A GP guide to paediatric ME/CFS
Need to know:
- There are key differences between adult and paediatric ME/CFS that affect diagnosis and management.
- Evidence suggests best outcomes are seen for children and adolescents who receive an intensive multidisciplinary approach to care, supported by an ME/CFS specialist team that covers medical, psychological, social, educational and lifestyle domains.
- High incidence of SARS-CoV-2 paediatric infections in Australia could mean many children may benefit from treatment for persistent symptoms (long COVID) managed by paediatricians with expertise in ME/CFS.
Myalgic encephalomyelitis/chronic fatigue syndrome is a complex and disabling multi-system condition with no known cure.
Beyond its hallmark features of persistent fatigue and post-exertional malaise (PEM), which describes a worsening of symptoms following mental or physical exertion, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects cognitive, immune, autonomic and endocrine functions. As such, the condition is associated with a range of multisystemic symptoms, including poor sleep, pain and orthostatic intolerance.1 The illness commonly follows a ‘relapse-and-remit’ pattern, where patients may experience ‘crash days’ after a period of feeling well.2
In younger patients, the prevalence and diagnosis of ME/CFS peaks between the ages of 11 and 19.2 Estimates of the incidence of the condition vary widely (from 0.00006% to 0.5%) across Australian states and territories, as well as other countries.2,3 ME/CFS becomes up to 3-4 times more common in females than males over the age of 12.4,5 The condition often co-occurs with mental health conditions — such as depression or anxiety — joint hypermobility and gastrointestinal issues (including food allergies or irritable bowel syndrome).2,6 Children are more likely to present with sore throats, while adolescents tend to present with headaches.4
Functionally, paediatric ME/CFS patients often miss substantial amounts of school and socialising opportunities and can struggle to participate in their hobbies.7-9 Despite the significant impact of ME/CFS on all aspects of a child’s life, it can often take at least 12 months from the initial onset of symptoms before they receive a diagnosis.3 Estimated recovery rates are better in children and adolescents compared with adults, ranging from 68% to 83%, although there is great variability in how recovery is defined.5,10
Causes and diagnosis
The precise aetiology of ME/CFS is unclear, although some patterns have been observed. For example, most paediatric cases tend to occur after an acute viral infection (such as Epstein–Barr or Ross River virus).3,11 There is currently no diagnostic test for ME/CFS. Diagnosis therefore relies on a thorough clinical history and examination, along with medical investigations to exclude other possible causes of the main ME/CFS symptoms — for example, untreated hypothyroidism, malignancies, active psychiatric conditions.12,13 Recommended medical investigations are shown in box 1.2,3
Several diagnostic criteria are available for paediatric ME/CFS. These include the Canadian Consensus Criteria adapted for paediatrics, Paediatric Primer, and National Institute for Health and Care Excellence guidelines.2,12,13 Illness duration for diagnosis in children and adolescence is three months, compared with six months in adults. Diagnostic criteria for commonly associated conditions — such as orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS) and neurally mediated hypotension — are also available.14
| Box 1. Recommended tests |
| FBC |
| EUC |
| Thyroid function test |
| ESR |
| LFT |
| Epstein–Barr virus serology |
| CRP |
| Coeliac antibodies |
| Ferritin |
| Vitamin B12 |
| Folate |
| Note: Please refer to Rowe et al 20172 for further details |
ME/CFS and long COVID
Recently, many parents’ concerns have focused on the potential long-term effects of SARS-CoV-2 infection in children. However, there are limited data on the prevalence of long COVID or post-COVID-19 conditions in young people compared with adults.15 While some international case studies have drawn a link between SARS-CoV-2 infection and the onset of paediatric ME/CFS, it remains unclear whether the long-term effects of COVID-19 are specific to SARS-CoV-2 infection or are similar to other post-viral conditions that meet criteria for ME/CFS.16 Although the risk of long COVID in children and adolescents is uncertain, the high incidence of SARS-CoV-2 infection means that many children might require treatment for persistent symptoms.17 Cases are currently being referred to paediatricians with expertise in ME/CFS for care.
