E3 PreliminaryModerate confidencePEM unclearCross-SectionalPeer-reviewedMachine draft
Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study.
Serafimova, Teona, Ascough, Caitlin, Parslow, Roxanne Morin et al. · BMJ paediatrics open · 2022 · DOI
Quick Summary
This study explored how children with ME/CFS experience pain by interviewing 13 young people (average age 15). Researchers found that pain is very common, highly varied, and significantly impacts daily life—affecting physical activity, eating, schooling, and mental health. Most importantly, the children reported that current treatments don't work well, highlighting an urgent need for better pain management options.
Why It Matters
Pain is severely underrecognized and undertreated in paediatric ME/CFS despite affecting up to two-thirds of patients and worsening outcomes. This research amplifies young patients' voices, documenting the profound disability pain causes and the critical gap in available treatments—providing essential evidence to inform clinical care development and research priorities.
Observed Findings
- Pain descriptions were highly varied and vivid (e.g., 'on fire,' 'being stabbed,' 'like lead') with variable location, frequency, and severity.
- Pain caused severe physical limitation including inability to leave bed, perform self-care, or eat regularly (abdominal pain cases).
- Pain substantially impacted mental health, causing agitation, panic attacks, and emotional distress.
- Children reported social isolation and feelings of missing out due to pain-related activity limitations.
- Existing pain treatments were largely ineffective, with participants reporting medications either provided minimal relief or caused side effects.
Inferred Conclusions
- Pain in paediatric ME/CFS is highly prevalent, variable in presentation, and causes severe multidimensional disability.
- Current pharmacological approaches to pain management in this population are inadequate and represent an unmet clinical need.
- Effective pain treatments must be developed and evaluated specifically for paediatric ME/CFS patients.
Remaining Questions
- What specific pain phenotypes exist in paediatric ME/CFS and what drives this heterogeneity?
- What evidence-based pain management strategies are most effective for this population?
What This Study Does Not Prove
This qualitative study describes pain experiences but does not establish prevalence rates, causal mechanisms, or comparative efficacy of treatments. It cannot determine whether pain is directly caused by ME/CFS pathophysiology versus secondary effects, nor does it provide evidence for specific treatment interventions.
Tags
Symptom:Cognitive DysfunctionPainFatigue
Phenotype:SeverePediatric
Method Flag:Weak Case DefinitionNo ControlsSmall Sample
Metadata
- DOI
- 10.1136/bmjpo-2021-001201
- PMID
- 36053633
- Review status
- Machine draft
- Evidence level
- Early hypothesis, preprint, editorial, or weak support
- Last updated
- 10 April 2026
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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