Estimert insidens av kronisk utmattelsessyndrom/myalgisk encefalopati i Norge mellom 2016-2018 : en registerstudie

Geir Haakon Hilland; Kjartan Sarheim Anthun

doi:10.7557/14.6535

Forfattere

Geir Haakon Hilland Sintef Helse, avdeling for helsetjenesteforskning
Kjartan Sarheim Anthun Sintef Helse, avdeling for helsetjenesteforskning https://orcid.org/0000-0002-2142-2742

DOI:

https://doi.org/10.7557/14.6535

Emneord (Nøkkelord):

Myalgisk encefalopati/kronisk utmattelsessyndrom, registerdata, insidensrate, forekomst, diagnostisering, ME/CFS, ME, CFS

Sammendrag

Kronisk utmattelsessyndrom/myalgisk encefalopati (ME/CFS) er en kompleks og kronisk sykdom som er assosiert med en betydelig reduksjon i livskvalitet for de rammede. I denne studien estimerer vi insidensraten for ME/CFS i den norske befolkningen mellom 2016 og 2018. Data om pasienter er innsamlet fra Norsk pasientregister (NPR). Populasjonen er definert av alle pasienter behandlet i spesialisthelsetjenesten som har blitt diagnostisert med ME/CFS mellom 2016-2018. Vi finner at 5 556 nye pasienter ble diagnostisert med ME/CFS i perioden 2016-2018. Insidensraten var på 36.1 per 100 000 person-år. Av disse var 4 347 kvinner, som betyr at insidensraten for kvinner relativt til menn var 3.7. Vi finner at forekomsten av ME/CFS varierer med alder, og vi finner to alderstopper i gruppene 15-19 og 35-39 år. Vi finner høyere insidens for den samlede populasjonen, sammenlignet med tidligere norsk forskning.

Statistikk

Laster statistikk…

Forfatterbiografier

Geir Haakon Hilland, Sintef Helse, avdeling for helsetjenesteforskning

Forsker hos Sintef Digital, avdeling for Helsetjenesteforskning

Kjartan Sarheim Anthun, Sintef Helse, avdeling for helsetjenesteforskning

Seniorforsker hos Sintef Digital, avdeling for Helsetjenesteforskning

Referanser

Attree EA, Arroll MA, Dancey CP, Griffith C, Bansal AS. Psychosocial factors involved in memory and cognitive failures in people with myalgic encephalomyelitis/chronic fatigue syndrome. Psychol Res Behav Manag. 2014 Feb 25; 7:67-76. https://doi.org/10.2147/PRBM.S50645

Bakken, I.J., Tveito, K., Gunnes, N., Ghaderi, S., Stoltenberg, C., Trogstad, L., H Åberg, S.E., Magnus, P., 2014. "Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012". BMC Medicine: 12. https://doi.org/10.1186/s12916-014-0167-5

Baraniuk, J.N., 2017. Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study. Fatigue: Biomedicine, Health & Behavior 5, 215–230. https://doi:10.1080/21641846.2017.1353578

Bested, Alison C. and Marshall, Lynn M. "Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians" Reviews on Environmental Health, vol. 30, no. 4, 2015, pp. 223-249. https://doi.org/10.1515/reveh-2015-0026

Brittain, E., et al. (2021). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members." Medicina 57(1): 43. https://doi.org/10.3390/medicina57010043

Brurberg, K.G., Fønhus, M.S., Larun, L., Flottorp, S., Malterud, K., 2014. Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS): a systematic review. BMJ Open 4, e003973. https://doi.org/10.1136/bmjopen-2013-003973

Castro-Marrero, J., et al. (2019). "Unemployment and work disability in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: a community-based cross-sectional study from Spain." BMC Public Health 19(1): 840. https://doi.org/10.1186/s12889-019-7225-z

Carruthers, B.M., Van De Sande, M.I., De Meirleir, K.L., Klimas, N.G., Broderick, G., Mitchell, T., Staines, D., Powles, A.C.P., Speight, N., Vallings, R., Bateman, L., Baumgarten‐Austrheim, B., Bell, D.S., Carlo‐Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A.R., Marshall‐Gradisbik, S., Mena, I., Mikovits, J.A., Miwa, K., Murovska, M., Pall, M.L., Stevens, S., 2011. Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine 270, 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x

Cortes Rivera, M., Mastronardi, C., Silva-Aldana, C., Arcos-Burgos, M., Lidbury, B., 2019. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review. Diagnostics 9, 91. https://doi:10.3390/diagnostics9030091

Coxe, S., West, S.G., Aiken, L.S., 2009. The Analysis of Count Data: A Gentle Introduction to Poisson Regression and Its Alternatives. Journal of Personality Assessment 91, 121-136. https://doi.org:10.1080/00223890802634175.

