Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome

References

• Album, D., & Westin, S. (2008). Do diseases have a prestige hierarchy? A survey among physicians and medical students. Social Science & Medicine, 66(1), 182–17. https://doi.org/10.1016/j.socscimed.2007.07.003
   PubMed Web of Science ®Google Scholar
• Arnaudo, E. (2017). Pain and dualism: Which dualism? Journal of Evaluation in Clinical Practice, 23(5), 1081–1086. https://doi.org/10.1111/jep.12804
   PubMed Web of Science ®Google Scholar
• Beecher, H. K. (1956). Relationship of significance of wound to pain experienced. Journal of the American Medical Association, 161(17), 1609–1613. https://doi.org/10.1001/jama.1956.02970170005002
   PubMed Web of Science ®Google Scholar
• Bested, A. C., & Marshall, L. M. (2015). Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An evidence-based approach to diagnosis and management by clinicians. Reviews on Environmental Health, 30(4), 223–249. https://doi.org/10.1515/reveh-2015-0026
   PubMed Web of Science ®Google Scholar
• Blease, C., Carel, H., & Geraghty, K. (2017). Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome. Journal of Medical Ethics, 43(8), 549–557. https://doi.org/10.1136/medethics-2016-103691
   PubMed Web of Science ®Google Scholar
• Brinkmann, S. (2015). InterViews : Learning the craft of qualitative research interviewing (3rd ed.). Sage.
   Google Scholar
• Brown, B., Huszar, K., & Chapman, R. (2017). ‘Betwixt and between’; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). Sociology of Health & Illness, 39(5), 696–710. https://doi.org/10.1111/1467-9566.12546
   PubMed Web of Science ®Google Scholar
• Bülow, P. H. (2004). Sharing experiences of contested illness by storytelling [Review]. Discourse and Society, 15(1), 33–53. https://doi.org/10.1177/0957926504038943
   Web of Science ®Google Scholar
• Bury, M. (1982). Chronic illness as biographical disruption [10.1111/1467-9566.Ep11339939]. Sociology of Health & Illness, 4(2), 167–182. https://doi.org/10.1111/1467-9566.ep11339939
   PubMedGoogle Scholar
• Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine, 55(1), 20–31. https://doi.org/10.1093/occmed/kqi013
   PubMed Web of Science ®Google Scholar
• Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C., 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., & Stevens, S. (2011). Myalgic encephalomyelitis: International consensus criteria. Journal of Internal Medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x
   PubMed Web of Science ®Google Scholar
• Cassell, E. J. (2004). The nature of suffering and the goals of medicine. (2nd ed.). Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195156164.001.0001
   Google Scholar
• Chang, C. J., Hung, L. Y., Kogelnik, A. M., Kaufman, D., Aiyar, R. S., Chu, A. M., Wilhelmy, J., Li, P., Tannenbaum, L., Xiao, W., & Davis, R. W. (2021). A comprehensive examination of severely Ill ME/CFS patients. Healthcare (Basel), 9(10), 1290. https://doi.org/10.3390/healthcare9101290
   PubMedGoogle Scholar
• Charon, R. (2008). Narrative medicine: Honoring the stories of illness. Oxford University Press.
   Google Scholar
• Charon, R. (2021). Knowing, seeing, and telling in medicine. Lancet (London, England), 398(10316), 2068–2070. https://doi.org/10.1016/s0140-6736(21)02656-8
   PubMed Web of Science ®Google Scholar
• Cheshire, A., Ridge, D., Clark, L. V., & White, P. D. (2020). Sick of the sick role: Narratives of what “Recovery” means to people with CFS/ME. Qualitative Health Research, 31(2), 298–308. https://doi.org/10.1177/1049732320969395
   PubMed Web of Science ®Google Scholar
• Cortes Rivera, M., Mastronardi, C., Silva-Aldana, C. T., Arcos-Burgos, M., & Lidbury, B. A. (2019). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A comprehensive review. Diagnostics (Basel), 9(3), 91. https://doi.org/10.3390/diagnostics9030091
   PubMedGoogle Scholar
• Creed, F., Guthrie, E., Fink, P., Henningsen, P., Rief, W., Sharpe, M., & White, P. (2010). Is there a better term than “Medically unexplained symptoms”? Journal of Psychosomatic Research, 68(1), 5–8. https://doi.org/10.1016/j.jpsychores.2009.09.004
   PubMed Web of Science ®Google Scholar
• Crowley-Matoka, M., Saha, S., Dobscha, S. K., & Burgess, D. J. (2009). Problems of quality and equity in pain management: Exploring the role of biomedical culture. Pain Medicine, 10(7), 1312–1324. https://doi.org/10.1111/j.1526-4637.2009.00716.x
   PubMed Web of Science ®Google Scholar
• Denzin, N. K., & Lincoln, Y. S. (2000). Handbook of qualitative research (2nd ed.). Sage.
