Disbelief, dualism and post-viral alliances in pandemic times
DOI:
https://doi.org/10.55016/3ekesc66Keywords:
long Covid, myalgic encephalomyelitis, chronic fatigue syndrome, psychosomatic, dualism, contested conditionsAbstract
This manuscript explores the ways in which the future of long COVID was both always circumscribed and expertly managed. When long COVID emerged, it was immediately recognized as a contested condition, and as such, was destined to carry the baggage of many complex forms of suffering that came before it. However, those suffering from long COVID managed to harness the energy of the pandemic crisis to produce new opportunities and new possible futures, not only for themselves, but for others with contested conditions. These dimensions are examined through a close look at an interesting alliance that formed between those suffering from long COVID and those diagnosed with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), most prominently in the United States and United Kingdom; how this alliance has been both fruitful and challenging; and the roots of dualism that underlie widespread ontological and moral assumptions within medicine.
References
Ashley, F. (2020) A critical commentary on ‘rapid-onset gender dysphoria’. The Sociological Review, 68(4), 779-799. https://doi.org/10.1177/0038026120934693
Au, L., Capotescu, C., Eyal, G., & Finestone, G. (2022) Long COVID and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment. SSM-Qualitative Research in Health, 2, 100167. https://doi.org/10.1016/j.ssmqr.2022.100167
Baker, R., & Shaw, E. (2007) Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): Summary of NICE guidance. BMJ, 335(7617), 446-448. https://doi.org/10.1136/bmj.39302.509005.ae
Barker, K. K. (2008) Electronic support groups, patient-consumers, and medicalization: The case of contested illness. Journal of Health and Social Behavior, 49(1), 20-36. https://doi.org/10.1177/002214650804900103
Bhui, K. S., Dinos, S., Ashby, D., Nazroo, J., Wessely, S., & White, P. D. (2011) Chronic fatigue syndrome in an ethnically diverse population: The influence of psychosocial adversity and physical inactivity. BMC Medicine, 9, 26. https://doi.org/10.1186/1741-7015-9-26
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
Callard, F. (2020) Epidemic time: Thinking from the sickbed. Bulletin of the History of Medicine, 94(4), 727-743. https://doi.org/10.1353/bhm.2020.0093
Callard, F., & Perego, E. (2021) How and why patients made Long COVID. Social Science & Medicine, 268, 113426. https://doi.org/10.1016/j.socscimed.2020.113426
Centers for Disease Control and Prevention (2024) What is ME/CFS? https://www.cdc.gov/me-cfs/about/index.html (Accessed 12 March 2024)
Chen, C., Haupert, S. R., Zimmermann, L., Shi, X., Fritsche, L. G., & Mukherjee, B. (2022) Global prevalence of post-coronavirus disease 2019 (COVID-19) condition or long COVID: A meta-analysis and systematic review. The Journal of Infectious Diseases, 226(9), 1593-1607. https://doi.org/10.1093/infdis/jiac136
Cheston, K., Cenedese, M.-L., & Woods, A. (2025) The long or the post of it? Temporality, suffering, and uncertainty in narratives following COVID-19. Journal of Medical Humanities, 46(1), 3-20. https://doi.org/10.1007/s10912-023-09824-y
Clarke, J. N., & James, S. (2003) The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57(8), 1387-1395. https://doi.org/10.1016/s0277-9536(02)00515-4
Crowley‐Matoka, M. (2020) Operating (for) legitimacy: Pain, surgical seriality, and “failed back surgery syndrome” in US biomedicine. American Ethnologist, 47(1), 58-71. https://doi.org/10.1111/amet.12868
Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology, 21(3), 133-146. https://doi.org/10.1038/s41579-022-00846-2
Devine, J. (2021, March 22nd) The dubious origins of long COVID. The Wall Street Journal. https://www.wsj.com/articles/the-dubious-origins-of-long-covid-11616452583
Dumes, A. A. (2020) Divided bodies: Lyme disease, contested illness, and evidence-based medicine. Duke University Press.
