating college, Ryan and his then-girlfriend, [[Nicole Castillo]], co-directed ''[[Forgotten Plague]].''
* [[Naomi Whittingham]] Onset age 12. Severely ill.
* [[:File:Rosa SEID.JPG|Rosa]] Onset age 17. Disease progressed from meeting [[Systemic Exertion Intolerance Disease|SEID]] criterion to [[Canadian Consensus Criteria|CCC]]; now disabled.
 
== School nurse guides on Pediatric ME/CFS ==
* 2017, [https://www.hhs.gov/sites/default/files/2017-06-cfsac-meeting-presentation-supporting-pediatric-needs.pdf Supporting the Pediatric Needs of Educating Students]
* 2018, [http://journals.sagepub.com/doi/full/10.1177/1942602X18795299 School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="School2018" />
 
== Guides on Pediatric ME/CFS ==
 
=== Government ===
* 2015, [https://www.nap.edu/read/19012/chapter/8 Pediatric ME/CFS] by the NAM<ref name="IOM2015">{{Cite book | last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/
|isbn=0309316898 | pmid =  25695122
|doi = 10.17226/19012|pages=181|via=}}</ref> [[United States|US]]
 
* 2018, ''Fact Sheets'' for [https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html healthcare professionals],<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> [https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-parents-guardians.html parents and guardians],<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-parents-guardians.html | title = ME/CFS in Children: Fact Sheet for Parents/Guardians {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and [https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-educational-professional.html education professionals] by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-educational-professional.html | title = ME/CFS in Children: Fact Sheet for Education Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> US
 
=== Research groups ===
* 2006, Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome<ref name="JasonL2006paed" /> [http://solvecfs.org/wp-content/uploads/2013/06/pediatriccasedefinitionshort.pdf (Full Text)] US
* 2006, [[Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006]] - entire issue devoted to pediatric ME/CFS<ref>{{Cite web|url=https://www.me-pedia.org/wiki/Journal_of_Chronic_Fatigue_Syndrome:_Volume_13,_Issue_2-3,_2006 | title = Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006 - MEpedia|website=me-pedia.org|language=en|access-date=2018-10-14}}</ref>
* 2009, [http://www.njcfsa.org/wp-content/uploads/2009/12/3-3-NJCFSA-CFS-in-Children-Adolescents.pdf Pediatric Chronic Fatigue Syndrome - Fact Sheet]<ref>{{Cite web|url=http://www.njcfsa.org/wp-content/uploads/2009/12/3-3-NJCFSA-CFS-in-Children-Adolescents.pdf | title = Pediatric Chronic Fatigue Syndrome - Fact Sheet | last = Bell | first = David S. | authorlink =  | date = 2009 |  website = njcfsa.org|publisher=New Jersey Chronic Fatigue Syndrome Association, Inc|archive-url=|archive-date=|url-status=|access-date=}}</ref>
* 2016, [https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - By David S. Bell, MD]<ref name="BellOMF" />
* 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer<ref name="Rowe2017">{{Cite journal | last = Rowe | first = Peter C. | authorlink = Peter Rowe | last2 = Underhill | first2 = Rosemary A. | authorlink2=Rosemary Underhill | last3 = Friedman | first3 = Kenneth J. | authorlink3 =Kenneth Friedman | last4 = Gurwitt | first4 = Alan | author-link4 = Alan Gurwitt | first5 = Marvin S. | last5 = Medow | author-link5 = Marvin Medow | last6 = Schwartz | first6 = Malcolm S. | authorlink6 = Malcolm Schwartz | last7 = Speight | first7 = Nigel | authorlink7 = Nigel Speight | last8 = Stewart | first8 = Julian M. | authorlink8 = Julian Stewart | last9 = Vallings | first9 = Rosamund | authorlink9 = Rosamund Vallings | last10 = Rowe | first10 = Katherine | authorlink10=Katherine Rowe | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|pages=121|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> [https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full (Full Text)] US
 
=== Advocacy groups ===
* 2016, [http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs]<ref name="tymestrust">{{Cite web|url=https://www.tymestrust.org/pdfs/mecfsseid.pdf | title = Paediatric ME, CFS, SEID for Families and their GPs | last = Colby | first = Jane | date = Jun 2016 | website = Tymes Trust|publisher=The Young ME Sufferers Trust|archive-url=|archive-date=|url-status=|access-date=}}</ref> [[United Kingdom|UK]]
 