   Google Scholar
• Devendorf, A. R., Brown, A. A., & Jason, L. A. (2018). Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework. Chronic Illness, 16(4), 307–321. https://doi.org/10.1177/1742395318815965
   PubMed Web of Science ®Google Scholar
• Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129–136. https://doi.org/10.1126/science.847460
   PubMed Web of Science ®Google Scholar
• Eriksen, T. E., & Risør, M. B. (2014). What is called symptom? Medicine, Health Care and Philosophy, 17(1), 89–102. https://doi.org/10.1007/s11019-013-9501-5
   PubMed Web of Science ®Google Scholar
• Fennell, P. A., Dorr, N., & George, S. S. (2021). Elements of suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The experience of loss, grief, stigma, and trauma in the severely and very severely affected. Healthcare (Basel), 9(5), 553. https://doi.org/10.3390/healthcare9050553
   PubMedGoogle Scholar
• Flyvbjerg, B. (2004). Five misunderstandings about case-study research. Sosiologisk Tidsskrift, 12(2), 117–142. https://doi.org/10.18261/ISSN1504-2928-2004-02-02
   Google Scholar
• Frank, A. W. (2010). Letting stories breathe : A socio-narratology. University of Chicago Press.
   Google Scholar
• Frank, A. W. (2012). Practicing dialogical narrative analysis. In J. A. Holstein & J. F. Gubrium (Eds.), Varieties of narrative analysis (pp. 33–52). SAGE Publications, Inc. https://doi.org/10.4135/9781506335117.n3
   Google Scholar
• Frank, A. W. (2013). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
   Google Scholar
• Froehlich, L., Hattesohl, D. B., Cotler, J., Jason, L. A., Scheibenbogen, C., & Behrends, U. (2021). Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome. Journal of Health Psychology, 27(10), 2291–2304. https://doi.org/10.1177/13591053211027631
   PubMed Web of Science ®Google Scholar
• Gotaas, M. E., Stiles, T. C., Bjørngaard, J. H., Borchgrevink, P. C., & Fors, E. A. (2021). Cognitive behavioral therapy improves physical function and fatigue in mild and moderate chronic fatigue syndrome: A consecutive randomized controlled trial of standard and short interventions. Frontiers in Psychiatry / Frontiers Research Foundation, 12, 580924. https://doi.org/10.3389/fpsyt.2021.580924
   PubMed Web of Science ®Google Scholar
• Greco, M. (2012). The classification and nomenclature of ‘medically unexplained symptoms’: Conflict, performativity and critique. Social Science & Medicine, 75(12), 2362–2369. https://doi.org/10.1016/j.socscimed.2012.09.010
   PubMed Web of Science ®Google Scholar
• Greenhalgh, T. (1999). Narrative based medicine: Narrative based medicine in an evidence based world. BMJ, 318(7179), 323–325. https://doi.org/10.1136/bmj.318.7179.323
   PubMed Web of Science ®Google Scholar
• Hatcher, S., & Arroll, B. (2008). Assessment and management of medically unexplained symptoms. BMJ, 336(7653), 1124–1128. https://doi.org/10.1136/bmj.39554.592014.BE
   PubMedGoogle Scholar
