Ep 137 ME/CFS: What’s in a name? (A lot, actually)
Apr 16, 2024
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Exploring the parallels between ME/CFS and Long Covid, the biological underpinnings of ME/CFS, the twisty history of the disease, the power of patient advocates, challenges in defining ME/CFS, immune system alterations, historical perceptions of similar conditions, stigma surrounding ME/CFS, and potential treatments and research strategies.
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Quick takeaways
The history of ME/CFS diagnosis reveals a transition in medical understanding and the impact of victim blaming and gaslighting on patients.
Current research and promising treatments for ME/CFS showcase the power of patient advocates in raising awareness about poorly understood diseases.
Deep dives
Historical Context of Neurosesmia
Neurosesmia, also known as exhaustion of the nervous system, found popularity in the 1860s with physician George Beard's article. It described symptoms including fatigue, nerve pain, indigestion, headaches, insomnia, depression, especially after slight exertion, affecting upper and middle-class New Yorkers primarily. Beard classified it as a sensitivity of the upper class, particularly in women, who absorbed lifelong stress.
The Evolution of ME-CFS Diagnosis and Misconceptions
The history of ME-CFS diagnosis reveals a transition in medical understanding, starting with Nerosynia's neurological diagnosis falling out of favor due to lack of consistent results and evolving into ME-CFS. Medical specialization divided neurology and psychiatry, leading to a mind-body divide. Misconceptions blamed patients, especially females and mothers, for their symptoms, leading to victim blaming and gaslighting.
Epidemics & Diagnostic Challenges of Epidemic Neuromyasthenia
Epidemics of epidemic neuromyasthenia, initially mistaken for polio but milder, affected hospital staff and military. Symptoms included fever, muscular weakness, fatigue, and long recovery periods. Iceland's outbreak linked to an enterovirus related to polio virus hinted at a possible cause. London's Royal Free Hospital outbreak in 1955 marked the term benign myalgic encephalomyelitis, challenged by misinterpretations and stigmatizing nicknames like Yuppie Flu, impacting research funding and patient trust.
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.