* 2017, [https://www.masscfids.org/pediatric-me-cfs-diagnosis Pediatric ME/CFS Diagnosis]<ref name="massmecfs">{{Cite web|url=https://www.massmecfs.org/pediatric-me-cfs-diagnosis | title = Pediatric ME/CFS Diagnosis | last = | first = | date = 2017 | website = Massachusetts ME/CFS & FM|archive-url=|archive-date=|url-status=|access-date=}}</ref> US
 
== Webinar ==
*2017, [https://www.youtube.com/watch?v=_WqGmHpL6MI A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer]<ref>{{Cite web|url=https://www.youtube.com/watch?v=_WqGmHpL6MI | title = A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer | last=Rowe | first = Peter| date = 2017-05-17 | website = YouTube|publisher=SolveCFS|archive-url=|archive-date=|url-status=|access-date=}}</ref>  "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 ==
== Charities ==
[[Tymes Trust]] is a UK charity dedicated to helping parents and guardians understand ME/CFS in children and navigate social services, health care and the school system.  
[[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.  
*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)
==Notable studies ==
* 1996, Long-term sickness absence due to ME/CFS in UK schools; an epidemiological study with medical and educational implications.<ref name="Dowsett, Colby, 1996">{{Cite journal | last1 = Dowsett | first1 = Elizabeth G. | authorlink1 = Elizabeth Dowsett | last2 = Colby | first2 = Jane| authorlink2 = Jane Colby | title = Long-Term Sickness Absence Due to ME/CFS in UK Schools: An Epidemiological Study with Medical and Educational Implications | journal = Journal of Chronic Fatigue Syndrome | volume = 3 | issue = 2  | page = 29-42 | date = 1996
| doi = 10.1300/J092v03n02_04
| url = http://www.tymestrust.org/pdfs/dowsettcolby.pdf }}</ref> [https://www.tymestrust.org/pdfs/dowsettcolby.pdf (Full text)]