• Henningsen, P., Gündel, H., Kop, W. J., Löwe, B., Martin, A., Rief, W., Rosmalen, J. G. M., Schröder, A., van der Feltz-Cornelis, C., & Van den Bergh, O. (2018). PersistEnt physical symptoms as perceptual dysregulation: A neuropsychobehavioral model and its clinical implications. Psychosomatic Medicine, 80(5), 422–431. https://doi.org/10.1097/psy.0000000000000588
   PubMed Web of Science ®Google Scholar
• Hydén, L. C. (1997). Illness and narrative. Sociology of Health & Illness, 19(1), 48–69. https://doi.org/10.1111/j.1467-9566.1997.tb00015.x
   Web of Science ®Google Scholar
• Iacobucci, G. (2021). Lack of agreement forces NICE to pause publication of ME/CFS guideline. BMJ, 374, n2046. https://doi.org/10.1136/bmj.n2046
   PubMedGoogle Scholar
• Johansen, M. L., & Risor, M. B. (2017). What is the problem with medically unexplained symptoms for GPs? A meta-synthesis of qualitative studies. Patient Education & Counseling, 100(4), 647–654. https://doi.org/10.1016/j.pec.2016.11.015
   PubMed Web of Science ®Google Scholar
• Jutel, A. (2009). Sociology of diagnosis: A preliminary review. Sociology of Health & Illness, 31(2), 278–299. https://doi.org/10.1111/j.1467-9566.2008.01152.x
   PubMed Web of Science ®Google Scholar
• Jutel, A. (2010). Medically unexplained symptoms and the disease label. Social Theory & Health, 8(3), 229–245. https://doi.org/10.1057/sth.2009.21
   Web of Science ®Google Scholar
• Jutel, A., & Conrad, P. (2011). Putting a Name to it: Diagnosis in contemporary society. John Hopkins University Press.
   Google Scholar
• Karfakis, N. (2018). The biopolitics of CFS/ME. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 70, 20–28. https://doi.org/10.1016/j.shpsc.2018.05.009
   PubMed Web of Science ®Google Scholar
• Khanpour Ardestani, S., Karkhaneh, M., Stein, E., Punja, S., Junqueira, D. R., Kuzmyn, T., Pearson, M., Smith, L., Olson, K., & Vohra, S. (2021). Systematic review of mind-body interventions to treat myalgic encephalomyelitis/chronic fatigue syndrome. Medicina (Kaunas), 57(7), 652. https://doi.org/10.3390/medicina57070652
   PubMed Web of Science ®Google Scholar
• Kirkengen, A. L., Ekeland, T. J., Getz, L., Hetlevik, I., Schei, E., Ulvestad, E., & Vetlesen, A. J. (2016). Medicine’s perception of reality - a split picture: Critical reflections on apparent anomalies within the biomedical theory of science. Journal of Evaluation in Clinical Practice, 22(4), 496–501. https://doi.org/10.1111/jep.12369
   PubMed Web of Science ®Google Scholar
• Kirmayer, L. J., & Gómez-Carrillo, A. (2019). Agency, embodiment and enactment in psychosomatic theory and practice. Medical Humanities, 45(2), 169–182. https://doi.org/10.1136/medhum-2018-011618
   PubMed Web of Science ®Google Scholar
• Kirmayer, L. J., Groleau, D., Looper, K. J., & Dao, M. D. (2004). Explaining medically unexplained symptoms. The Canadian Journal of Psychiatry, 49(10), 663–672. https://doi.org/10.1177/070674370404901003
   PubMed Web of Science ®Google Scholar
• Kirmayer, L. J., & Sartorius, N. (2007). Cultural models and somatic syndromes. Psychosomatic Medicine, 69(9), 832–840. https://doi.org/10.1097/PSY.0b013e31815b002c
   PubMed Web of Science ®Google Scholar
• Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. Basic Books.
