Podcast: TPWKY — Episode 136 Long Covid: A long time coming

[SNT Gatchaman]

This Podcast Will Kill You: Season 7, Episode 1

Audio (1h 30m) | Transcript | About

Erin Welsh, PhD is a disease ecologist and epidemiologist now working full-time as a science communicator through her work on This Podcast Will Kill You.

Erin Allmann Updyke, MD, PhD is an epidemiologist and disease ecologist currently in a medical residency program to complete her training.

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.

So we're starting with long COVID, this post viral syndrome that has emerged and made a lot of headlines over the past few years. And I think it's going to be a really interesting exploration of a topic where our knowledge is evolving very rapidly and has evolved very rapidly over the course of just a few years. And we're gonna kind of follow this up next week with an episode on myalgic encephalomyelitis/chronic fatigue syndrome because there are, as you'll learn, a lot of parallels, a lot of similarities between these two conditions.

There are so many lessons that we should learn about long COVID, like how much we still don't know about viral infections and our immune response to them. How our measurements of disease are inadequate, a lot of the time splitting it into does it kill you or not? Like that's not necessarily a very helpful metric. The power of patient activism and how the medical system fails people who don't fall into tidy disease categories or respond to disease in any way outside of what is expected. How are political... There's more. How our political and medical infrastructure does not provide adequate support for people with poorly understood chronic diseases. How popular media representation of science as full of certainty creates unrealistic expectations and erodes public trust. Obviously there's a lot that we could cover.

 

[Kalliope]

Thanks for sharing. I am listening to it now and it's really good so far with several allusions to ME/CFS. Looking much forward to next episode.

 

[Kalliope]

The episode on ME/CFS is out now.

Presentation:

ME/CFS: What's in a name? (A lot, actually)

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.

https://thispodcastwillkillyou.com/2024/04/16/episode-137-me-cfs-whats-in-a-name-a-lot-actually/

They make a cocktail for each episode, the cocktail for the ME/CFS-episode is named "The understatement".

 

[SallyC]

I am a really big fan of this podcast but I went into the Long COVID episode with some trepidation, however the Erin's did a great job. I listened to the M.E. one this morning and it was really well done, from the perspective of people who are totally new to the subject. I suspect their listeners lean towards medical backgrounds because the podcast is highly detailed in that respect so it may reach some interesting people who've not considered the subject before.

 

[SNT Gatchaman]

Yes I thought they covered the history of ME/CFS particularly well. They probably didn't quite get PEM right, with some emphasis on pathological fatigue (which they correctly point out is utterly unlike healthy fatigue, and not tiredness). However, we ourselves have a long thread on trying to define and measure PEM and tease apart PEM from rapid muscle fatiguability etc.

Over the course of about 250 years or so, what we know today as ME/CFS, this condition has been known by many other names. If we start back at the earliest, that name would be febricula. Yep.

This was described in 1750 by Sir Richard Manningham as quote "little low continued fever, little transient chilliness, listlessness with great lassitude, and weariness all over the body, little flying pains, sometimes patient is a little delirious and forgetful."

So it doesn't seem to be a new illness, not in 1750, nor does it seem to be a new illness in the 1800s, nor does it seem to be a new illness in the 20th century, which is the opposite of what some physicians will have you believe-

Transcript

 

[rvallee]

The Symptoms, Nature, Causes, and Cure of the Febricula, or Little Fever: Commonly Called the Nervous or Hysteric Fever; ... by Sir Richard Manningham

Those damn wandering uteruses, causing fevers and whatnot.

A quick scan of the transcript looks pretty good.