{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,24]],"date-time":"2026-10-24T09:38:06Z","timestamp":1792834686415,"version":"4.5.0"},"reference-count":98,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Prim Care Community Health"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This study explored the epistemic barriers affecting the recognition and care of Long COVID. It sought to understand how uncertainty is produced, distributed, and navigated among clinicians, researchers, and patients, and how these dynamics shape care pathways and patient experiences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      We conducted a qualitative analysis grounded in more than 400 accounts of clinical encounters, alongside more than 100 patient testimonies collected through the\n                      <jats:italic toggle=\"yes\">Long Covid Belgium<\/jats:italic>\n                      organisation. Informed by interdisciplinary socio-medical scholarship, the analysis examined how Long COVID is narrated, negotiated, and recognised across healthcare and institutional pathways.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Clinical uncertainty was unevenly distributed among clinicians, researchers, and patients. From the patient perspective, these asymmetries frequently manifested as symptom minimisation, psychosocial reframing, delayed investigation, and fragmented care. Persistent gaps in recognition and care were linked to epistemic injustice and gender bias, alongside limitations associated with positivist medical training models. In response, patients increasingly drew on biomedical evidence and collective forms of lay knowledge, fostering the emergence of \u201cexpert patients\u201d.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Long COVID may be understood as a \u201ctotal social fact,\u201d revealing structural vulnerabilities within and beyond healthcare systems. More integrated, reflexive, and relational models of care are needed to improve recognition and management while reducing iatrogenic risk. The findings identify actionable pathways towards more epistemically responsible, coordinated, and patient-attuned care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/21501319261495377","type":"journal-article","created":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T07:35:57Z","timestamp":1792568157000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Knowing Long COVID: Epistemic Barriers to Recognition and Care"],"prefix":"10.1177","volume":"17","author":[{"given":"Marc","family":"Jamoulle","sequence":"first","affiliation":[{"name":"Universit\u00e9 Catholique de Louvain (CAMG\u2013UCLouvain), Brussels, Belgium, Brussels, Belgium"},{"name":"Business Management Systems, University of Li\u00e8ge (HEC\u2013ULi\u00e8ge)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1914-9983","authenticated-orcid":false,"given":"Martin","family":"Spanoghe","sequence":"additional","affiliation":[{"name":"Haute Ecole Provinciale de Hainaut Condorcet"},{"name":"Long Covid Belgium (patient Organisation)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bram","family":"Rolus","sequence":"additional","affiliation":[{"name":"Long Covid Belgium (patient Organisation)"},{"name":"Rolus Bouwconsult"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"Thielemans","sequence":"additional","affiliation":[{"name":"Centre Hospitalier EpiCURA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Widmer","sequence":"additional","affiliation":[{"name":"ASMPP Unisant\u00e9, University of Lausanne"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,10,21]]},"reference":[{"key":"e_1_3_8_2_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41579-022-00846-2"},{"key":"e_1_3_8_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.lanepe.2025.101536"},{"key":"e_1_3_8_4_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70290"},{"key":"e_1_3_8_5_2","article-title":"Long COVID as a Tracer of Care Fragmentation: Reconstructing Patient Care Trajectories from Belgian Health System Metadata","author":"Jamoulle M","year":"2026","unstructured":"Jamoulle M, Vander Stichele RH, Ittoo A. Long COVID as a Tracer of Care Fragmentation: Reconstructing Patient Care Trajectories from Belgian Health System Metadata. Available at. ORBi-University of Li\u00e8ge. 2026. https:\/\/orbi.uliege.be\/handle\/2268\/344281","journal-title":"ORBi-University of Li\u00e8ge"},{"key":"e_1_3_8_6_2","doi-asserted-by":"publisher","DOI":"10.1787\/87a0c171-en"},{"key":"e_1_3_8_7_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2026.14909"},{"key":"e_1_3_8_8_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamahealthforum.2022.1809"},{"key":"e_1_3_8_9_2","doi-asserted-by":"publisher","DOI":"10.1093\/ofid\/ofaf533"},{"key":"e_1_3_8_10_2","doi-asserted-by":"publisher","DOI":"10.1038\/s43856-025-01300-z"},{"key":"e_1_3_8_11_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-024-03173-6"},{"key":"e_1_3_8_12_2","doi-asserted-by":"publisher","DOI":"10.1057\/s41285-025-00232-x"},{"key":"e_1_3_8_13_2","volume-title":"Engineering, and Medicine. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection","author":"National Academies of Sciences","year":"2024","unstructured":"National Academies of Sciences. Engineering, and Medicine. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press; 2024."},{"key":"e_1_3_8_14_2","volume-title":"The illness narratives: Suffering, healing, and the human condition","author":"Kleinman A","year":"1988","unstructured":"Kleinman A. The illness narratives: Suffering, healing, and the human condition. New York: Basic Books; 1988."},{"key":"e_1_3_8_15_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70266"},{"key":"e_1_3_8_16_2","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph22111620"},{"key":"e_1_3_8_17_2","doi-asserted-by":"publisher","DOI":"10.2307\/3178066"},{"key":"e_1_3_8_18_2","doi-asserted-by":"publisher","DOI":"10.1177\/00380385251351252"},{"key":"e_1_3_8_19_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.320.7227.114"},{"key":"e_1_3_8_20_2","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0000000000000388"},{"key":"e_1_3_8_21_2","doi-asserted-by":"publisher","DOI":"10.1126\/science.847460"},{"key":"e_1_3_8_22_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(55)91061-8"},{"key":"e_1_3_8_23_2","doi-asserted-by":"publisher","DOI":"10.3389\/fmed.2026.1798119"},{"key":"e_1_3_8_24_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.puhip.2024.100493"},{"key":"e_1_3_8_25_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2021-057169"},{"key":"e_1_3_8_26_2","doi-asserted-by":"publisher","DOI":"10.1016\/S2666-5247(24)00055-7"},{"key":"e_1_3_8_27_2","doi-asserted-by":"publisher","DOI":"10.3390\/v14092000"},{"key":"e_1_3_8_28_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00259-021-05215-4"},{"key":"e_1_3_8_29_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13550-025-01217-7"},{"key":"e_1_3_8_30_2","doi-asserted-by":"publisher","DOI":"10.1093\/braincomms\/fcaf337"},{"key":"e_1_3_8_31_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ebiom.2026.106339"},{"key":"e_1_3_8_32_2","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.77.6.1121"},{"key":"e_1_3_8_33_2","first-page":"1","volume-title":"Agnotology: The Making and Unmaking of Ignorance","author":"Proctor RN","year":"2008","unstructured":"Proctor RN. Agnotology: A missing term to describe the cultural production of ignorance (and its study). In: Proctor RN, Schiebinger L, eds. Agnotology: The Making and Unmaking of Ignorance. Stanford, CA: Stanford University Press; 2008:1-36."},{"key":"e_1_3_8_34_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.puhe.2025.02.003"},{"key":"e_1_3_8_35_2","doi-asserted-by":"publisher","DOI":"10.1353\/book.1850"},{"key":"e_1_3_8_36_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ssmqr.2022.100167"},{"key":"e_1_3_8_37_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1527-2001.2011.01177.x"},{"key":"e_1_3_8_38_2","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780198237907.001.0001"},{"key":"e_1_3_8_39_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.14037"},{"key":"e_1_3_8_40_2","doi-asserted-by":"publisher","DOI":"10.1215\/9780822384151"},{"key":"e_1_3_8_41_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2024.12747"},{"key":"e_1_3_8_42_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00259-021-05528-4"},{"key":"e_1_3_8_43_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2024.116770"},{"key":"e_1_3_8_44_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2024.05.023"},{"key":"e_1_3_8_45_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2024.55430"},{"key":"e_1_3_8_46_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41467-025-62965-7"},{"key":"e_1_3_8_47_2","doi-asserted-by":"publisher","DOI":"10.3390\/socsci13040181"},{"key":"e_1_3_8_48_2","doi-asserted-by":"publisher","DOI":"10.7554\/eLife.56344"},{"key":"e_1_3_8_49_2","doi-asserted-by":"publisher","DOI":"10.21203\/rs.3.rs-1285284\/v1"},{"key":"e_1_3_8_50_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-023-09601-6"},{"key":"e_1_3_8_51_2","doi-asserted-by":"publisher","DOI":"10.1093\/infdis\/jiaf030"},{"key":"e_1_3_8_52_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-024-11440-y"},{"key":"e_1_3_8_53_2","doi-asserted-by":"publisher","DOI":"10.1037\/bul0000473"},{"key":"e_1_3_8_54_2","unstructured":"Bischoff N Egloff N grosse Holtforth M et al. Lignes directrices M\u00e9decine Psychosomatique. 