ME/CFS in children and teenagers

How common is it?

International studies put the prevalence of ME/CFS in children and adolescents at around 0.1–0.75%.^1,2,3 In a large US community study, fewer than 5% of the young people who met criteria had ever been diagnosed.² No Australian population study exists; Emerge Australia’s estimate of around 20,000 affected students is an advocacy figure, not a measured one.⁴

• Age: onset peaks between 11 and 19, with a second peak in the 30s. Children as young as 2 have been diagnosed, but it’s uncommon under 10.^1,5 In the Royal Children’s Hospital Melbourne cohort, the average age at diagnosis was 14.8.⁶
• Sex: in adolescence, about 3 to 4 girls for every boy. In younger children the numbers are more even.^1,6

How it starts

Most young people can point to an infection. In the Melbourne cohort of 784 young people, 80% had a clear onset after an infection, most commonly glandular fever (Epstein-Barr virus) in 40%.⁶

The best evidence on what happens after glandular fever comes from a study of 301 US adolescents: 13% met criteria for CFS at 6 months, 7% at 12 months and 4% at 24 months. Every one of the 13 still meeting criteria at two years was female.⁷ The strongest predictor of who developed it was how severe the initial illness was, measured by days spent in bed, not psychological factors.^1,8

Other triggers include other viral infections (CMV in about 10% of the Melbourne cohort), and about a quarter of children have a gradual rather than sudden onset.^6,9 See After COVID vs glandular fever for more on why some people get ME/CFS after an infection.

How it looks in young people

The core features are the same as in adults (post-exertional malaise, unrefreshing sleep, brain fog, feeling worse upright), but some things stand out:^1,9,10

• Dizziness on standing (orthostatic intolerance) is very prominent. In one study, 96% of adolescents with ME/CFS showed POTS or a drop in blood pressure on a standing test.⁵ In a small 2026 German study, 7 of 18 teenagers with ME/CFS (39%) met the criteria for POTS, compared with none of 18 healthy teenagers.¹¹ About 60% of adolescents with ME/CFS have hypermobile joints, compared with about 20% of healthy teenagers.¹
• Headaches, sleep disturbance and cognitive difficulties are the commonest complaints after fatigue. Abdominal pain and rashes are more common than in adults.
• Symptoms vary enormously from day to day and from child to child, which is part of why it’s so often missed.
• School and thinking: problems with attention, processing speed and recall, made worse by poor sleep.

“It’s not school refusal”

This is the most important thing for parents, teachers and doctors to understand. In an Australian study, adolescents with ME/CFS missed on average 42% of the school term, compared with 5% for healthy peers.¹² UK data suggest ME/CFS is the single most common cause of long-term school absence.¹ In a 2026 US CDC study of 40 teenagers with ME/CFS, nearly 9 in 10 had missed school and almost two-thirds were being taught at home; their core symptoms, including post-exertional malaise, were the same as in adults.¹³

But the pattern is the opposite of school refusal. Young people with ME/CFS usually want to attend school and keep up their hobbies, and are prevented by physical limits. With school refusal, symptoms improve once the child is allowed to stay home and disappear on weekends and holidays. With ME/CFS they don’t.^1,9,4

Getting a diagnosis

There’s no single test. Diagnosis rests on the symptom pattern, especially PEM, plus tests to exclude other causes.

• How long? The international paediatric case definition and the UK NICE guideline both allow diagnosis after 3 months of symptoms (NICE says to suspect it after just 4 weeks in children), rather than the 6 months used in some adult definitions. Management should start straight away, before the diagnosis is confirmed.^9,14,1
• Australian practice: the Royal Children’s Hospital Melbourne uses “more than three months” of fatigue made worse by activity, and reports a median of 15.5 months from symptom onset to diagnosis at its clinic, which is far too long.^15,16
• Tests to exclude other causes: the RCH requires, before referral, a full blood count, thyroid, iron studies, coeliac screen, liver and kidney function, CK, ESR, glucose, vitamin D, calcium/magnesium/phosphate, ANA, a urine test and a growth chart, plus standing heart rate and blood pressure at 1 and 5 minutes.¹⁷ Sleep apnoea, thyroid problems and depression as a primary diagnosis need to be considered.
• Referral: NICE recommends children are referred to a paediatrician and then to a paediatric ME/CFS specialist team.¹⁴

What recovery looks like

The outlook for young people is better than for adults, though not uniformly good, and it takes time.

