Speaker 1: I got COVID in January of twenty twenty two. I
Speaker 1: was fully vaccinated at the time, although somewhat ironically, I
Speaker 1: was just about due for a booster when I got sick.
Speaker 1: I was sick with the acute infection for about eighteen
Speaker 1: days total, and I wasn't hospitalized, but I did spend
Speaker 1: an afternoon emergency, which I don't remember much of as
Speaker 1: I was in and out of consciousness. After the acute infection,
Speaker 1: I returned to work, but I quickly found that I
Speaker 1: couldn't work a full day. I had terrible fatigue, dizziness,
Speaker 1: nausea trouble, sleeping, headaches, brain fog, and cognitive difficulties, and
Speaker 1: for some reason I was really light sensitive and had
Speaker 1: sore eyes. The cognitive difficulties were definitely the worst. I
Speaker 1: could only work a couple hours before it felt like
Speaker 1: my brain would just shut down, and once I couldn't
Speaker 1: figure out how to send an email after I'd written
Speaker 1: it and just deleted it instead. I also couldn't do
Speaker 1: all of my work tasks. Some of my work involved
Speaker 1: writing code, and I couldn't do that, So I really
Speaker 1: could only do this more simple parts of my job,
Speaker 1: and only for a couple hours a day. If I
Speaker 1: felt a little better one day and worked longer, the
Speaker 1: next day would be much much worse. It was a
Speaker 1: temporary job, so I struggled through the last two months
Speaker 1: working modified hours, and afterwards I had a month off
Speaker 1: between contracts, during which I slowly improved. I went back
Speaker 1: to work full time in May of twenty twenty two.
Speaker 1: I was still experiencing fatigue, headaches, and some brain fog,
Speaker 1: but I could work, and I continued to improve over
Speaker 1: the summer, and by August or September I felt like
Speaker 1: I was nearly back to normal. At that point, I
Speaker 1: still got headaches when I overdid it physically, and I
Speaker 1: was slightly more tired than normal and still had to
Speaker 1: rest a little bit more, but mostly I could live
Speaker 1: life as usual. I was socializing, exercising, working, and I
Speaker 1: thought I was essentially back to full health. But in
Speaker 1: November of twenty twenty two, my long COVID symptoms came back.
Speaker 1: I will probably never know what caused the relapse. I
Speaker 1: had moved house and moved offices and experienced distressful event
Speaker 1: all in October, but I might have gotten COVID a
Speaker 1: second time. I never tested positive, but rapid tests weren't
Speaker 1: particularly accurate for the variant that was circulating at the time,
Speaker 1: and I didn't have access to a PCR test this time.
Speaker 1: The physical symptoms were much worse than what I'd experienced before.
Speaker 1: On top of all the other things that I had
Speaker 1: in the months after my infection, I also experienced muscle pain.
Speaker 1: When I would walk for ten minutes or go up
Speaker 1: the stairs, it would feel as if I had done
Speaker 1: thousands and thousands of squats the day before. I also
Speaker 1: experienced unexplained muscle weakness. Sometimes I couldn't get myself out
Speaker 1: of the bath and my partner would have to lift
Speaker 1: me out, and he also had to help me up
Speaker 1: the stairs. I also experienced anxiety of a type I'd
Speaker 1: never had before, and other weird symptoms. For instance, my
Speaker 1: taste and sense of smell were affected for the first time.
Speaker 1: The brain fog and cognitive stuff wasn't quite as bad
Speaker 1: as the first round, so I was able to keep working,
Speaker 1: although really not do much else for most of the winter.
Speaker 1: But again I slowly improved. I started to be able
Speaker 1: to walk further, cook dinner on top of working, and
Speaker 1: I thought I was back on the path to recovery
Speaker 1: again by the time spring rolled around. In April twenty
Speaker 1: twenty three, I had a surgery that I'd been putting
Speaker 1: off for about a year because of long COVID. I
Speaker 1: healed from the surgery well, but for some reason, when
Speaker 1: I returned to work at the end of May, going
Speaker 1: back triggered another, much, much worse relapse. It was as
Speaker 1: if my central nervous system had collapsed. I couldn't walk
Speaker 1: properly and had a weird, stilted gait that I couldn't control.
