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Research Article

Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 1155-1177 | Received 26 Nov 2021, Accepted 15 Feb 2022, Published online: 11 Apr 2022

References

  • Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., Cudia, J., Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education and Counseling, 86(2), 147–155. https://doi.org/10.1016/j.pec.2011.04.016
  • Åsbring, P., & Närvänen, A.-L. (2003). Ideal versus reality: Physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social Science & Medicine (1982), 57(4), 711–720. https://doi.org/10.1016/S0277-9536(02)00420-3
  • Bülow, P. (2008). You have to ask a little”: Troublesome storytelling about contested illness. In L.-C. Hydén & J. Brockmeier (Eds.), Health, illness and culture. Broken narratives (pp. 137–159). Routledge.
  • Carel, H. (2016). Phenomenology of illness. Oxford University Press.
  • Clayton, E. W. (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: An IOM report on redefining an illness. JAMA, 313(11), 1101–1102. https://doi.org/10.1001/jama.2015.1346
  • Covan, E. K. (2022). Chronic illness: Misunderstood, misdiagnosed, and mistreated among women. Health Care for Women International, 43(1-3), 1–4. https://doi.org/10.1080/07399332.2022.2028470
  • de Beauvoir, S. (2000). Det annet kjønn. Pax forlag.
  • Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology & Health, 22(7), 851–867. https://doi.org/10.1080/14768320600976224
  • Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine (1982), 62(3), 577–590. https://doi.org/10.1016/j.socscimed.2005.06.018
  • Fisher, H., & Crawley, E. (2013). Why do young people with CFS/ME feel anxious? A qualitative study. Clinical Child Psychology and Psychiatry, 18(4), 556–573. https://doi.org/10.1177/1359104512460862
  • Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121(12), 953–959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
  • Gimeno Torrent, X. (2022). The circuit of symbolic violence in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) (I): A preliminary study. Health Care for Women International, 43 (1-3), 5-41. https://doi.org/10.1080/07399332.2021.1925900.
  • Groven, K. S., & Dahl-Michelsen, T. (2022). Recovering from chronic fatigue syndrome as an intra-active process. Health Care for Women International, 43, 1–3, 42–53. https://doi.org/10.1080/07399332.2019.1663195
  • Heidegger, M. (1953/2010). Being and time. (J. Stambaugh, Trans.). N.Y. State University of New York Press, Albany.
  • Hydén, L.-C., & Sachs, L. (1998). Suffering, hope and diagnosis: On the negotiation of chronic fatigue syndrome. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 2(2), 175–193. https://doi.org/10.1177/136345939800200204
  • Jason, L. A., Katz, B. Z., Sunnquist, M., Torres, C., Cotler, J., & Bhatia, S. (2020). The prevalence of pediatric myalgic encephalomyelitis/chronic fatigue syndrome in a community‑based sample. Child & Youth Care Forum, 49(4), 563–579. https://doi.org/10.1007/s10566-019-09543-3
  • Jelbert, R., Stedmon, J., & Stephens, A. (2010). A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome. Clinical Child Psychology and Psychiatry, 15(2), 267–283. https://doi.org/10.1177/1359104509340940
  • Katz, B. Z., Shiraishi, Y., Mears, C. J., Binns, H. J., & Taylor, R. (2009). Chronic fatigue syndrome after infectious mononucleosis in adolescents. Journal of Pediatrics, 124(1), 189–193. https://doi.org/10.1542/peds.2008-1879
  • Knight, S., Harvey, A., Lubitz, L., Rowe, K., Reveley, C., Veit, F., Hennel, S., & Scheinberg, A. (2013). Paediatric chronic fatigue syndrome: Complex presentations and protracted time to diagnosis. Journal of Paediatrics and Child Health, 49(11), 919–924. https://doi.org/10.1111/jpc.12425
  • Leder, D. (1990). The absent body. University of Chicago Press.
  • Lievesley, K., Rimes, K. A., & Chalder, T. (2014). A review of the predisposing, precipitating and perpetuating factors in Chronic Fatigue Syndrome in children and adolescents. Clinical Psychology Review, 34(3), 233–248. https://doi.org/10.1016/j.cpr.2014.02.002
  • Lim, E. J., Ahn, Y. C., Jang, E. S., Lee, S. W., Lee, S. H., & Son, C. G. (2020). Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Translational Medicine, 18(1), 100. https://doi.org/10.1186/s12967-020-02269-0 [PMC][32093722
  • Loades, M. E., Crawley, E., Chalder, T., & Flannery, H. (2021). Paediatric chronic fatigue syndrome: 25 year perspective. Clinical Child Psychology and Psychiatry, 26(1), 8–17. https://doi.org/10.1177/1359104520978461
  • Mattingly, C. (1998). Healing dramas and clinical plots: The narrative structure of experience (Vol. 7). Cambridge University Press.
  • Mattingly, C., & Garro, L. C. (1994). Narrative representations of illness and healing. Social Science & Medicine (1982), 38(6), 771–774.
  • McManimen, S., McClellan, D., Stoothoff, J., Gleason, K., & Jason, L. A. (2019). Dismissing chronic illness: A qualitative analysis of negative health care experiences. Health Care for Women International, 40(3), 241–258. https://doi.org/10.1080/07399332.2018.1521811
  • Merleau-Ponty, M. (1962). The phenomenology of perception. Routledge.
