{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T05:20:58Z","timestamp":1772515258610,"version":"3.50.1"},"reference-count":35,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2024,1,27]],"date-time":"2024-01-27T00:00:00Z","timestamp":1706313600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Nursing Inquiry"],"published-print":{"date-parts":[[2024,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In this article, we present findings from a qualitative study examining how young women experience being long\u2010term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME\/CFS during childhood and adolescence look back on their lived experience of being long\u2010term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13\u00a0women, aged 16\u201329 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: <jats:italic>Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark<\/jats:italic>; and\u00a0<jats:italic>Recasting painful memories of being bedridden and alone<\/jats:italic>. Based on our findings, we argue that the experience of being long\u2010term bedridden with ME\/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.<\/jats:p>","DOI":"10.1111\/nin.12625","type":"journal-article","created":{"date-parts":[[2024,1,27]],"date-time":"2024-01-27T16:23:58Z","timestamp":1706372638000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["A suffering body, hidden away from others: The experience of being long\u2010term bedridden with severe myalgic encephalomyelitis\/chronic fatigue syndrome in childhood and adolescence"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6517-1044","authenticated-orcid":false,"given":"Silje Helen","family":"Krabbe","sequence":"first","affiliation":[{"name":"Department of Physiotherapy, Faculty of Health Sciences Oslo Metropolitan University Oslo Norway"},{"name":"Children's Surgical Department, Division of Head, Neck and Reconstructive Surgery Oslo University Hospital Oslo Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wenche Schr\u00f8der","family":"Bjorb\u00e6kmo","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy, Faculty of Health Sciences Oslo Metropolitan University Oslo Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne Marit","family":"Mengshoel","sequence":"additional","affiliation":[{"name":"Department for Interdisciplinary Health Sciences, Faculty of Medicine University of Oslo Oslo Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Unni","family":"Sveen","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy, Prosthetics and Orthotics, Faculty of Health Sciences Oslo Metropolitan University Oslo Norway"},{"name":"Department of Physical Medicine &amp; Rehabilitation Oslo University Hospital Oslo Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen Synne","family":"Groven","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy, Faculty of Health Sciences Oslo Metropolitan University Oslo Norway"},{"name":"Faculty of Health Studies VID Specialized University Sandes Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,1,27]]},"reference":[{"key":"e_1_2_11_2_1","volume-title":"Ungdata 2022: Nasjonale resultater (NOVA Rapport 5\/22) [Youth data 2022: National results]","author":"Bakken A.","year":"2022"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/17482631.2023.2223420"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare9040459"},{"key":"e_1_2_11_5_1","unstructured":"Brea J.(2017). Unrest [Film].Brea Jennifer."},{"key":"e_1_2_11_6_1","volume-title":"Beyond myalgic encephalomyelitis\/chronic fatigue syndrome: Redefining an illness","author":"Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis\/Chronic Fatigue, Syndrome, Board on the Health of Select\u00a0Populations, & Institute of\u00a0Medicine","year":"2015"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare9050504"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm9051557"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1364-6613(99)01417-5"},{"key":"e_1_2_11_10_1","unstructured":"Heidegger M.(1953\/2010).Being and time. (J Stambaugh trans). 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