Speaker 1: I was extremely dizzy and my sense of balance was
Speaker 1: heavily affected. I would fall against door frames and things
Speaker 1: like that, and my partner even took me to emergency
Speaker 1: to make sure that I wasn't having a stroke. I
Speaker 1: haven't been able to return to work since. For the
Speaker 1: summer of twenty twenty three, I was bedbound for the
Speaker 1: first two and a half weeks and couldn't do nearly
Speaker 1: anything for myself, and I was housebound for the rest
Speaker 1: of the summer. I had extreme fatigue, extreme dizziness. The
Speaker 1: nausea that I'd experienced before progressed to vomiting. I had
Speaker 1: other stomach symptoms. I had weird visual disturbances as if
Speaker 1: my focus was lagging and an elevated heart rate, my
Speaker 1: activities were severely restricted. I couldn't drive, I couldn't tolerate
Speaker 1: reading for most of the summer, or looking at screens
Speaker 1: at all, which meant no TV as well as no
Speaker 1: computer work. Everything was exhausting. Brushing my teeth was exhausting,
Speaker 1: Bathing was exhausting. Even eating was exhausting, and I needed
Speaker 1: to take multiple even just brushing my teeth. I was
Speaker 1: unable to tolerate standing or even sitting upright, so I
Speaker 1: spent most of the summer lying flat or reclined, listening
Speaker 1: to audiobooks, and generally being bored out of my skull
Speaker 1: on top of everything else, in August I was diagnosed
Speaker 1: with posteral orthostatic tachycardia syndrome or POTS, which helped explain
Speaker 1: some of the dizziness, the inability to remain upright, and
Speaker 1: of course, the elevated heart rate. The most difficult things
Speaker 1: in all of this have been not knowing how much
Speaker 1: or even if my condition will improve. Pacing is also
Speaker 1: unbelievably difficult. Figuring out what level of activity is okay
Speaker 1: is really hard because there's a delay in consequences. If
Speaker 1: I do something one day, I won't know what effect
Speaker 1: it will have on my symptoms until the next day
Speaker 1: or a couple days later. The other difficult thing about
Speaker 1: pacing is not overdoing it on days when you feel
Speaker 1: a little bit better, because in my experience, that almost
Speaker 1: inevitably leads to a crash. The boredom and isolation are
Speaker 1: also really difficult for most of the summer, seeing a
Speaker 1: friend for even an hour or so would completely exhaust
Speaker 1: me and make all my symptoms worse. And there's also
Speaker 1: the loss of independence. I was a very independent person
Speaker 1: before all of this, and becoming reliant on another person
Speaker 1: for pretty much everything, from making my meals to driving
Speaker 1: me to appointments was a really difficult adjustment to me.
Speaker 1: And there are also small things. It seems kind of silly,
Speaker 1: but not being able to condition my hair because it
Speaker 1: would be too much on top of washing it was
Speaker 1: so so frustrating and still is. There are things that
Speaker 1: are helping. I'm on a beta blocker now, which was
Speaker 1: prescribed for the POTS, which helps control my heart rate
Speaker 1: and has also allowed me to slowly become adjusted to
Speaker 1: being upright more often. I was also prescribed low dose naltrexone,
Speaker 1: which has helped me slowly increase what activities I can do.
Speaker 1: During the summer, any increase in activities resulted in a crash,
Speaker 1: and I really made no forward progress at all. So
Speaker 1: the low dose meltrekzone has really been a game changer,
Speaker 1: even if progress is still slow. I also saw a
Speaker 1: neurological optometrist, so I got a new glasses prescription that's
Speaker 1: already helping much much more than I ever thought it could.
Speaker 1: It's easier to read, and I can already tolerate screens
Speaker 1: a little better. I have far far fewer headaches, my
Speaker 1: eyes are less sore, and I'm also much less light sensitive.
Speaker 1: It's also helped a little with dizziness and nausea, and
Speaker 1: I'm really looking forward to starting vision therapy soon. So
Speaker 1: now it's just over two years into the roller coaster
Speaker 1: that has been my long COVID experience, and where I
Speaker 1: am now is of course, I've been tested for a
Speaker 1: million different things just to eliminate other potential causes of
Speaker 1: my symptoms, and although I'm still reliant on my partner
Speaker 1: for driving and nearly all of the household tasks, I'm
Speaker 1: actually feeling pretty hopeful My quality of life has improved
Speaker 1: due to the medication, and I think also to aggressive pacing.