Dumit, J. (2006) Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine, 62(3), 577-590. https://doi.org/10.1016/j.socscimed.2005.06.018
Fiona (2020, March 20th) Covid19 and post-viral disability. Granite & Sunlight Blog. https://graniteandsunlight.wordpress.com/2020/03/20/covid19-and-post-viral-disability/
Frangou, C. (2021, June 30th) ‘I felt betrayed’: How Covid research could help patients living with chronic fatigue syndrome. The Guardian. https://www.theguardian.com/australia-news/2021/jun/30/i-felt-betrayed-how-covid-research-could-help-patients-living-with-chronic-fatigue-syndrome
Friesen, P. (2024) Why democratize psychiatric research? Philosophy, Psychiatry, & Psychology, 31(2), 117-133. https://doi.org/10.1353/ppp.2024.a930487
Garner, P. (2021, January 25th) Paul Garner: On his recovery from long COVID. BMJ Opinon. https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/
Greco, M. (1993) Psychosomatic subjects and the ‘duty to be well’. Personal agency within. Economy and Society, 22(3), 357-372. https://doi.org/10.1080/03085149300000024
Greco, M. (2019) On illness and value: Biopolitics, psychosomatics, participating bodies. Medical Humanities, 45(2), 107-115. https://doi.org/10.1136/medhum-2018-011588
Haltigan, J. D., Pringsheim, T. M., & Rajkumar, G. (2023) Social media as an incubator of personality and behavioral psychopathology: Symptom and disorder authenticity or psychosomatic social contagion? Comprehensive Psychiatry, 121, 152362. https://doi.org/10.1016/j.comppsych.2022.152362
Hughes, B. (2021, April 6th). All aboard the long COVID gravy train. The Science Bit. https://thesciencebit.net/2021/04/06/choo-choo-all-aboard-the-long-covid-gravy-train/
Institute of Medicine (2015) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). https://nap.nationalacademies.org/resource/19012/MECFS_KeyFacts.pdf
Jo Hsu, V. (2024) Framing the activists: Gender, race, and rhetorical disability in contested illnesses. Quarterly Journal of Speech, 110(2), 198-220. https://doi.org/10.1080/00335630.2023.2291895
Kaufmann, J., Gould, O., & Lloyd, V. (2023) Seeking Care for Long COVID: A narrative analysis of Canadian experiences. Journal of Patient Experience, 10. https://doi.org/10.1177/23743735231151770
Kleinman, A. M. (1977) Depression, somatization and the “new cross-cultural psychiatry”. Social Science & Medicine, 11(1), 3-9. https://doi.org/10.1016/0037-7856(77)90138-X
Komaroff, A. L. (2019) Advances in understanding the pathophysiology of chronic fatigue syndrome. JAMA, 322(6), 499-500. https://doi.org/10.1001/jama.2019.8312
Lambek, M. (1998) Body and mind in mind, body and mind in body: Some anthropological interventions in a long conversation. In M. Lambek & A. Strathern (Eds.), Bodies and persons: Comparative perspectives from Africa and Melanesia (pp. 103–124). Cambridge University Press.
