In many ways, this week’s episode on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a companion piece to last week’s episode on Long Covid. The two share many similarities: a wide range of debilitating symptoms lingering long after infection, an illness which can transform from day to day or week to week, dismissal and downplaying by the medical community, a big question mark under “pathophysiological cause”, and so many others. These parallels can tell us a great deal about our concepts of disease and how we deal with uncertainty in science and medicine. But the differences between these two can be equally revealing. In this episode, we dig into what we know and what we hypothesize about the biological underpinnings of ME/CFS before tracing the twisty history of this disease, as popular perception switched back and forth and back again from “real” to “imagined” disease. We wrap up the episode with a look at some of the current research and promising treatments for ME/CFS. Both ME/CFS and Long Covid demonstrate the power of patients and patient advocates in raising awareness about poorly understood diseases and the impact that sharing personal stories can have. You can find more incredible work by Katie Walters, the provider of one of our firsthands for this episode, by clicking on this link.
| History | Biology |
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| Abbey, Susan E., and P. E. Garfinkel. “Neurasthenia and chronic fatigue syndrome.” Am J Psychiatry 148.12 (1991): 1638-1646. | Hornig, M., Montoya, J.G., Klimas, N.G., Levine, S., Felsenstein, D., Bateman, L., Peterson, D.L., Gottschalk, C.G., Schultz, A.F., Che, X. and Eddy, M.L., 2015. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science advances, 1(1), p.e1400121. |
| Angell, Edward B. “Neurasthenia.” The American Journal of Nursing 15.5 (1915): 364-371. | Maksoud, R., Magawa, C., Eaton-Fitch, N., Thapaliya, K. and Marshall-Gradisnik, S., 2023. Biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a systematic review. BMC medicine, 21(1), p.189. |
| Beard, George. “Neurasthenia, or nervous exhaustion.” The Boston Medical and Surgical Journal 80.13 (1869): 217-221. | Hanson, M.R., 2023. The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome. PLoS Pathogens, 19(8), p.e1011523. |
| Berger, David M. “The return of neurasthenia.” Comprehensive Psychiatry 14.6 (1973): 557-562. | Maya, J., 2023. Surveying the metabolic and dysfunctional profiles of T cells and NK cells in myalgic encephalomyelitis/chronic fatigue syndrome. International Journal of Molecular Sciences, 24(15), p.11937. |
| Byrne, Eleanor Alexandra. “Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” Medicine, Health Care and Philosophy 23.3 (2020): 371-379. | Grach, S.L., Seltzer, J., Chon, T.Y. and Ganesh, R., 2023, October. Diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome. In Mayo Clinic Proceedings (Vol. 98, No. 10, pp. 1544-1551). Elsevier. |
| Cooper, Lesley. “Myalgic Encephalomyelitis and the medical encounter 1.” Sociology of Health & Illness 19.2 (1997): 186-207. | Seton, K.A., Espejo-Oltra, J.A., Giménez-Orenga, K., Haagmans, R., Ramadan, D.J. and Mehlsen, J., 2024. Advancing research and treatment: an overview of clinical trials in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and future perspectives. Journal of Clinical Medicine, 13(2), p.325. |
| Friedberg, Fred. “Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade.” Fatigue: Biomedicine, Health & Behavior 8.1 (2020): 24-31. | Natelson, Benjamin H. “Myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia: definitions, similarities, and differences.” Clinical therapeutics 41, no. 4 (2019): 612-618. |
| Institute of Medicine (US). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. National Academies Press, 2015. | Abbi, B. and Natelson, B.H., 2013. Is chronic fatigue syndrome the same illness as fibromyalgia: evaluating the ‘single syndrome’hypothesis. QJM: An International Journal of Medicine, 106(1), pp.3-9. |
| Jenkins, R. “Epidemiology: Lessons from the past.” British medical bulletin 47.4 (1991): 952-965. | Mckay, P.G., Walker, H., Martin, C.R. and Fleming, M., 2021. Exploratory study into the relationship between the symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM) using a quasiexperimental design. BMJ open, 11(2), p.e041947. |
| McEvedy, Colin P., and A. W. Beard. “Concept of benign myalgic encephalomyelitis.” Br Med J 1.5687 (1970): 11-15. | Lim, E.J., Ahn, Y.C., Jang, E.S., Lee, S.W., Lee, S.H. and 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), pp.1-15. |
| McEvedy, Colin P., and A. W. Beard. “Royal Free epidemic of 1955: a reconsideration.” Br Med J 1.5687 (1970): 7-11. | Sanal-Hayes, N.E., Mclaughlin, M., Hayes, L.D., Mair, J.L., Ormerod, J., Carless, D., Hilliard, N., Meach, R., Ingram, J. and Sculthorpe, N.F., 2023. A scoping review of ‘Pacing’for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic. Journal of Translational Medicine, 21(1), p.720. |
| O’Leary, Diane. “Ethical classification of ME/CFS in the United Kingdom.” Bioethics 33.6 (2019): 716-722. | |
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| Torres-Harding, Susan, and Leonard A. Jason. “What is fatigue? History and epidemiology.” Fatigue as a window to the brain 1 (2005): 3-17. | |
| Wessely, Simon. “History of postviral fatigue syndrome.” British medical bulletin 47.4 (1991): 919-941. | |
| Wessely, Simon. “Chronic fatigue syndrome: a 20th century illness?.” Scandinavian Journal of Work, Environment & Health (1997): 17-34. | |
| Gilman, C.P. (1892). “The Yellow Wallpaper.” New England Magazine. Boston: Small and Maynard. | |
| Gilman, Charlotte Perkins. Why I Wrote the Yellow Wallpaper?.” Advances in psychiatric treatment 17.4 (2011): 265-265. |
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2 thoughts on “Episode 137 ME/CFS: What’s in a name? (A lot, actually)”
Thank you so much for this episode. I think this is the first time I’ve heard anyone talking about this be so validating and also so angry on our behalf.
I noticed you jumped from the 1970/80s to the 2010s. I will have had ME/CFS for 34 years this September and lived through those middle years. Is there any chance you will be doing/could do an addendum covering that time including the farce that was the PACE trial, which led to severe damage to many patients. That said, I really appreciated the firm statement that GET/CBT are not useful, and usually harmful (been there, done that, even if more mildly that some people).
Really though, I just want to say thank you. I am so used to ME/CFS patients being dismissed or ignored that it was wonderful to been seen for a change.
Wow! I have ME/CFS and this was the best synopsis that I have ever seen/heard. I was amazed at your level of empathy to understand the experience so well from the outside. I really appreciate such clear information and much of the history I had not heard before. You really connected the dots there.
Thank you for this very well researched overview and for your outstanding handling of it.
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