Speaker 1: I'm still resting the vast majority of the day and
Speaker 1: pacing every single activity, whether it's social or mental effort,
Speaker 1: or physical or even emotional. But I can now see
Speaker 1: friends a lot more easily, which has made a huge difference.
Speaker 1: And most importantly, I'm continuing to make forward progress, which
Speaker 1: I think has been the most important for my mental health.
Speaker 1: Even if it is really slow, I know that I'll
Speaker 1: very likely always have to live within limits, So for now,
Speaker 1: I'm just trying to focus on small milestones like being
Speaker 1: able to sit up a little longer, make myself breakfast,
Speaker 1: and going for walks in our yard, which are great
Speaker 1: because I can measure my progress based on how much
Speaker 1: further I can go without causing a crash.
Speaker 2: Thank you so much for sharing your story with us.
Speaker 3: Yeah, thank you. We really appreciate it.
Speaker 2: We do, we do.
Speaker 3: Hi.
Speaker 2: I'm erin Welsh.
Speaker 3: And I'm erin Allman Updyke.
Speaker 2: And this is this podcast will kill you.
Speaker 3: We are coming to you today season seven.
Speaker 2: I know when I started to say Hi, I'm Aaron Welch, Hi,
Speaker 2: I'm Aaron Alman, I like forgot what I was supposed
Speaker 2: to say next, which is really bizarre. But I started
Speaker 2: to think about like our presentations, like and we're the
Speaker 2: hosts of Anyway. It hasn't been that long.
Speaker 3: It really hasn't.
Speaker 2: It really hasn't. Like today, we're recording this today on
Speaker 2: the same day that our final episode of season six
Speaker 2: came out Metaphause.
Speaker 3: If you haven't listened, go check it out. It's a
Speaker 3: great one.
Speaker 2: It really is, It really is. But yeah, there is
Speaker 2: so much that we're going to be changing up in
Speaker 2: season seven. We're really excited.
Speaker 3: We are very nervous, very thrilled, and.
Speaker 2: Going to be very busy. Yes, weekly releases.
Speaker 3: How does that sound coming to you? Season seven weekly?
Speaker 2: Really? Baby?
Speaker 3: Fifty full episodes this season.
Speaker 2: Woh. I just got sweaty thinking about that me too.
Speaker 2: It's gonna be okay, though, But also we're going to
Speaker 2: be changing things up a bit. You know, we've been
Speaker 2: talking on this podcast for years. Every episode, I feel
Speaker 2: like we're always saying, oh, we want to cover that
Speaker 2: in a future episode, or oh, we really should do
Speaker 2: a series on X, Y and Z, or oh wouldn't
Speaker 2: that be a fun topic to get into, And we
Speaker 2: just haven't really done as much of that, and now's
Speaker 2: the time.
Speaker 3: Yeah, we have plans for little mini series or like
Speaker 3: multi episode arcs if you will. We have so many
Speaker 3: book Club episodes lined up, and I mean.
Speaker 2: I mean, come on, like, there's always room on your
Speaker 2: shelf or virtual shelf or whatever.
Speaker 3: And of course we have plenty of sort of more
Speaker 3: traditional as it were, tpwky fair.
Speaker 2: We we do, we do. I mean, we're bringing you
Speaker 2: everything is our what our hope is really the whole world's.
Speaker 3: Just kidding, but the whole world. Oh, it's going to
Speaker 3: be fun. Though. We're going to dive into let's see
Speaker 3: the wellness genre. Mm hmmm, that's right. We're dipping our
Speaker 3: toes in that. We're going to cover more general medical topics.
Speaker 2: I think a few kind of like oddball ones, you know.
Speaker 2: Maybe we'll get into strange stories from the history of
Speaker 2: science and medicine. Love it. Medical inventions, yes, medical medical inventions.
Speaker 2: I'm really excited about that. And maybe a series on pregnancy.
