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.

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. Young people with ME/CFS are more likely to have a good prognosis than adults, although some may be very severely ill. Up to 2 in 100 children suffer from ME/CFS but is more common in adolescents than in younger children.

Pediatric ME/CFS is defined by the Centers for Disease Control and Prevention (CDC) (ME/CFS), the International Consensus Criteria (ICC) (an ME criterion), and the National Academy of Medicine's (NAM) Systemic Exertion Intolerance Disease (SEID) (an ME/CFS criterion) although it is more common 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 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.

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, 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.

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.

Symptoms of pediatric ME/CFS

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). 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:
  • Difficulty 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 muscle and joint pain. Headaches and stomach pain are more common pain symptoms in children and adolescents. 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.

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.

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

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."

Prognosis

Prognosis in adolescents is considered to be better than in adults.  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/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 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.

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.

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.

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

• atypical adverse reaction to a medication
• Bacterial infections
• Bornaviruses
• Candida albicans
• Enteroviruses
• Fungal infection
• HHV-6
• HIV
• Mycoplasma
• Rubella

Other reported onset triggers:

• Exposure to toxins
• Immune system responses to vaccines
• Overexertion or overtraining
• Physical stress (e.g. injury) or emotional stress

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

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.

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 UK to have ME listed on death certificate.

• Beth French Onset at age 10, recovery began after diagnosis at age 17, severely ill for some time, now fully recovered
• Lynn Gilderdale Onset age 14. TB vaccine onset, 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 Danish government), now improving at home.

• Tom Kindlon Onset age 16. 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.
• Rosa Onset age 17. Disease progressed from meeting SEID criterion to CCC; now disabled.

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

Guides on Pediatric ME/CFS

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
• 2009, Pediatric Chronic Fatigue Syndrome - Fact Sheet
• 2016, ME/CFS in Children - By David S. Bell, MD
• 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

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

• 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)

See also

• David Bell
• Leonard Jason
• Munchausen syndrome by proxy
• Stigma and discrimination

• Epidemiology
• Onset
• Prevalence
• Prognosis
• Primer for family, friends and care providers

• Sex differences in myalgic encephalomyelitis

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 6 months while pediatric cases are diagnosed at three months.
• International Consensus Criteria (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, and SEID, which all require 6 months in adults.
• Systemic Exertion Intolerance Disease (SEID) ME/CFS (SEID) is accurately diagnosed when the 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.

Learn more

• Symptoms and Diagnosis of ME/CFS in Children - CDC
• 2018, The children left bed-bound by fatigue - The Wireless, NZ
• 2018, My son hasn't left the house in a year - SBS - Insight
• 2019, A Heavy Weight To Carry - Teach Primary Magazine article (UK)

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

See Chronic fatigue syndrome advisory committee.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

the condition of being dizzy or on the verge of fainting

lightheadedness the condition of being dizzy or on the verge of fainting

Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.