{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,4]],"date-time":"2026-11-04T07:17:41Z","timestamp":1793776661026,"version":"4.6.1"},"reference-count":28,"publisher":"BMJ","issue":"4","license":[{"start":{"date-parts":[[2025,4,2]],"date-time":"2025-04-02T00:00:00Z","timestamp":1743552000000},"content-version":"unspecified","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"National Institute for Health"},{"name":"Care Research Exeter Biomedical Research Centre"},{"DOI":"10.13039\/100009984","name":"ME Association","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100009984","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2025,3,10]]},"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>This study aims to provide an in-depth analysis of the symptoms, coexisting conditions and service utilisation among people with myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) and long COVID. The major research questions include the clustering of symptoms, the relationship between key factors and diagnosis time, and the perceived impact of National Institute for Health and Care Excellence (NICE) guidelines on patient care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Cross-sectional survey using secondary data analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Community-based primary care level across the UK, incorporating online survey participation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>A total of 10\u2009458 individuals responded to the survey, of which 8804 confirmed that they or a close friend\/family member had ME\/CFS or long COVID. The majority of respondents were female (83.4%), with participants from diverse regions of the UK.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Primary and secondary outcome measures<\/jats:title>\n                    <jats:p>Primary outcomes included prevalence and clustering of symptoms, time to diagnosis, and participant satisfaction with National Health Service (NHS) care, while secondary outcomes focused on symptom management strategies and the perceived effect of NICE guidelines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Fatigue (88.2%), postexertional malaise (78.2%), cognitive dysfunction (88.4%), pain (87.6%) and sleep disturbances (88.2%) were the most commonly reported symptoms among participants with ME\/CFS, with similar patterns observed in long COVID. Time to diagnosis for ME\/CFS ranged widely, with 22.1% diagnosed within 1\u20132 years of symptom onset and 12.9% taking more than 10 years. Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME\/CFS and 14.4% for long COVID).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>ME\/CFS and long COVID share overlapping but distinct symptom clusters, indicating common challenges in management. The findings highlight significant delays in diagnosis and low satisfaction with specialist services, suggesting a need for improved self-management resources and better-coordinated care across the NHS.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2024-094658","type":"journal-article","created":{"date-parts":[[2025,4,3]],"date-time":"2025-04-03T02:18:15Z","timestamp":1743646695000},"page":"e094658","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":15,"title":["Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis\/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK"],"prefix":"10.1136","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8829-2217","authenticated-orcid":false,"given":"Maedeh","family":"Mansoubi","sequence":"first","affiliation":[{"name":"Medical School, University of Exeter, Exeter, UK"},{"name":"NIHR, BioMedical Research Centre (BRC), Medical School, University of Exeter, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Richards","sequence":"additional","affiliation":[{"name":"Medical School, University of Exeter, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martine","family":"Ainsworth-Wells","sequence":"additional","affiliation":[{"name":"ME Association, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Russell","family":"Fleming","sequence":"additional","affiliation":[{"name":"ME Association, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3602-2231","authenticated-orcid":false,"given":"Phaedra","family":"Leveridge","sequence":"additional","affiliation":[{"name":"Medical School, University of Exeter, Exeter, UK"},{"name":"NIHR, BioMedical Research Centre (BRC), Medical School, University of Exeter, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles","family":"Shepherd","sequence":"additional","affiliation":[{"name":"ME Association, Buckingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2933-5213","authenticated-orcid":false,"given":"Helen","family":"Dawes","sequence":"additional","affiliation":[{"name":"Medical School, University of Exeter, Exeter, UK"},{"name":"NIHR, BioMedical Research Centre (BRC), Medical School, University of Exeter, Exeter, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2025,4,2]]},"reference":[{"key":"2025121422502823000_15.4.e094658.1","unstructured":"ME Research UK . An overview of me\/cfs. 2024. Available: https:\/\/www.meresearch.org.uk\/an-overview-of-me-cfs\/"},{"key":"2025121422502823000_15.4.e094658.2","unstructured":"World Health Organization . International classification of diseases (icd-10). 2016. Available: https:\/\/www.who.int\/classifications\/icd\/en\/"},{"key":"2025121422502823000_15.4.e094658.3","unstructured":"National Institute for Health and Care Excellence . Myalgic encephalomyelitis (or encephalopathy)\/chronic fatigue syndrome: diagnosis and management (nice guideline ng206). 2021. Available: https:\/\/www.nice.org.uk\/guidance\/ng206"},{"key":"2025121422502823000_15.4.e094658.4","doi-asserted-by":"crossref","first-page":"164","DOI":"10.1097\/NNR.0000000000000565","article-title":"Post-COVID-19 Syndrome","volume":"71","author":"Pierce","year":"2022","journal-title":"Nurs Res"},{"key":"2025121422502823000_15.4.e094658.5","doi-asserted-by":"publisher","DOI":"10.1080\/07853890.2022.2076901"},{"key":"2025121422502823000_15.4.e094658.6","doi-asserted-by":"crossref","DOI":"10.3389\/fmicb.2021.698169","article-title":"Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms","volume":"12","author":"Proal","year":"2021","journal-title":"Front Microbiol"},{"key":"2025121422502823000_15.4.e094658.7","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehac031"},{"key":"2025121422502823000_15.4.e094658.8","doi-asserted-by":"crossref","DOI":"10.3389\/fmed.2023.1187163","article-title":"ME\/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature","volume":"10","author":"Komaroff","year":"2023","journal-title":"Front Med (Lausanne)"},{"key":"2025121422502823000_15.4.e094658.9","unstructured":"National Institute for Health and Care Excellence . COVID-19 rapid guideline: managing covid-19 (nice guideline ng188). 2021. Available: https:\/\/www.nice.org.uk\/guidance\/ng188"},{"key":"2025121422502823000_15.4.e094658.10","doi-asserted-by":"crossref","DOI":"10.1136\/bmjpo-2023-002436","article-title":"Management of severe ME\/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study","volume":"8","author":"Royston","year":"2024","journal-title":"BMJ Paediatr Open"},{"key":"2025121422502823000_15.4.e094658.11","doi-asserted-by":"publisher","DOI":"10.1007\/s00038-020-01390-7"},{"key":"2025121422502823000_15.4.e094658.12","doi-asserted-by":"publisher","DOI":"10.1016\/j.jinf.2020.03.041"},{"key":"2025121422502823000_15.4.e094658.13","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2020-040569","article-title":"Study protocol for the COPE study: COVID-19 in Older PEople: the influence of frailty and multimorbidity on survival. A multicentre, European observational study","volume":"10","author":"Price","year":"2020","journal-title":"BMJ Open"},{"key":"2025121422502823000_15.4.e094658.14","first-page":"E1037","article-title":"Graph Measure Based Connectivity in Chronic Pain Patients: A Systematic Review","volume":"24","author":"Lenoir","year":"2021","journal-title":"Pain Physician"},{"key":"2025121422502823000_15.4.e094658.15","doi-asserted-by":"crossref","DOI":"10.1186\/1741-7015-4-33","article-title":"Communicating population health statistics through graphs: a randomised controlled trial of graph design interventions","volume":"4","author":"Muscatello","year":"2006","journal-title":"BMC Med"},{"key":"2025121422502823000_15.4.e094658.16","unstructured":"Lenoir D , Cagnie B , Verhelst H , et al . 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