Speaker 3: That's in the works. It's in the works, like.
Speaker 2: All mini teasers, but they're very real teasers that you
Speaker 2: should see. Our spreadsheet it is packed.
Speaker 3: We finally organized our spreadsheets organize our spreadsheet organized word document,
Speaker 3: rambling word documents from like seven years ago, literally early
Speaker 3: seven years ago into a spreadsheet that we can actually
Speaker 3: make some sort of sense of. And I've been like
Speaker 3: referring back to it every day, being like, oh, yeah,
Speaker 3: that's what's happening next.
Speaker 2: Oh yeah, I should find papers about that.
Speaker 3: It's going to be it's going to be great. So
Speaker 3: we're excited to start our journey into season seven today
Speaker 3: with an episode that is a long time coming erin.
Speaker 2: Was that a pun intended a little bit?
Speaker 3: Yeah?
Speaker 2: Okay, nice, nice, Yes, this really has been a long
Speaker 2: time coming, and it's kind of like a the first
Speaker 2: of a kind of two parter episode. We're starting with
Speaker 2: long COVID, this post viral syndrome that has emerged and
Speaker 2: made a lot of headlines over the past few years,
Speaker 2: and that is I think it's going to be a
Speaker 2: really interesting exploration of a topic that is where our
Speaker 2: knowledge is evolving very rapidly and has evolved very rapidly
Speaker 2: over the course of just a few years. And we're
Speaker 2: gonna kind of follow this up next week with an
Speaker 2: episode on myalgic and cephalomyelitis slash chronic fatigue syndrome because
Speaker 2: there are, as you'll learn, a lot of parallels, a
Speaker 2: lot of similarities between these two conditions, and I think
Speaker 2: that and we're going to delve into different aspects in
Speaker 2: each of them. But long story short, as if we've
Speaker 2: ever made a long story.
Speaker 3: Story short, we only make them longer.
Speaker 2: Long story short, I think it's going to give us
Speaker 2: a lot to think about in terms of like, what
Speaker 2: do we know about post virus syndrome or post viral
Speaker 2: infection syndromes, and how has the medical and scientific community
Speaker 2: treated such confusing.
Speaker 3: And difficult to pin down concepts symptoms. Yes, I am
Speaker 3: also really excited to start with this episode on long COVID,
Speaker 3: specifically because we have covered aarin so much about COVID,
Speaker 3: and it was actually four years ago this month that
Speaker 3: we're recording, not that this will come out, but four
Speaker 3: years ago February that we released our very first episode
Speaker 3: on coronavirus in general, and after that we, if you
Speaker 3: haven't listened, released twenty chapters a whole series that we
Speaker 3: called Anatomy of a Pandemic, covering everything that we could
Speaker 3: about COVID. But never in any of those twenty one
Speaker 3: episodes did we talk about.
Speaker 2: Long COVID, right, And like the question why, I think
Speaker 2: is a good question. Why didn't we talk about long COVID. Yeah,
Speaker 2: And I'll kind of get into that a little bit,
Speaker 2: not about us personally, but about how science and medicine
Speaker 2: often deals with uncertainty. And I think one of our
Speaker 2: strategies is like we don't know enough and so we
Speaker 2: don't want to say anything that we're not sure about.
Speaker 2: But anyway, getting more into that, Yeah, Also, I think
Speaker 2: that like revisiting those episodes is a really interesting opportunity
Speaker 2: to remind ourselves of how much we didn't know. Like
Speaker 2: there are so many things that are just innate knowledge
Speaker 2: about COVID now.
Speaker 3: I know, I know. I read through my notes from
Speaker 3: our very first coronavirus episode where we talked about stars
Speaker 3: and mers and this we called it at the time
Speaker 3: n COVD.
Speaker 2: Yes, Oh my gosh.
Speaker 3: Yeah, so it's it's interesting. So yeah, it's it's gonna
Speaker 3: be a good episode. I'm excited about it and me too.
Speaker 3: But first, of course, but first.
Speaker 2: We've talked so much, but we're excited to be back,
Speaker 2: so forgive us.
Speaker 3: I know, I know, But first it's quarantine anytime.
Speaker 2: It is what are we drinking this week?
Speaker 3: Well, we can drink nothing other than the Long Haul.