2018. Available at. https:\/\/www.sappm.ch\/wp-content\/uploads\/2024\/08\/Lignes-directrices-ASMPP-SSED.pdf. Accessed 28 June 2025."},{"key":"e_1_3_8_55_2","volume-title":"Post-COVID Expertisecentra","author":"Nederlandse Federatie van Universitair Medische Centra (NFU)","year":"2024","unstructured":"Nederlandse Federatie van Universitair Medische Centra (NFU). Post-COVID Expertisecentra; 2024. Available at. https:\/\/www.nfu.nl\/themas\/zorg-op-de-juiste-plek\/post-covid-expertisecentra. Accessed 28 June 2025."},{"key":"e_1_3_8_56_2","volume-title":"Network of Expertise on Long COVID. European Commission \u2013 Public Health","author":"European Commission","year":"2025","unstructured":"European Commission. Network of Expertise on Long COVID. European Commission \u2013 Public Health; 2025. Available at. https:\/\/health.ec.europa.eu\/non-communicable-diseases\/expert-group-public-health\/network-expertise-long-covid_en. Accessed 1 October 2025."},{"key":"e_1_3_8_57_2","doi-asserted-by":"publisher","DOI":"10.1258\/jhsrp.2012.012002"},{"key":"e_1_3_8_58_2","doi-asserted-by":"publisher","DOI":"10.1590\/0102-311X00149912"},{"key":"e_1_3_8_59_2","unstructured":"Beersmans A Euben T Gils M Im Associates. Rapport: analyse tijdsbesteding huisartsen. 2023. Available at. https:\/\/www.health.belgium.be\/sites\/default\/files\/uploads\/fields\/fpshealth_theme_file\/20230417_nl_im_associates_-_rapport_tijdsindeling_huisartsen.pdf. Accessed 1 October 2025."},{"key":"e_1_3_8_60_2","doi-asserted-by":"publisher","DOI":"10.1183\/20734735.0010-2022"},{"key":"e_1_3_8_61_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.0040286"},{"issue":"12","key":"e_1_3_8_62_2","first-page":"906","article-title":"The Pharmaceutical Industry's Role in Defining Illness","volume":"13","author":"Kitsis EA","year":"2011","unstructured":"Kitsis EA. The Pharmaceutical Industry's Role in Defining Illness. The Virtual Mentor. 2011;13(12):906-911.","journal-title":"The Virtual Mentor"},{"key":"e_1_3_8_63_2","volume-title":"The Gift: Forms and Functions of Exchange in Archaic Societies","author":"Mauss M","year":"1954","unstructured":"Mauss M. The Gift: Forms and Functions of Exchange in Archaic Societies. Translated by I. Cunnison, with an introduction by E.E. Evans-Pritchard. London: Cohen & West. 1954."},{"key":"e_1_3_8_64_2","doi-asserted-by":"publisher","DOI":"10.1080\/17441692.2014.881519"},{"key":"e_1_3_8_65_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.focus.2025.100458"},{"key":"e_1_3_8_66_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2020.113426"},{"key":"e_1_3_8_67_2","doi-asserted-by":"publisher","DOI":"10.1086\/421123"},{"key":"e_1_3_8_68_2","doi-asserted-by":"publisher","DOI":"10.1515\/9789048513017"},{"key":"e_1_3_8_69_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-024-09062-5"},{"key":"e_1_3_8_70_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2023-075756"},{"key":"e_1_3_8_71_2","first-page":"193","volume-title":"Les informag-iciens","author":"Jamoulle M","year":"1986","unstructured":"Jamoulle M. Information et informatisation en m\u00e9decine g\u00e9n\u00e9rale. In: Van Bastelaer P, Berleur J, eds. Les informag-iciens. Namur: Presses universitaires de Namur; 1986:193-209."},{"key":"e_1_3_8_72_2","doi-asserted-by":"publisher","DOI":"10.15171\/ijhpm.2015.24"},{"key":"e_1_3_8_73_2","doi-asserted-by":"publisher","DOI":"10.1155\/hsc\/8893161"},{"key":"e_1_3_8_74_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.lanepe.2021.100242"},{"issue":"12","key":"e_1_3_8_75_2","first-page":"1033","article-title":"The importance of being different: Inaugural Dr Ian McWhinney Lecture","volume":"61","author":"Kidd M","year":"2015","unstructured":"Kidd M. The importance of being different: Inaugural Dr Ian McWhinney Lecture. Canadian Family Physician. 2015;61(12):1033-1038.","journal-title":"Canadian Family Physician"},{"key":"e_1_3_8_76_2","volume-title":"La d\u00e9finition europ\u00e9enne de la m\u00e9decine g\u00e9n\u00e9rale","author":"WONCA Europe","year":"2002","unstructured":"WONCA Europe. La d\u00e9finition europ\u00e9enne de la m\u00e9decine g\u00e9n\u00e9rale; 2002. Available at. https:\/\/www.woncaeurope.org\/page\/definition-of-general-practice-family-medicine. Accessed 28 June 2025."