   Google Scholar
• Ko, C., Lucassen, P., van der Linden, B., Ballering, A., & Olde Hartman, T. (2022). Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – a systematic review. Journal of Psychosomatic Research, 154, 110715. https://doi.org/10.1016/j.jpsychores.2021.110715
   PubMed Web of Science ®Google Scholar
• Krabbe, S. H., Groven, K. S., Schrøder Bjorbækmo, W., Sveen, U., & Mengshoel, A. M. (2023). The fragile process of homecoming - young women in recovery from severe ME/CFS. International Journal of Qualitative Studies on Health and Well-Being, 18(1), 2146244. https://doi.org/10.1080/17482631.2022.2146244
   PubMed Web of Science ®Google Scholar
• Kube, T., Rozenkrantz, L., Rief, W., & Barsky, A. (2020). Understanding persistent physical symptoms: Conceptual integration of psychological expectation models and predictive processing accounts. Clinical Psychology Review, 76, 101829–101829. https://doi.org/10.1016/j.cpr.2020.101829
   PubMed Web of Science ®Google Scholar
• Lian, O. S., & Robson, C. (2017). “It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters. International Journal of Qualitative Studies on Health and Well-Being, 12(1), 1392219. https://doi.org/10.1080/17482631.2017.1392219
   PubMed Web of Science ®Google Scholar
• Lim, E. J., & Son, C. G. (2020). Review of case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Journal of Translational Medicine, 18(1), 289. https://doi.org/10.1186/s12967-020-02455-0
   PubMed Web of Science ®Google Scholar
• Lipsitt, D. R., Joseph, R., Meyer, D., & Notman, M. T. (2015). Medically unexplained symptoms: Barriers to effective treatment when nothing is the matter. Harvard Review of Psychiatry, 23(6), 438–448. https://doi.org/10.1097/hrp.0000000000000055
   PubMed Web of Science ®Google Scholar
• Maldonado-Castellanos, I., & Barrios, L. M. (2023). Ethical issues when using digital platforms to perform interviews in qualitative health research. International Journal of Qualitative Methods, 22, 16094069231165949. https://doi.org/10.1177/16094069231165949
   Web of Science ®Google Scholar
• Malterud, K., & Aamland, A. (2019). Medically unexplained symptoms: Are we making progress? British Journal of General Practice, 69(681), 164–165. https://doi.org/10.3399/bjgp19X701885
   PubMed Web of Science ®Google Scholar
• Malterud, K., Guassora, A. D., Graungaard, A. H., & Reventlow, S. (2015). Understanding medical symptoms: A conceptual review and analysis. Theoretical Medicine and Bioethics, 36(6), 411–424. https://doi.org/10.1007/s11017-015-9347-3
   PubMed Web of Science ®Google Scholar
• Mattingly, C., & Lawlor, M. (2001). The fragility of healing. Ethos, 29(1), 30–57. https://doi.org/10.1525/eth.2001.29.1.30
   Web of Science ®Google Scholar
• Mishler, E. G. (1991). Research interviewing: Context and narrative. Harvard University Press. https://doi.org/10.2307/j.ctv26070x9
   Google Scholar
• Montoya, J. G., Dowell, T. G., Mooney, A. E., Dimmock, M. E., & Chu, L. (2021). Caring for the patient with severe or very severe Myalgic Encephalomyelitis/Chronic fatigue syndrome. Healthcare (Basel), 9(10), 1331. https://doi.org/10.3390/healthcare9101331
   PubMedGoogle Scholar
• Nacul, L., Authier, F. J., Scheibenbogen, C., Lorusso, L., Helland, I. B., Martin, J. A., Sirbu, C. A., Mengshoel, A. M., Polo, O., Behrends, U., Nielsen, H., Grabowski, P., Sekulic, S., Sepulveda, N., Estévez-López, F., Zalewski, P., Pheby, D. F. H., Castro-Marrero, J., Sakkas, G. K. & Lacerda, E. M. (2021). European Network on Myalgic Encephalomyelitis/Chronic fatigue syndrome (EUROMENE): Expert consensus on the diagnosis, service provision, and care of people with ME/CFS in Europe. Medicina (Kaunas), 57(5), 510. https://doi.org/10.3390/medicina57050510
   PubMed Web of Science ®Google Scholar
• Nettleton, S., Watt, I., O’Malley, L., & Duffey, P. (2005). Understanding the narratives of people who live with medically unexplained illness. Patient Education & Counseling, 56(2), 205–210. https://doi.org/10.1016/j.pec.2004.02.010
   PubMed Web of Science ®Google Scholar
• NICE. (2021a). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: Diagnosis and management. National Institute for Health and Care Excellence Retrieved December 18, 2022 from https://www.nice.org.uk/guidance/ng206
   Google Scholar
• NICE. (2021b). Severity of ME/CFS. National Institute for Health and Care Excellence NICE Retrieved December 18, 2022 from https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#diagnosis
   Google Scholar
• Nissen, T., & Wynn, R. (2014). The clinical case report: A review of its merits and limitations. BMC Research Notes, 7(1), 264. https://doi.org/10.1186/1756-0500-7-264
   PubMedGoogle Scholar
• O’Leary, D. (2018). Ethical management of diagnostic uncertainty: response to open peer commentaries on “Why bioethics should be concerned with medically unexplained symptoms”. The American Journal of Bioethics, 18(8), W6–W11. https://doi.org/10.1080/15265161.2018.1481241
   PubMed Web of Science ®Google Scholar
• Pendergrast, T., Brown, A., Sunnquist, M., Jantke, R., Newton, J. L., Strand, E. B., & Jason, L. A. (2016). Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome. Chronic Illness, 12(4), 292–307. https://doi.org/10.1177/1742395316644770
   PubMed Web of Science ®Google Scholar
• Radley, A., & Chamberlain, K. (2001). Health psychology and the study of the case: From method to analytic concern. Social Science & Medicine, 53(3), 321–332. https://doi.org/10.1016/S0277-9536(00)00320-8
   PubMed Web of Science ®Google Scholar
• Rasmussen, E. B. (2020). Making and managing medical anomalies: Exploring the classification of ‘medically unexplained symptoms’. Social Studies of Science, 50(6), 901–931. https://doi.org/10.1177/0306312720940405
   PubMed Web of Science ®Google Scholar
• Riessman, C. K. (2008). Narrative methods for the human sciences. Sage Publications.