Ledford, H., & Kozlov, M. (2025, April 7th) Long COVID activists fought Trump team's research cuts and won - for now. Nature. https://www.nature.com/articles/d41586-025-00995-3
Loewen Walker, R. (2014) The living present as a materialist feminist temporality. Women: a cultural review, 25(1), 46-61. https://doi.org/10.1080/09574042.2014.901107
Lokugamage, A., Taylor, S., & Rayner, C. (2020, July 10th) Patients’ experiences of “longcovid” are missing from the NHS narrative. BMJ Opinion, 10. https://blogs.bmj.com/bmj/2020/07/10/patients-experiences-of-longcovid-are-missing-from-the-nhs-narrative/
Long COVID SOS (2020) #messageinabottle. https://www.longcovidsos.org/film
Lorway, R. (2026) Crisis futurities in pathogen-responder relations in Kenya: A genealogical approach. Journal of Critical Public Health, Online First, https://doi.org/10.55016/pv3vc297
Lu, D. (2022, October 18th) ‘They can’t ignore us any more’: Five women on long COVID and medical misogyny. The Guardian. https://www.theguardian.com/society/2022/oct/18/long-covid-women-symptoms-medical-misogyny
ME Association (2023) Long COVID: What can we learn about the cause and management from ME/CFS? https://meassociation.org.uk/2023/05/long-covid-what-can-we-learn-about-the-cause-and-management-from-me-cfs/
Meriquez Vázquez, A. (2023, December 2nd) Still on the margins: Long COVID patients of color. Disability Visability Projects. https://disabilityvisibilityproject.com/2023/12/02/still-on-the-margins-long-covid-patients-of-color/
Mirin, A. A., Dimmock, M. E., & Jason, L. A. (2020) Research update: The relation between ME/CFS disease burden and research funding in the USA. Work, 66(2), 277-282. https://doi.org/10.3233/wor-203173
Monbiot, G. (2021, April 14th) Apparently just by talking about it, I’m super-spreading long COVID. The Guardian. https://www.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage
Moss-Morris, R., & Wrapson, W. (2003) Representational beliefs about functional somatic syndromes. In L. D. Cameron & H. Leventhal (Eds.), The self-regulation of health and illness behavior (pp. 119-137). Routledge.
Oomen, J., Hoffman, J., & Hajer, M. A. (2022) Techniques of futuring: On how imagined futures become socially performative. European Journal of Social Theory, 25(2), 252-270. https://doi.org/10.1177/1368431020988826
Owens, B. (2022) How “long covid” is shedding light on postviral syndromes. BMJ, 378, o2188. https://doi.org/10.1136/bmj.o2188
Page, L. A., & Wessely, S. (2003) Medically unexplained symptoms: Exacerbating factors in the doctor-patient encounter. Journal of the Royal Society of Medicine, 96(5), 223-227. https://doi.org/10.1177/014107680309600505
Patient-Led Research Collaborative (n.d.) About the patient-led research collaborative. https://patientresearchcovid19.com/ (Accessed 12 March 2024)
Pausé, C., Parker, G., & Gray, L. (2021) Resisting the problematisation of fatness in COVID-19: In pursuit of health justice. International Journal of Disaster Risk Reduction, 54, 102021. https://doi.org/10.1016/j.ijdrr.2020.102021
Petrie, K. J., & Wessely, S. (2002) Modern worries, new technology, and medicine. BMJ, 324(7339), 690-691. https://doi.org/10.1136/bmj.324.7339.690
Phillips, S., & Williams, M. A. (2021) Confronting our next national health disaster—long-haul Covid. New England Journal of Medicine, 385(7), 577-579. https://doi.org/10.1056/nejmp2109285
Prainsack, B. (2022) The roots of neglect: Towards a sociology of non-imagination. Tecnoscienza–Italian Journal of Science & Technology Studies, 13(2), 13-34. https://doi.org/10.6092/issn.2038-3460/17577
Rehmeyer, J., & Tuller, D. (2017, September 25th) Why did it take the CDC so long to reverse course on debunked treatments for chronic fatigue syndrome? STAT. https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/
Risør, M. B., & Lillevoll, K. (2021) Caught up in care: Crafting moral subjects of chronic fatigue. Medical Anthropology, 40(5), 432-445. https://doi.org/10.1080/01459740.2021.1883011
Rogers, E. L. (2024) A syndrome in search of a virus: ME/CFS, disease paradigms, and the social function of pathogens. Osiris, 39(1), 280-297. https://doi.org/10.1086/730432
Roitman, J. (2013) Anti-crisis. Duke University Press.