The largest long-term study comes from Melbourne: 784 young people diagnosed at the Royal Children’s Hospital between 1991 and 2009, followed for an average of 8 years.⁶ Observational

• 38% reported recovery by 5 years, and 68% by 10 years. Among those who recovered, the illness lasted an average of 5 years (range 1–15).
• At follow-up, 63% were working or studying full time and 24% part time. But about 20% were still significantly unwell and 5% very unwell.
• Two-thirds had gone on to post-secondary study, slightly above the national average.
• Depression, anxiety or how sick they were at diagnosis did not predict who recovered. Ongoing pain, orthostatic intolerance, anxiety and depression at follow-up were reported as hampering recovery.

A smaller two-year follow-up from the same hospital found 65% still met criteria at about two years, with fatigue, pain and quality of life still worse than healthy peers, so early recovery is the exception.¹⁸

What young people said helped most: being taken seriously, being believed, having control over their own plan, school liaison and advocacy, practical strategies, and treatment of sleep and headaches. They wished for earlier diagnosis, more flexible schools, timely and sensitively offered psychological support, and peer support. 70% had tried alternative therapies, and most regretted the cost.⁶

Managing ME/CFS in a young person

Pacing, adapted for kids

The principle is the same as for adults: stay as active as possible while avoiding post-exertional crashes (the “energy envelope”).¹ See Pacing. The Melbourne clinic builds a plan the young person designs across four areas: education, social contact, physical activity and enjoyable activities, reviewed every few months.⁶ Social connection and something enjoyable matter as much as schoolwork; NICE says education “should not be the only activity they undertake”.¹⁴

Standing up, salt and fluids

Because orthostatic intolerance is so common in this age group, treating it can make a real difference.¹ In adolescents, POTS is defined by a heart rate rise of 40 or more beats per minute on standing (30 in adults), and a 1–2 minute check misses most cases; a 10-minute standing test is needed.¹⁹ Johns Hopkins’ guidance for families covers increased fluids (at least 2 litres a day, with easy access at school), more salt, compression garments or abdominal binders, raising the head of the bed and avoiding heat and prolonged standing, with medications reserved for specialist supervision.^20,14 See Dizziness on standing & POTS.

Sleep, pain and headaches

Paediatric specialists commonly use melatonin or low-dose amitriptyline for sleep, and migraine-style prevention for headaches.^1,6 These are prescribed by the treating doctor. See Sleep.

What to avoid

• Graded exercise therapy. NICE says not to offer “any therapy based on physical activity or exercise as a cure for ME/CFS”, and specifically not fixed-increment graded exercise.¹⁴ Exercise studies in young people have high drop-out because exercise makes them worse.¹
• The Lightning Process. NICE says: “Do not offer the Lightning Process, or therapies based on it”.¹⁴ The one trial in children (SMILE, 2018) reported benefit, but the journal later published a correction acknowledging the primary outcome was changed after recruitment began, and every outcome was self-reported by children coached to think differently about their symptoms.^21,22 RCT
• CBT as a cure. The large UK FITNET-NHS trial of online CBT for adolescents found a small difference at 6 months that had disappeared by 12 months, at a cost the authors called “unlikely to be cost-effective”.²³ RCT Supportive psychological help is different, and worth having. NICE says CBT “may help them manage their symptoms but it is not curative”, should only be offered if the young person wants it, and does not assume the illness is caused by “abnormal” beliefs.¹⁴
• Medicines or supplements sold as cures. NICE: “Do not offer any medicines or supplements to cure ME/CFS.”¹⁴

School in Australia

Your child’s rights

Schools, including private schools, must comply with the Disability Discrimination Act 1992 and the Disability Standards for Education 2005, which require reasonable adjustments so that students with a disability can take part in education “on the same basis” as other students.²⁴ If a school won’t cooperate, the escalation path is the principal, then the state education department, then the Australian Human Rights Commission.