   Google Scholar
• Roenneberg, C., Sattel, H., Schaefert, R., Henningsen, P., & Hausteiner-Wiehle, C. (2019). Functional somatic symptoms. Deutsches Arzteblatt International, 116(33), 553–560. https://doi.org/10.3238/arztebl.2019.0553
   PubMed Web of Science ®Google Scholar
• Salmon, P. (2007). Conflict, collusion or collaboration in consultations about medically unexplained symptoms: The need for a curriculum of medical explanation. Patient Education & Counseling, 67(3), 246–254. https://doi.org/10.1016/j.pec.2007.03.008
   PubMed Web of Science ®Google Scholar
• Sharpe, M., Chalder, T., & White, P. D. (2021). Evidence-based care for people with chronic fatigue syndrome and Myalgic Encephalomyelitis. Journal of General Internal Medicine, 37(2), 449–452. https://doi.org/10.1007/s11606-021-07188-4
   PubMed Web of Science ®Google Scholar
• Sharpe, M., & Greco, M. (2019). Chronic fatigue syndrome and an illness-focused approach to care: Controversy, morality and paradox. Medical Humanities, 45(2), 183–187. https://doi.org/10.1136/medhum-2018-011598
   PubMed Web of Science ®Google Scholar
• Twisk, F. N., & Maes, M. (2009). A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinology Letters, 30(3), 284–299.
   PubMed Web of Science ®Google Scholar
• Van den Bergh, O., Witthöft, M., Petersen, S., & Brown, R. J. (2017). Symptoms and the body: Taking the inferential leap. Neuroscience & Biobehavioral Reviews, 74(Pt A), 185–203. https://doi.org/10.1016/j.neubiorev.2017.01.015
   PubMedGoogle Scholar
• Vandenbroucke, J. P. (2001). In defense of case reports and case series. Annals of Internal Medicine, 134(4), 330–334. https://doi.org/10.7326/0003-4819-134-4-200102200-00017
   PubMed Web of Science ®Google Scholar
• van Dessel, N., den Boeft, M., van der Wouden, J. C., Kleinstäuber, M., Leone, S. S., Terluin, B., Numans, M. E., van der Horst, H. E., & van Marwijk, H. (2014). Non‐pharmacological interventions for somatoform disorders and medically unexplained physical symptoms (MUPS) in adults. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD011142.pub2
   PubMedGoogle Scholar
• Whitehead, L. C. (2006). Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis. Social Science & Medicine, 62(9), 2236–2245. https://doi.org/10.1016/j.socscimed.2005.09.008
   PubMed Web of Science ®Google Scholar
• Wojcik, W., Armstrong, D., & Kanaan, R. (2011). Chronic fatigue syndrome: Labels, meanings and consequences. Journal of Psychosomatic Research, 70(6), 500–504. https://doi.org/10.1016/j.jpsychores.2011.02.002
   PubMed Web of Science ®Google Scholar
• World Health Organisation. (2022). Chronic fatigue syndrome. Retrieved December 18, 2022 from https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome
   Google Scholar