Evidence map›Paper›PMID 36456114›Full record

ArticleArchives of disease in childhood2023

Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.

Alexander Peter Royston, Manmita Rai, Amberly Brigden, Sarah Burge, Terry Y Segal, Esther M Crawley

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Archives of disease in childhood, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
0.9field-weighted citation impact, top 26% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Recent research in myalgic encephalomyelitis/chronic fatigue syndrome: an evidence map.Health technology assessment (Winchester, England) · 2025
    Pooled it
  2. Article
  3. Article
  4. Article
  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 4 institutions in 3 countries.

Alexander Peter RoystonCentre for Academic Child Health, University of Bristol Medical School, Bristol, UK ar16623@bristol.ac.uk.ORCID 0000-0002-8105-3213
Manmita RaiKing's Clinical Trial Unit, King's College London Institute of Psychiatry Psychology and Neuroscience, London, UK.
Amberly BrigdenDepartment of Electrical and Electronic Engineering, University of Bristol, Bristol, UK.ORCID 0000-0002-7958-7881
Sarah BurgeCentre for Academic Child Health, University of Bristol Medical School, Bristol, UK.
Terry Y SegalPaediatric Department, University College London Hospitals NHS Foundation Trust, London, UK.ORCID 0000-0002-4420-8810
Esther M CrawleyCentre for Academic Child Health, University of Bristol Medical School, Bristol, UK.ORCID 0000-0002-2521-0747
University of Bristol · GBAt Bristol · GBThe King's College · USUniversity College London Hospitals NHS Foundation Trust · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesPrimary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5-16 years over 13 months. SECONDARY

objectivesto describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis.

designProspective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians was asked if they had assessed a child with severe ME/CFS (screening definition for prevalence and incidence: children (5-16 years) diagnosed with ME/CFS so severe that they are unable to attend school for more than 1 hour a week during the last 6 weeks of the school term).

participantsPatients 5-16 years of age, seen by paediatricians and two large ME/CFS specialist services across the UK and Ireland. OUTCOME MEASURES: Paediatrician-completed questionnaires describing demographics, symptoms, function and treatment, (applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Diagnosis of severe, probable severe or possible severe ME/CFS was made only with evidence of NICE-recommended screening blood tests.

results285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). The incidence rate was 0.90 per million children-years (95% CI 0.43 to 1.65) (1.97 per million children-years (95% CI 1.24 to 2.99)). Median age was 13 years and 58% of cases were female. Median time to diagnosis was 0.47 years.

conclusionsAlthough the incidence of children presenting with severe ME/CFS is low, all were very disabled. In addition, the majority receive little or no education. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.

Indexed as

Fatigue Syndrome, ChronicActivities of Daily LivingAdolescentChildFemaleHumansMaleProspective StudiesSchoolsSurveys and Questionnaireschild healthchronic fatigue syndromepaediatrics

Identifiers

PMID36456114
PMCPMC9985735
OpenAlexW4310597511

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.