==Notable studies==
*1997, Research with Children and Adolescents with [[Chronic fatigue syndrome|Chronic Fatigue Syndrome]]: Methodologies, Designs, and Special Considerations<ref>{{Cite journal | last= Jordan | first = Karen M. | last2 = Kolak | first2 = Amy M. | last3 = Jason | first3 = Leonard A. | date = 1997 | title=Research with Children and Adolescents with Chronic Fatigue Syndrome|url=https://www.tandfonline.com/doi/abs/10.1300/J092v03n02_02|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=3|issue=2|pages=3–13|doi=10.1300/j092v03n02_02|issn=1057-3321|via=}}</ref> [http://dx.doi.org/10.1300/J092v03n02_02 (Abstract)]
*2016, [https://www.ncbi.nlm.nih.gov/pubmed/27590471/ Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway.]<blockquote> "Conclusions: This large nationwide registry linkage study confirms that the clinical picture in CFS/ME is complex. Children with CFS/ME were frequently diagnosed with infections, supporting the hypothesis that infections may be involved in the causal pathway. The long time span often observed from the first diagnosis of weakness / general tiredness to the diagnosis of CFS/ME might indicate that the treatment of these patients is sometimes not optimal."<ref name="Bakken, 2016"/></blockquote>
*2006, A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome<ref name="JasonL2006paed">{{Cite journal | last1 = Jason | first1 = Leonard A  | authorlink1 = Leonard Jason | last2 = Jordan | first2 = Karen | authorlink2 = Karen Jordan | last3 = Miike | first3 = Teruhisa | authorlink3 = Teruhisa Miike | last4 = Bell | first4 = David S  | authorlink4 = David Bell | last5 = Lapp | first5 = Charles  | authorlink5 = Charles Lapp | last6 = Torres-Harding | first6 = Susan | authorlink6 = Susan Torres-Harding | last7 = Rowe | first7 = Kathy | authorlink7 = Kathy Rowe | last8 = Gurwitt | first8 = Alan  | authorlink8 = Alan Gurwitt | last9 = De Meirleir | first9 = Kenny | authorlink9 = Kenny de Meirleir | last10 = Van Hoof | first10 = Elke LS | authorlink10 = Elke Van Hoof | title = A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | journal = Journal of Chronic Fatigue Syndrome | volume = 13 | issue = 2-3 | pages = 1-44 | date = 2006 | doi = 10.1300/J092v13n02_01 }}</ref> [http://solvecfs.org/wp-content/uploads/2013/06/pediatriccasedefinitionshort.pdf (Full Text)]
*2015, [http://www.ncbi.nlm.nih.gov/pubmed/26594619 Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome]<blockquote>"Abstract: The ability to divide one's attention deteriorates in patients with childhood chronic fatigue syndrome (CCFS). We conducted a study using a dual verbal task to assess allocation of attentional resources to two simultaneous activities (picking out vowels and reading for story comprehension) and functional magnetic resonance imaging. Patients exhibited a much larger area of activation, recruiting additional frontal areas. The right middle frontal gyrus (MFG), which is included in the dorsolateral prefrontal cortex, of CCFS patients was specifically activated in both the single and dual tasks; this activation level was positively correlated with motivation scores for the tasks and accuracy of story comprehension. In addition, in patients, the dorsal anterior cingulate gyrus (dACC) and left MFG were activated only in the dual task, and activation levels of the dACC and left MFG were positively associated with the motivation and fatigue scores, respectively. Patients with CCFS exhibited a wider area of activated frontal regions related to attentional resources in order to increase their poorer task performance with massive mental effort. This is likely to be less efficient and costly in terms of energy requirements. It seems to be related to the pathophysiology of patients with CCFS and to cause a vicious cycle of further increases in fatigue."<ref name="Mizuno, 2015"/></blockquote>
*2011, Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity.<ref name="Nijhof2011" /> [http://pediatrics.aappublications.org/content/127/5/e1169.full (Full Text)]
*2015, Pediatric ME/CFS - [[Institute of Medicine report|Institute of Medicine Report]] - The National Academies Press<ref name="IOM2015" /> [https://www.nap.edu/read/19012/chapter/8#201 (Full Text)]
*2015, Less efficient and costly processes of [[frontal cortex]] in childhood chronic fatigue syndrome<ref name="Mizuno, 2015">{{Cite journal | last1 = Mizuno | first1 = K.  | authorlink1 = | last2 = Tanaka | first2 = M. | authorlink2 = | last3 = Tanabe | first3 = H.C. | authorlink3 = | last4 = Joudoi | first4 = T. | authorlink4 = | last5 = Kawatani | first5 = J. | authorlink5 = | last6 = Shigihara | first6 = Y. | authorlink6 = | last7 = Tomoda | first7 = A. | authorlink7 = | last8 = Miike | first8 = T. | authorlink8 = | last9 = Imai-Matsumura | first9 = K.  | authorlink9 = | last10 = Sadato | first10 = N. | author-link10 = | last11 = Watanabe | first11 = Y. | authorlink11 = Yasuyoshi Watanabe | title = Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome | journal = NeuroImage : Clinical | volume = 2015 | issue = 9 | page = 355–368 | date = 2015 | pmid = 26594619 | url = https://pubmed.ncbi.nlm.nih.gov/26594619 | doi = 10.1016/j.nicl.2015.09.001  }}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4589845/ (Full Text)]
*2016, Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from [[Norway]]<ref>{{Cite journal | last = Bakken | first = Inger J. | last2 = Tveito | first2 = Kari | last3 = Aaberg | first3 = Kari M. | last4 = Ghaderi | first4 = Sara | last5 = Gunnes | first5 = Nina | last6 = Trogstad | first6 = Lill | last7 = Magnus | first7 = Per | last8 = Stoltenberg | first8 = Camilla | last9 = Håberg | first9 = Siri E. | date = 2016-09-02 | title = Comorbidities treated in primary care in children with chronic fatigue syndrome / myalgic encephalomyelitis: A nationwide registry linkage study from Norway|url=https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0527-7|journal=BMC Family Practice|language=en|volume=17|issue=1|pages=|doi=10.1186/s12875-016-0527-7|issn=1471-2296|pmc=|pmid=27590471|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5010760/ (Full text)]
*2018, Chronic fatigue syndrome in [[Chinese]] middle-school students<ref>{{Cite web|url=https://insights.ovid.com/crossref?an=00005792-201801260-00037 | title = Chronic fatigue syndrome in Chinese middle-school students | last = Shi | first = Jieyao | last2 = Shen | first2 = Jie | date = 2018-01-01 | website = insights.ovid.com|publisher=Ovid|language=en|archive-url=|archive-date=|url-status=|access-date=2018-08-11 | last3 = Xie | first3 = Jian | last4 = Zhi | first4 = Jianming | last5 = Xu | first5 = Yong}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5794388/ (Full Text)]