  • Nettleton, S. (2006). ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine (1982), 62(5), 1167–1178. https://doi.org/10.1016/j.socscimed.2005.07.030
  • Nijhof, S. L., Maijer, K., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2011). Adolescent chronic fatigue syndrome: Prevalence, incidence, and morbidity. Pediatrics, 127(5), e1169–e1175. https://doi.org/10.1542/peds.2010-1147
  • Njølstad, B. W., Mengshoel, A. M., & Sveen, U. (2019). It’s like being a slave to your own body in a way’: A qualitative study of adolescents with chronic fatigue syndrome. Scandinavian Journal of Occupational Therapy, 26(7), 505–514. https://doi.org/10.1080/11038128.2018.1455895
  • Parslow, R. M., Anderson, N., Byrne, D., Shaw, A., Haywood, K. L., & Crawley, E. (2018). Adolescent’s descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): Interviews with adolescents and parents. Journal of BMJ Paediatrics Open, 2(1), e000281. https://doi.org/10.1136/bmjpo-2018-000281
  • Parslow, R. M., Harris, S., Broughton, J., Alattas, A., Crawley, E., Haywood, K., & Shaw, A. (2017). Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies. BMJ Open, 7(1), e012633. https://doi.org/10.1136/bmjopen-2016-012633 [PMC] [28087544
  • Parslow, R., Patel, A., Beasant, L., Haywood, K., Johnson, D., & Crawley, E. (2015). What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM. Archives of Disease in Childhood, 100(12), 1141–1147. https://doi.org/10.1136/archdischild-2015-308831
  • Polkinghorne, D. E. (1988). Narrative knowing and the human sciences. Suny Press.
  • Ranjith, G. (2005). Epidemiology of chronic fatigue syndrome. Occupational Medicine (Oxford, England), 55(1), 13–19. https://doi.org/10.1093/occmed/kqi012
  • Riessman, C. K. (2008). Narrative methods for the human sciences.
  • Rimes, K. A., Goodman, R., Hotopf, M., Wessely, S., Meltzer, H., & Chalder, T. (2007). Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: A prospective community study. Pediatrics, 119(3), e603–e609. https://doi.org/10.1542/peds.2006-2231
  • Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Schwartz, M. S., Speight, N., Stewart, J. M., Vallings, R., & Rowe, K. S. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: A primer. Frontiers in Pediatrics, 5, 121. https://doi.org/10.3389/fped.2017.0012[PMC] [28674681
  • Sharpe, M., & Greco, M. (2019). Chronic fatigue syndrome and an illness-focused approach to care: Controversy, morality and paradox. Medical Humanities, 45(2), 183–011598. https://doi.org/10.1136/medhum-2018-011598
  • Slatman, J. (2014). Multiple dimensions of embodiment in medical practices. Medicine, Health Care and Philosophy, 17(4), 549–557. https://doi.org/10.1007/s11019-014-9544-2
  • Strand, E. B., Nacul, L., Mengshoel, A. M., Helland, I. B., Grabowski, P., Krumina, A., Alegre-Martin, J., Efrim-Budisteanu, M., Sekulic, S., Pheby, D., Sakkas, G. K., Sirbu, C. A., Authier, F. J., & On behalf of the European Network on, M. C. (2019). Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union. PLOS One, 14(12), e0225995. https://doi.org/10.1371/journal.pone.0225995
  • Strassheim, V., Newton, J. L., & Collins, T. (2021). Experiences of living with severe chronic fatigue syndrome/myalgic encephalomyelitis. Healthcare, 9(2), 168. https://doi.org/10.3390/healthcare9020168
  • Svenaeus, F. (2000). The body uncanny—Further steps towards a phenomenology of illness. Medicine, Health Care, and Philosophy, 3(2), 125–137. https://doi.org/10.1023/A:1009920011164
  • Svenaeus, F. (2001a). The hermeneutics of medicine and the phenomenology of health: Steps towards a philosophy of medical practice (2nd revised ed.). Kluwer Academic Publishers.
  • Svenaeus, F. (2001b). The phenomenology of health and illness. In Handbook of phenomenology and medicine (pp. 87–108). Springer.
  • Svenaeus, F. (2009). The phenomenology of falling ill: An explication, critique and improvement of Sartre’s theory of embodiment and alienation. Human Studies, 32(1), 53–66. https://doi.org/10.1007/s10746-009-9109-1
  • Svenaeus, F. (2011). Illness as unhomelike being-in-the-world: Heidegger and the phenomenology of medicine. Medicine, Health Care and Philosophy, 14(3), 333–343. https://doi.org/10.1007/s11019-010-9301-0
  • Taylor, A. K., Loades, M., Brigden, A. L., Collin, S. M., & Crawley, E. (2017). ‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME. Clinical Child Psychology and Psychiatry, 22(2), 326–340. https://doi.org/10.1177/1359104516672507
  • Webb, C. M., Collin, S. M., Deave, T., Haig-Ferguson, A., Spatz, A., & Crawley, E. (2011). What stops children with a chronic illness accessing health care: A mixed methods study in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of BMC Health Services Research, 11(1), 308.
  • Williams-Wilson, M. (2009). I had to give up so, so much: A narrative study to investigate the impact of Chronic Fatigue Syndrome (CFS) on the lives of young people. Bournemouth University: UK.
  • Winger, A., Ekstedt, M., Wyller, V. B., & Helseth, S. (2014). ‘Sometimes it feels as if the world goes on without me’: Adolescents’ experiences of living with chronic fatigue syndrome. Journal of Clinical Nursing, 23(17–18), 2649–2657. https://doi.org/10.1111/jocn.12522