We’re back with our season 7 premiere, and we’re kicking things off with a topic that we’ve wanted to cover for a long time, even if the topic itself hasn’t been around all that long. That’s right, we’re taking on Long Covid. When SARS-CoV-2 began making its way around the world in 2020, it was thought to cause a mild illness in most people, with complete recovery a couple of weeks after first getting infected. But just a short time into the pandemic, people began to report debilitating symptoms lingering for months after recovery was “supposed” to happen. What started out as a trickle of reports soon turned into a tsunami, and this condition, which came to be known as Long Covid, transformed our understanding of this viral infection. In this episode, we explore how the concept of Long Covid was defined by those who experience it, who also continue to advocate for better treatment, more research, and real compassion from medical professionals. We examine what we currently know about the biology of this condition, and delve into some of the most promising research avenues that may give us a greater understanding of or ability to treat Long Covid. This story is still being written, but already it can tell us so much about our concepts of infectious disease and how the medical system treats those with “invisible” illness.
| History | Biology |
| Alwan, Nisreen A. “The teachings of Long COVID.” Communications Medicine 1.1 (2021): 15. | Davis, H.E., McCorkell, L., Vogel, J.M. and Topol, E.J., 2023. Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology, 21(3), pp.133-146. |
| Au, Larry, et al. “Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment.” SSM-Qualitative Research in Health 2 (2022): 100167. | Klein, J., Wood, J., Jaycox, J.R., Dhodapkar, R.M., Lu, P., Gehlhausen, J.R., Tabachnikova, A., Greene, K., Tabacof, L., Malik, A.A. and Silva Monteiro, V., 2023. Distinguishing features of Long COVID identified through immune profiling. Nature, 623(7985), pp.139-148. |
| Callard, Felicity, and Elisa Perego. “How and why patients made Long Covid.” Social science & medicine 268 (2021): 113426. | Peluso, M.J., Lu, S., Tang, A.F., Durstenfeld, M.S., Ho, H.E., Goldberg, S.A., Forman, C.A., Munter, S.E., Hoh, R., Tai, V. and Chenna, A., 2021. Markers of immune activation and inflammation in individuals with postacute sequelae of severe acute respiratory syndrome coronavirus 2 infection. The Journal of infectious diseases, 224(11), pp.1839-1848. |
| Cheston, Katharine, Marta-Laura Cenedese, and Angela Woods. “The long or the post of it? Temporality, suffering, and uncertainty in narratives following COVID-19.” Journal of Medical Humanities (2023): 1-18. | Oronsky, B., Larson, C., Hammond, T.C., Oronsky, A., Kesari, S., Lybeck, M. and Reid, T.R., 2023. A review of persistent post-COVID syndrome (PPCS). Clinical reviews in allergy & immunology, 64(1), pp.66-74. |
| Greenhalgh, Trisha, et al. “Six ‘biases’ against patients and carers in evidence-based medicine.” BMC medicine 13 (2015): 1-11. | Choutka, J., Jansari, V., Hornig, M. and Iwasaki, A., 2022. Unexplained post-acute infection syndromes. Nature medicine, 28(5), pp.911-923. |
| Hatch, Steven. “Uncertainty in medicine.” BMJ 357 (2017). | Crook, H., Raza, S., Nowell, J., Young, M. and Edison, P., 2021. Long covid—mechanisms, risk factors, and management. bmj, 374. |
| McCorkell, Lisa, et al. “Patient-Led Research Collaborative: embedding patients in the Long COVID narrative.” Pain reports 6.1 (2021): e913. | Rohrhofer, J., Graninger, M., Lettenmaier, L., Schweighardt, J., Gentile, S.A., Koidl, L., Ret, D., Stingl, M., Puchhammer‐Stöckl, E. and Untersmayr, E., 2023. Association between Epstein‐Barr‐Virus reactivation and development of Long‐COVID fatigue. Allergy. |
| Roth, Phillip H., and Mariacarla Gadebusch-Bondio. “The contested meaning of “long COVID”–Patients, doctors, and the politics of subjective evidence.” Social Science & Medicine 292 (2022): 114619. | Theoharides, T.C. and Conti, P., 2021. Be aware of SARS-CoV-2 spike protein: There is more than meets the eye. J Biol Regul Homeost Agents, 35(3), pp.833-8. |
| Rushforth, Alex, et al. “Long Covid–the illness narratives.” Social science & medicine 286 (2021): 114326. | Tabacof, L., Wood, J., Breyman, E., Tosto-Mancuso, J., Kelly, A., Wilkey, K., Zhang, C., Putrino, D. and Kontorovich, A., 2023. Dysautonomia, but Not Cardiac Dysfunction, Is Common in a Cohort of Individuals with Long COVID. Journal of Personalized Medicine, 13(11), p.1606. |
| Snow, Rosamund, Charlotte Humphrey, and Jane Sandall. “What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study.” BMJ open 3.11 (2013): e003583. | Davis, H.E., Assaf, G.S., McCorkell, L., Wei, H., Low, R.J., Re’em, Y., Redfield, S., Austin, J.P. and Akrami, A., 2021. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine, 38. |
| Wurz, Amanda, et al. “” I feel like my body is broken”: exploring the experiences of people living with long COVID.” Quality of Life Research 31.12 (2022): 3339-3354. | Xie, Y., Choi, T. and Al-Aly, Z., 2023. Long-term outcomes following hospital admission for COVID-19 versus seasonal influenza: a cohort study. The Lancet Infectious Diseases. |
| Blank, C.U., Haining, W.N., Held, W., Hogan, P.G., Kallies, A., Lugli, E., Lynn, R.C., Philip, M., Rao, A., Restifo, N.P. and Schietinger, A., 2019. Defining ‘T cell exhaustion’. Nature Reviews Immunology, 19(11), pp.665-674. | |
| Komaroff, A.L. and Lipkin, W.I., 2021. Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends in Molecular Medicine, 27(9), pp.895-906. | |
| Al-Aly, Z., 2023. Prevention of long COVID: progress and challenges. The Lancet Infectious Diseases. | |
| Iwasaki, A. and Putrino, D., 2023. Why we need a deeper understanding of the pathophysiology of long COVID. The Lancet Infectious Diseases, 23(4), pp.393-395. | |
| Lai, Y.J., Liu, S.H., Manachevakul, S., Lee, T.A., Kuo, C.T. and Bello, D., 2023. Biomarkers in long COVID-19: A systematic review. Frontiers in medicine, 10, p.1085988. |
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One thought on “Episode 136 Long Covid: A long time coming”
Thank you thank you THANK YOU Erin W. for your presentation and perspective on patients driving recognition of disease and pushing research forward. I am a biomedical researcher and also a person with chronic illness (not long COVID, though) and you really spoke to the reality that educated patients live in with the medical gaslighting and the negative tests. I’m one of those researchers trying to listen to patients and change things, but it’s going to take a lot of us and I truly appreciate both of you for the real talk about science and medicine that you put out there to educate so many of us.
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