== Learn more ==
== See also ==
* [[David Bell]]
* [[Leonard Jason]]
* [[Munchausen syndrome by proxy]]
* [[Stigma and discrimination]]
 
*[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
*[[Onset of ME/CFS|Onset]]
*[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]]
*[[Prognosis]]
*[[Primer for family, friends and care providers]]
*[[Primer for family, friends and care providers]]


==References==
*[[Sex differences in myalgic encephalomyelitis]]
<references>
=== Generally accepted criteria for diagnosis ===
*[[Canadian Consensus Criteria]] (CCC)<ref name="CCC" />  A diagnosis of moderate and severe forms of [[ME/CFS]] are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
*[[International Consensus Criteria]] (ICC)<ref name="ICC" />  This criteria will accurately diagnose [[myalgic encephalomyelitis]] (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, [[Fukuda criteria|Fukuda]], and [[Systemic Exertion Intolerance Disease|SEID]], which all require 6 months in adults.
*[[Systemic Exertion Intolerance Disease]] (SEID)<ref name="IOM2015" /> ME/CFS ([[Systemic Exertion Intolerance Disease|SEID]]) is accurately diagnosed when the [[Systemic Exertion Intolerance Disease#Diagnostic criteria|core symptoms]] are met. The [[Institute of Medicine report]] as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.


<ref name="Mizuno, 2015">
== Learn more ==
{{Citation
*[https://www.cdc.gov/me-cfs/me-cfs-children/children-symptoms-diagnosis.html Symptoms and Diagnosis of ME/CFS in Children] - CDC
| last1  = Mizuno                  | first1 = K.                  | authorlink1 =  
*2018, [http://thewireless.co.nz/articles/the-children-left-bed-bound-by-fatigue The children left bed-bound by fatigue] - The Wireless, NZ
| last2  = Tanaka                  | first2 = M.                   | authorlink2 =
*2018, [https://www.sbs.com.au/news/insight/article/2018/10/16/my-son-hasnt-left-house-year My son hasn't left the house in a year] - SBS - Insight
| last3  = Tanabe                  | first3 = H.C.                   | authorlink3 =
*2019, [https://twitter.com/chicaguapa/status/1123531859999318016/photo/1?ref_src=twsrc%5Etfw%7Ctwcamp%5Etweetembed%7Ctwterm%5E1123531859999318016&ref_url=https%3A%2F%2Fs9e.github.io%2Fiframe%2Ftwitter.min.html%231123531859999318016 A Heavy Weight To Carry] -  Teach Primary Magazine article (UK)
| last4  = Joudoi                | first4 = T.                   | authorlink4 =
| last5  = Kawatani                  | first5 = J.                   | authorlink5 =
| last6  = Shigihara                  | first6 = Y.                   | authorlink6 =
| last7  =  Tomoda                  | first7 = A                  | authorlink7 =
| last8  =  Miike                  | first8 = T                  | authorlink8 =
| last9  =  Imai-Matsumura                | first9 = K                  | authorlink9 =
| last10  = Sadato                  | first10 = N                  | authorlink10 =
| last11  = Watanabe                  | first11 = Y                  | authorlink11 =
| title  = Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome
| journal = NeuroImage : Clinical  | volume = 2015  | issue = 9  | page = 355–368
| date    = 2015
| pmid    = 26594619
| doi    = 10.1016/j.nicl.2015.09.001
}}
</ref>


<ref name="Bakken, 2016">
==References==
{{Citation
{{Reflist}}
| last1  = Bakken                  | first1 = IJ                  | authorlink1 =  
| last2  = Tveito                  | first2 = K                  | authorlink2 =
| last3  = Aaberg                  | first3 = KM                  | authorlink3 =
| last4  = Ghaderi                  | first4 = S                  | authorlink4 =
| last5  = Gunnes                  | first5 = N                  | authorlink5 =
| last6  = Trogstad                  | first6 = L                  | authorlink6 =
| last7  = Magnus                | first7 = P                  | authorlink7 =
| last8  = Stoltenberg                | first8 = C                  | authorlink8 =
| last9  = Haberg                | first9 = SE                  | authorlink9 =
| title  = Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway
| journal = BMC Family Practice    | volume = 17  | issue = 1  | page = 128
| date    = 2016
| pmid    = 27590471
| doi    = 10.1186/s12875-016-0527-7
}}
</ref>
 
</references>
 
[[Category:Triggers and risk factors]]


{{stub}}
[[Category:Core topics]]

Latest revision as of 15:02, April 3, 2023

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.
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