Roth, P. H., & Gadebusch-Bondio, M. (2022) The contested meaning of "long COVID" - Patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 292, 114619. https://doi.org/10.1016/j.socscimed.2021.114619
Royal Australian College of General Practitioners (2024) Incremental physical activity for chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME). https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/handi-interventions/exercise/incremental-physical-activity-for-cfs-me (Accessed 5 Oct 2026)
Schillings, C., Jarczok, M. N., Gündel, H., & Weimer, K. (2022) Stress mindset: friend or enemy? Trajectories of stress mindset measures in psychosomatic patients and its association with heart rate variability – Results from the MEPP Study. American Psychosomatic Society Annual Scientific Meeting “Embracing heterogeneity: towards a more inclusive, and patient-tailored clinical care”, Long Beach. https://www.researchgate.net/publication/359209400_Stress_Mindset_Friend_or_Enemy_Trajectories_of_Stress_Mindset_Measures_in_Psychosomatic_Patients_and_its_Association_with_Heart_Rate_Variability_-_Results_from_the_MEPP_Study
Sharpe, M. (2021) Post-COVID-19 syndrome (long-COVID) Seminar presentation. Avaible at: https://www.swissre.com/dam/jcr:788aa287-7026-430a-8c14-f656421b6e71/swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.pdf
Shepler, S. (2023) Anti-crisis and lessons (not) learned. Desirable/Undesirable Futures: Scholarship on the Political, Ethical, and Moral Economies of Post-Pandemic Recovery Conference, July 10-13, 2023, Vancouver, Canada.
Showalter, E. (1985) The female malady: Women, madness, and English culture, 1830-1980. Penguin Books.
Siegel, Z. A., Brown, A., Devendorf, A., Collier, J., & Jason, L. A. (2018) A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013. Chronic Illness, 14(1), 3-12. https://doi.org/10.1177/1742395317703175
Simmons, M. (2022, September 7th) Is long COVID all in the mind? The Spectator. https://www.spectator.co.uk/article/who-s-most-likely-to-report-long-covid/
Smith, C., & Wessely, S. (2014) Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. Journal of Neurology, Neurosurgery & Psychiatry, 85(2), 214-219. https://doi.org/10.1136/jnnp-2012-303208
Solve M.E. (n.d.) ME/CFS & Long COVID. https://solvecfs.org/me-cfs-long-covid/ (Access 12 March 2024)
Spandler, H., & Allen, M. (2018) Contesting the psychiatric framing of ME/CFS. Social Theory & Health, 16, 127-141. https://doi.org/10.1057/s41285-017-0047-0
Subbaraman, N. (2021) US health agency will invest $1 billion to study long COVID. Nature, 591(7850), 356-356. https://doi.org/10.1038/d41586-021-00586-y
Tsampasian, V., Elghazaly, H., Chattopadhyay, R., Debski, M., Naing, T. K. P., Garg, P., …& Vassiliou, V. S. (2023) Risk factors associated with post−COVID-19 condition: A systematic review and meta-analysis. JAMA Internal Medicine, 183(6), 566-580. https://doi.org/10.1001/jamainternmed.2023.0750
Twomey, R., DeMars, J., Franklin, K., Culos-Reed, S. N., Weatherald, J., & Wrightson, J. G. (2022) Chronic fatigue and postexertional malaise in people living with long covid: An observational study. Physical Therapy, 102(4), pzac5. https://doi.org/10.1093/ptj/pzac005
Ware, N. C. (1992) Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6(4), 347-361. https://doi.org/10.1525/maq.1992.6.4.02a00030
Werner, A., & Malterud, K. (2003) It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409-1419. https://doi.org/10.1016/S0277-9536(02)00520-8
World Health Organization (2020, February) Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19). https://www.who.int/docs/default-source/coronaviruse/who-china-joint-mission-on-COVID-19-final-report.pdf
Yong, E. (2022, September 26th) Long COVID has forced a reckoning for one of medicine’s most neglected diseases. The Atlantic. https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
Yong, E. (2023, December 11th) Reporting on long COVID taught me to be a better journalist. The New York Times. https://www.nytimes.com/2023/12/11/opinion/long-covid-reporting-lessons.html
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