},{"key":"e_1_3_8_77_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-023-02019-3"},{"key":"e_1_3_8_78_2","volume-title":"Original title: Mouse or Rat ? Translation as Negotiation","author":"Eco U","year":"2003","unstructured":"Eco U. Dire presque la m\u00eame chose: Exp\u00e9riences de traduction. In: Original title: Mouse or Rat ? Translation as Negotiation. Paris: Grasset; 2003."},{"key":"e_1_3_8_79_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.m3026"},{"key":"e_1_3_8_80_2","doi-asserted-by":"publisher","DOI":"10.3399\/bjgp16X687625"},{"key":"e_1_3_8_81_2","doi-asserted-by":"publisher","DOI":"10.4324\/9780203927076"},{"key":"e_1_3_8_82_2","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awaf091"},{"key":"e_1_3_8_83_2","volume-title":"Myalgic encephalomyelitis (or encephalopathy)\/chronic fatigue syndrome: diagnosis and management. (NICE) guideline NG206","author":"National Institute for Health and Care Excellence","year":"2021","unstructured":"National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)\/chronic fatigue syndrome: diagnosis and management. (NICE) guideline NG206; 2021. Available at. https:\/\/www.nice.org.uk\/guidance\/ng206. Accessed 1 October 2025."},{"key":"e_1_3_8_84_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2021.114326"},{"key":"e_1_3_8_85_2","volume-title":"The Structure of Scientific Revolutions","author":"Kuhn TS","year":"1962","unstructured":"Kuhn TS. The Structure of Scientific Revolutions. Chicago, IL: University of Chicago Press; 1962."},{"key":"e_1_3_8_86_2","doi-asserted-by":"publisher","DOI":"10.2307\/3349705"},{"key":"e_1_3_8_87_2","volume-title":"The gold standard: The challenge of evidence based-medicine and standardization in health care","author":"Timmermans S","year":"2003","unstructured":"Timmermans S, Berg M. The gold standard: The challenge of evidence based-medicine and standardization in health care. Philadelphia, PA: Temple University Press; 2003."},{"key":"e_1_3_8_88_2","volume-title":"La Formation de l\u2019Esprit Scientifique: Contribution \u00e0 une psychanalyse de la connaissance objective","author":"Bachelard G","year":"1938","unstructured":"Bachelard G. La Formation de l\u2019Esprit Scientifique: Contribution \u00e0 une psychanalyse de la connaissance objective. Paris: Vrin; 1938."},{"key":"e_1_3_8_89_2","doi-asserted-by":"publisher","DOI":"10.1097\/00001888-200205000-00003"},{"key":"e_1_3_8_90_2","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0b013e3181c88449"},{"key":"e_1_3_8_91_2","volume-title":"Problem-based learning: An approach to medical education","author":"Barrows HS","year":"1980","unstructured":"Barrows HS, Tamblyn RM. Problem-based learning: An approach to medical education. 1st edn. New York: Springer Publishing Company; 1980.","edition":"1"},{"key":"e_1_3_8_92_2","doi-asserted-by":"publisher","DOI":"10.3109\/02699206.2013.820351"},{"key":"e_1_3_8_93_2","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2023.1202728"},{"issue":"3","key":"e_1_3_8_94_2","first-page":"73","article-title":"Immersion communautaire, un cursus exemplaire \u00e0 Lausanne","volume":"19","author":"Widmer D","year":"2019","unstructured":"Widmer D. Immersion communautaire, un cursus exemplaire \u00e0 Lausanne. Primary and hospital care \u2013 m\u00e9decine interne g\u00e9n\u00e9rale. 2019;19(3):73-76.","journal-title":"Primary and hospital care \u2013 m\u00e9decine interne g\u00e9n\u00e9rale"},{"key":"e_1_3_8_95_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13010-024-00160-0"},{"key":"e_1_3_8_96_2","doi-asserted-by":"publisher","DOI":"10.53738\/REVMED.2018.14.625.1943"},{"key":"e_1_3_8_97_2","doi-asserted-by":"publisher","DOI":"10.1080\/03085147800000013"},{"key":"e_1_3_8_98_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-015-0063-3"},{"key":"e_1_3_8_99_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.0030294"}],"container-title":["Journal of Primary Care &amp; Community Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/21501319261495377","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/21501319261495377","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/21501319261495377","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,24]],"date-time":"2026-10-24T08:48:55Z","timestamp":1792831735000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/21501319261495377"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10]]},"references-count":98,"alternative-id":["10.1177\/21501319261495377"],"URL":"https:\/\/doi.org\/10.1177\/21501319261495377","relation":{},"ISSN":["2150-1319","2150-1327"],"issn-type":[{"value":"2150-1319","type":"print"},{"value":"2150-1327","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10]]},"article-number":"21501319261495377"}}