De Carvalho Leite, J. C., et al. (2011). "Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis." International Journal for Equity in Health 10(1): 46. https://doi.org/10.1186/1475-9276-10-46

Deumer, U.-S., et al. (2021). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview." Journal of Clinical Medicine 10(20): 4786. https://doi.org/10.3390/jcm10204786

Esfandyarpour, R., Kashi, A., Nemat-Gorgani, M., Wilhelmy, J., Davis, R.W., 2019. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proceedings of the National Academy of Sciences 116, 10250–10257. https://doi:10.1073/pnas.1901274116

Fluge, Ø. R., et al. (2019) "B-lymphocyte depletion in patients with myalgic encephalomyelitis/chronic fatigue syndrome: A randomized, double-blind, placebo-controlled trial." Annals of Internal Medicine: 583-593. https://doi.org/10.7326/M18-1451

Fluge, Ø. R, Tronstad, K.J., Mella, O., 2021. Pathomechanisms and possible interventions in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Journal of Clinical Investigation 131. https://doi.org/10.1172/jci150377

Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Annals of internal medicine. 1994 Dec. https://doi.org/10.7326/0003-4819-121-12-199412150-00009.

Haney E, Smith ME, McDonagh M, et al. Diagnostic methods for myalgic encephalomyelitis/Chronic Fatigue Syndrome: A systematic review for a National Institutes of Health Pathways to Prevention workshop. Ann Intern Med 2015;162(12):834–840.

Helsedirektoratet. (2014). "Nasjonal veileder: Pasienter med ME/CFS: Utredning, diagnostikk, behandling, rehabilitering, pleie og omsorg. Til fastleger, helse- og omsorgstjenestene i kommunene og til spesialisthelsetjenesten (IS:1944). Andvord Grafisk AS.: https://www.helsedirektoratet.no/veiledere/pasienter-med-cfsme-utredning-diagnostikk-behandling-rehabilitering-pleie-og-omsorg/

Jason, L. A., et al. (2008). "The Economic impact of ME/CFS: Individual and societal costs." Dynamic Medicine 7(1): 6. https://doi.org/10.1186/1476-5918-7-6

Jason, L.A.,., Brown, A., Evans, M., Jantke, R., Williams,Y., Furst, J., Vernon, S.D., (2015). Chronic fatigue syndrome and myalgic encephalomyelitis: towards an empirical case definition. Health Psychology and Behavioral Medicine 3, 82–93. https://doi:10.1080/21642850.2015.1014489

Larun L, Brurberg KG Kot, B., Sunnquist, M, Fønhus MS, Kirkehei I. Behandling av kroniskutmattelsessyndrom ME/CFS. Rapid Review from Kunnskapssenteret− 2011. Oslo: Norwegian Knowledge Centre for the Health Services. https://www.fhi.no/globalassets/dokumenterfiler/notater/2011/notat_2011me_behandling.pdf

López, F., et al. (2020). "Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology." Journal of Clinical Medicine 9(5): 1557. https://doi.org/10.3390/jcm9051557

Lim, E.-J., et al. (2020). "Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)." Journal of Translational Medicine 18(1). https://doi.org/10.1186/s12967-020-02269-0

Lowry, T. J. and K. I. Pakenham (2008). "Health-related quality of life in chronic fatigue syndrome: Predictors of physical functioning and psychological distress." Psychology, Health & Medicine 13(2): 222-238. https://doi.org/10.1080/13548500701335698

Lippestad, J., Kurtze, N & Bjerkan, A.M (2011). Status for helse- og omsorgstilbudet til pasienter med ME/CFS i Norge. SINTEF Teknologi og Samfunn, Rapport 60H1803: https://www.sintef.no/globalassets/upload/teknologi_samfunn/me-rapport.pdf

Maes, M.; Twisk, F.N.M.; Johnson, C. Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS),and Chronic Fatigue (CF) are distinguished accurately: Results of supervised learning techniques applied onclinical and inflammatory data. Psychiatry Res.2012,200, 754–760. https://doi.org/10.1016/j.psychres.2012.03.031

Mateo LJ, Chu L, Stevens S, Stevens J, Snell CR, Davenport T, VanNess JM. Post-exertional symptoms distinguish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome subjects from healthy controls. Work. 2020;66(2):265-275. https://doi.org/10.3233/WOR-203168. PMID: 32568143

Missen, A., Hollingworth, W., Eaton, N. and Crawley, E. (2012), The financial and psychological impacts on mothers of children with chronic fatigue syndrome (ME/CFS). Child: Care, Health and Development, 38: 505-512. https://doi.org/10.1111/j.1365-2214.2011.01298.x

Missailidis, D., et al. (2020). "Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." International Journal of Molecular Sciences 21(3): 1142. https://doi.org/10.3390/ijms21031142

Nacul, L. C., et al. (2011). "The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers." BMC Public Health 11(1): 402. https://doi.org/10.1186/1471-2458-11-402

Nacul, L.; Lacerda, E.M.; Kingdon, C.C.; Curran, H.; Bowman, E.W (2017). How have selection bias and diseasemisclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?J.Health Psychol.2017, 135910531769580. https://doi.org/10.1177/1359105317695803

Omland et.al (2015). Frem ganger så mange ME-diagnoser som i 2008. NRK.no. Hentet 02.05.2022 fra: https://www.nrk.no/norge/fem-ganger-sa-mange-me-diagnoser-som-i-2008-1.12422139

O'Boyle, S., et al. (2022). "A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." Frontiers in Medicine 8. https://doi.org/10.3389/fmed.2021.688159