Adjustments that work

Emerge Australia’s guidance for schools, developed with families, suggests:^25,24,4

• An Individual Learning Plan developed with the student, their doctor and the school, with a single point of contact at school
• A summary card for teachers explaining the illness and the plan
• A reduced course load and subject selection based on interest and energy
• Part-time attendance (for example three half-days) rather than full-time attendance that causes crashes
• Rest breaks and a quiet place to lie down
• No pressure to do sport or PE; help to stay socially included at lunchtime
• Extended time, a laptop and rest breaks in exams; remote submission of work
• Adjustments to lighting and noise

Emerge Australia also runs an education portal for schools and provides a flyer for school nurses.

Distance education and hospital schools

Every state has a government distance-education school that accepts students with a medical condition, and hospital schools bridge home, hospital and the enrolled school:

• NSW: distance education for “students with a medical condition” through 11 schools, including Sydney Distance Education High School.²⁶ Hospital schools at Sydney Children’s Hospital (Randwick) and Westmead.²⁷
• Victoria: Virtual School Victoria (Foundation to Year 12), with a “Medical” enrolment category.²⁸ The Royal Children’s Hospital School (Yalingbu Yirramboi) supports students from early years to VCE.²⁹ In the Melbourne cohort, 20% used the Visiting Teacher Service and 16.5% used distance education.⁶
• Queensland: Brisbane School of Distance Education.³⁰
• WA: School of Isolated and Distance Education (SIDE), and the School of Special Educational Needs: Medical and Mental Health, which supports students whose health prevents them attending school and helps them return.^31,32
• SA: Open Access College.³³
• Tasmania, NT and ACT have equivalent programmes; ask your school or education department.

Exam provisions

Each state’s final-year exam authority offers adjustments (rest breaks, extra time, separate rooms, laptops) for medical conditions:

• NSW: NESA’s HSC Exam Provisions Program (formerly “disability provisions”). Schools apply on the student’s behalf.³⁴
• Victoria: VCAA Special Provision, including Special Examination Arrangements and the Derived Examination Score.³⁵
• SA and NT: SACE Special Provisions (1300 322 920).³⁶
• Queensland (QCAA), WA (SCSA), Tasmania (TASC) and ACT (BSSS) each have a scheme; ask the school’s year coordinator early, as applications take time.

University and TAFE

Every tertiary institution has a disability or accessibility service that can set up an access plan covering extensions, exam adjustments, part-time load and recorded lectures.³⁷ Young people in the Melbourne study specifically valued this support.⁶

Financial support for families

• Carer Allowance: $162.60 a fortnight (not taxable, no assets test) for a parent providing daily care to a child with a medical condition; a Health Care Card is issued for the child.^38,39
• Child Disability Assistance Payment: an automatic annual payment of up to $1,000 if you receive Carer Allowance for a child under 16 on 1 July.⁴⁰
• Carer Payment: an income-support pension if caring stops you working; income and assets tested.⁴¹
• Youth Allowance and the Disability Support Pension for the young person themselves from 16. See Centrelink & the DSP.
• NDIS: possible for severe, long-term ME/CFS; the early childhood approach applies under 9. See ME/CFS and the NDIS.

Where to get help in Australia

• Royal Children’s Hospital Melbourne, Chronic Fatigue Syndrome Specialist Clinic: Australia’s main paediatric ME/CFS service. Referral is via a paediatrician, with the tests above completed first.¹⁷ We couldn’t confirm whether other children’s hospitals run dedicated fatigue clinics; ask your paediatrician.
• Emerge Australia: free nurse support and telehealth on 1800 865 321, resources for parents and schools, and support groups.²⁴
• Your GP and a general paediatrician are the starting point everywhere. See Find a doctor.

Long COVID in children

Long COVID does occur in children but is less common than in adults, and most recover within a few months. In a NSW study after the 2021 Delta wave, most children had recovered by 12 weeks; long COVID was “infrequent” but a real burden for those affected, with risk higher over age 11 and with pre-existing conditions.⁴² A review of 14 studies found most had major limitations, and two controlled studies found persistent symptoms no more common in infected than uninfected children.⁴³ Among young Victorians aged 15–29, 11% reported long COVID in a 2023 survey, but only about 1 in 10 of those had a formal diagnosis.⁴⁴ Reinfection roughly doubles the risk of a long COVID diagnosis in children, which is another reason to avoid infections.⁴⁵ See Long COVID in Australia.