{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T03:22:22Z","timestamp":1787714542418,"version":"build-2784847793"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T00:00:00Z","timestamp":1781481600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T00:00:00Z","timestamp":1787702400000},"content-version":"vor","delay-in-days":72,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"NTNU Norwegian University of Science and Technology"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Health Serv Res"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS) is a complex, disabling condition with limited evidence-based treatment options. Self-management support is recommended to improve people\u2019s coping and quality of life, yet little is known about whether the provided self-management support meet individuals with ME\/CFS and their next of kins needs. The aim of this study was to explore the self-management support needs of individuals with ME\/CFS and their next of kin, and to identify barriers and facilitators to effective self-management support in order to inform improvements to existing self-management interventions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted an exploratory descriptive qualitative study using a combination of semi-structured individual and focus group interviews with a total of 16 participants (12 individuals with ME\/CFS and four next of kin) in Norway. Data were analysed thematically within a constructivist framework.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We identified three main themes. Theme one was named \u201cIndividualised and accessible support\u201d, focusing on the importance of timing, readiness, and flexible delivery formats (digital, hybrid, modular). The second theme was named \u201cContinuity and validation\u201d, emphasising current gaps in follow-up care for individuals with ME\/CFS and experiences of stigma. The third main theme was named \u201cThe role of peer support and practical strategies\u201d, highlighting the value of peer interaction, sharing experiences, and adaptive tools (e.g., pacing, symptom tracking). Overall, the participants described that existing self\u2011management support was poorly aligned with their physical and cognitive limitations, lacked consistent and structured follow\u2011up, and often conveyed contradictory guidance on activity management.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Self-management support for individuals with ME\/CFS should be integrated into standardised care pathways, delivered in phased and modular formats, and include structured follow-up. Digital and hybrid solutions can enhance accessibility. Including peer-led components and family involvement may foster empowerment and reduce isolation. Training healthcare professionals in ME-sensitive communication and developing national guidelines are critical to improving service quality and reducing stigma.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12913-026-14962-9","type":"journal-article","created":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T09:35:14Z","timestamp":1781516114000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Self-management support needs for individuals with Myalgic Encephalomyelitis and their next of kin \u2013 a qualitative study"],"prefix":"10.1186","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4256-6339","authenticated-orcid":false,"given":"Kjersti","family":"Gr\u00f8nning","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liv Eli","family":"Lysfjord","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann Katrin Hagen","family":"R\u00f8stad","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,6,15]]},"reference":[{"issue":"12","key":"14962_CR1","doi-asserted-by":"publisher","first-page":"1056","DOI":"10.1136\/jnnp-2022-330463","volume":"94","author":"P White","year":"2023","unstructured":"White P, Abbey S, Angus B, Ball HA, Buchwald DS, Burness C, et al. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis. J Neurol Neurosurg Psychiatry. 2023;94(12):1056\u201363.","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"1","key":"14962_CR2","doi-asserted-by":"publisher","first-page":"100","DOI":"10.1186\/s12967-020-02269-0","volume":"18","author":"E-J Lim","year":"2020","unstructured":"Lim E-J, Ahn Y-C, Jang E-S, Lee S-W, Lee S-H, Son C-G. Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome\/myalgic encephalomyelitis (CFS\/ME). J translational Med. 2020;18(1):100.","journal-title":"J translational Med"},{"key":"14962_CR3","doi-asserted-by":"publisher","first-page":"412","DOI":"10.3389\/fped.2018.00412","volume":"6","author":"AR Valdez","year":"2019","unstructured":"Valdez AR, Hancock EE, Adebayo S, Kiernicki DJ, Proskauer D, Attewell JR, et al. Estimating prevalence, demographics, and costs of ME\/CFS using large scale medical claims data and machine learning. Front Pead. 2019;6:412.","journal-title":"Front Pead"},{"issue":"4","key":"14962_CR4","doi-asserted-by":"publisher","first-page":"1487","DOI":"10.3390\/jcm12041487","volume":"12","author":"K Sommerfelt","year":"2023","unstructured":"Sommerfelt K, Schei T, Angelsen A. Severe and Very Severe Myalgic Encephalopathy\/Chronic Fatigue Syndrome ME\/CFS in Norway: Symptom Burden and Access to Care. J Clin Med. 2023;12(4):1487.","journal-title":"J Clin Med"},{"key":"14962_CR5","doi-asserted-by":"crossref","unstructured":"Todhunter-Brown A, Campbell P, Broderick C, Cowie J, Davis B, Fenton C, et al. Recent research in Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome: an evidence map. 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The study received ethical approval from the Norwegian Regional Committees for Medical and Health Research Ethics (ref. 552188) and the Data Access Committee of the participating healthcare institution (ref. 2022\/4776\u201336989\/2022). All participants were provided with both verbal and written information outlining the study\u2019s purpose, emphasizing that their involvement was entirely voluntary. Written informed consent was obtained from all participants prior to the interviews. Once the recordings were transcribed and verified for accuracy, they were permanently deleted. To protect participant confidentiality, all personal identifiers were removed from the data, and no identifying information was linked to the transcripts.","order":1,"name":"Ethics","label":"Ethics approval and consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"1182"}}