Current evidence-based management guidelines
A multidisciplinary approach is recommended for ME/CFS, supported by a paediatric ME/CFS specialist team that covers medical, psychological, educational, social, physical and lifestyle domains.13 Recovery rates have been shown to be higher in paediatric patients offered intensive interventional treatment than in those receiving standard care.10 Overall, there is limited high-quality research to guide management of paediatric ME/CFS.18 Existing systematic reviews support the use of CBT-based interventions to help children and adolescents develop new ways of managing difficult thoughts and feelings around their symptoms.20 However, it is important that clinicians first check whether the patient is ready to receive psychological support before offering this as a treatment option.5
International guidelines describe best-practice treatment of paediatric ME/CFS as a balancing act of education, symptom management, and supporting the child and their family.2 Early intervention is critical to maximising outcomes in areas such as fatigue, pain and health-related quality of life.21 The patient should be included in the decision-making process where possible as their goals and symptom reports tend to differ from those of their parents and clinicians.8,9,22
Children and adolescents with ME/CFS report that the most helpful health professionals are those who make them feel understood, respected, validated and reassured, according to qualitative research.5
Management strategies that help the young person regain a sense of control over their lives, particularly in the social and educational domains, are also highly valued.5 With time, the goals of the patient and their family often shift away from symptom reduction and towards building a new life alongside ME/CFS.8
Education
A shared understanding of what ME/CFS might look like for the patient is fundamental to their recovery. The patient, their family and their school may benefit from education about the young person’s condition, its cyclical nature, its impact on everyday life and the best available treatment for their symptoms.23 It is essential schools are aware that ME/CFS is associated with compromised school functioning across multiple domains, with higher levels of fatigue associated with more school absenteeism but not necessarily a reduction in academic performance.7 Engagement with the school to facilitate flexibility and adjustment to activities — such as a modified curriculum, reduced subject load and special consideration for tests and exams — is recommended.13
Symptom management
The treatment of paediatric ME/CFS symptoms is highly individualised.10 Referrals to other specialists may be warranted for patients with more severe endocrine, autonomic or immune symptoms.
Post-exertional malaise
PEM is defined as a worsening of symptoms after minimal physical or cognitive exertion that can occur across multiple domains and may persist for weeks.2
Management strategies include supporting the patient to identify their optimum level of cognitive and physical function and the limits around these. This assists in the provision of guidance on pacing strategies, which can help the young person to stick within these limits and avoid a ‘boom-and-bust’ activity pattern.2
Sleep
Improving sleep quality in paediatric ME/CFS patients is a priority because of the impact of sleep on other areas of wellbeing.24 Managing sleep problems can help to improve patients’ symptoms, function and quality of life.25,26 Management strategies include providing sleep hygiene recommendations and guidance around frequency, duration and timing of daytime naps to avoid disrupting normal circadian rhythms and nocturnal sleep architecture. Prescribing melatonin to facilitate sleep onset and maintenance may also be useful.2
Pain, mood and cognition
It is recommended that supports and adaptations to educational activities are implemented to manage symptoms of pain, mood and cognitive difficulties.13 These may include extra rest breaks, special consideration for assessments and a program that focuses more on engagement and peer connection than academic progress.2
Pharmacological management — for example, pain relief, antidepressants, stimulants — can be helpful, alongside psychological and/or physical therapies, as tolerated by the patient.2 Analgesics that modify the pain pathways, such as low-dose amitriptyline or pregabalin, may be helpful for common ME/CFS pain issues.
POTS and orthostatic intolerance
Orthostatic intolerance, particularly as part of the POTS symptom constellation, is observed in more than one-quarter of ME/CFS patients.3 Interventions to increase fluid volume, in addition to wearing compression shorts or leggings and the use of electrolyte rehydration solutions during activity, may help these symptoms.2
Diet
The patient should be supported to meet their nutritional needs by consuming regular small meals, ensuring adequate salt and fluid intake and adding supplements if indicated by medical investigations.2
Current goals for research and clinical practice
Continued research into potential diagnostic biomarkers, the social and economic impact of ME/CFS and the development of clinical guidelines for ME/CFS management is vital to the future of ME/CFS care in Australia.27 It is also essential to improve the national equity of care through increased service accessibility and clinician understanding of ME/CFS in Australia.3
Tips from the authors
Work in partnership with the child and family to establish a sustainable baseline routine that includes some fun, family time, peer contact and school attendance.
Provide symptom management, particularly with respect to supporting regulation of the sleep–wake cycle and sleep routine.
Children and adolescents with ME/CFS value medical care that provides validation, reassurance and management strategies that focus on regaining control over their lives.
Online resources:
Dr Sarah Knight is a paediatric clinical neuropsychologist, senior research fellow and team leader in neurodisability and rehabilitation at the Murdoch Children’s Research Institute, Victorian Paediatric Rehabilitation Service and department of paediatrics, Melbourne School of Psychological Sciences, University of Melbourne.
Dr Elisha Josev is a paediatric clinical neuropsychologist, senior research officer and co-ordinator of the myalgic encephalomyelitis/chronic fatigue syndrome research program at the Murdoch Children’s Research Institute and department of paediatrics, University of Melbourne.
Associate Professor Adam Scheinberg is a paediatric rehabilitation physician and the statewide medical director of the Victorian Paediatric Rehabilitation Service.
Dr Colette Reveley is a general paediatrician and adolescent physician at The Royal Children’s Hospital, Melbourne.
Dr Fiona McDonald is a general paediatrician at The Royal Children’s Hospital, Melbourne.
Dr Sabine Hennel is a paediatric rehabilitation physician within the Victorian Paediatric Rehabilitation Service, clinic lead of the myalgic encephalomyelitis/chronic fatigue syndrome program at Monash Children’s Hospital and holds an honorary appointment with the department of paediatrics, Monash University, Melbourne.
Tracey Chau is a research assistant at the Murdoch Children’s Research Institute, Melbourne.
References on request from kate.kelso@adg.com.au