Speaker 2: Yeah, yeah, And it's a pretty simple recipe. We may
Speaker 2: have even done it before.
Speaker 3: Very possible.
Speaker 2: It's very possible inspired by the Finish Long Drink, which
Speaker 2: is basically gin and like a fruit soda of some kind,
Speaker 2: typically grapefruit soda. So we'll see. I mean, right now,
Speaker 2: I'm not drinking anything but water, but we'll see what
Speaker 2: happens when it comes time to actually make it, whether
Speaker 2: I'll choose grapefruit soda or like crimeberry soda. So we
Speaker 2: will post the full recipe for the Long Haul on
Speaker 2: our website. This podcast will kill you dot com as
Speaker 2: well as on all of our social media channels. And
Speaker 2: what else do we say here?
Speaker 3: We usually say check out our website if you haven't already,
Speaker 3: it's dot com on it. You can find links to
Speaker 3: our Goodreads list. You can check out all the books
Speaker 3: for the book club there and our bookshop dot org
Speaker 3: affiliate account. You can find blood Bobile, who does all
Speaker 3: of the music for our episodes. I said it weird
Speaker 3: you can do. You can find our transcripts from every episode,
Speaker 3: sources from all of our episodes, our merch our Patreon.
Speaker 3: There's just so much there.
Speaker 2: Oh, there's a submit your first hand account form.
Speaker 3: Yes, one last thing. We've already said that this season
Speaker 3: is going to be full of fun and special surprises.
Speaker 3: We're starting it off even today because this episode is
Speaker 3: going to be in a slightly different order.
Speaker 2: I really had no idea what you were about to say.
Speaker 2: I was like, whoa, it's a new surprise.
Speaker 3: Another new surprise, Aaron, can you take it away?
Speaker 2: I certainly can. Let's just take a quick break and
Speaker 2: then get into it.
Speaker 3: Okay.
Speaker 2: Overwhelmingly, the main characters in histories of disease and medicine
Speaker 2: are are either the discoverers like the scientists or the
Speaker 2: researchers who identify the cause of a certain disease or
Speaker 2: develop a treatment, or the main characters are the diseases themselves,
Speaker 2: like the plague, tracing how it's spread across Europe and
Speaker 2: impacted this or that town. But rarely are the people
Speaker 2: with the disease portrayed as being central to the narrative,
Speaker 2: despite the fact that without them there would be no narrative,
Speaker 2: and they're mostly described passively rather than actively, as people
Speaker 2: that a disease is happening too. As though they have
Speaker 2: no agency over their own story, and this telling and
Speaker 2: one that I am definitely guilty of on the podcast,
Speaker 2: it can do a huge disservice to the people living
Speaker 2: with or dying from a disease, or even just in
Speaker 2: the widespread recognition that people not directly involved in biomedicine
Speaker 2: can make a huge impact like they can and long
Speaker 2: COVID is kind of a great example of this. And
Speaker 2: sometimes these narratives do include the contributions of people outside
Speaker 2: the realms of healthcare or research, such as with HIV AIDS,
Speaker 2: activists demanding better research, better access, and better care, or
Speaker 2: people with chronic pain collectively saying stop the medical gaslighting.
Speaker 2: But often as time goes on and as histories are
Speaker 2: more filled in, those patient or activist contributions are often
Speaker 2: overwritten as we learn more about, you say, the path
Speaker 2: of physiology of a disease, or as a diagnostic tool
Speaker 2: or treatment is developed, and then that's what becomes the
Speaker 2: central narrative. Yeah, that's so true, It's right. I was like,
Speaker 2: WHOA all the time. How many patient stories, patient centered
Speaker 2: stories have I just glossed over in every single episode
Speaker 2: of this podcast? Probably a lot? And I really hope
Speaker 2: that this doesn't happen with long COVID, because I think
Speaker 2: that long COVID is one of the most incredible examples
Speaker 2: of people coming together to advocate for themselves for better care,
Speaker 2: to change the way we recognized or characterize a disease,
Speaker 2: to raise awareness about a condition that was and sometimes
Speaker 2: is very much maybe even often is still dismissed because
Speaker 2: of its fuzzy edges it's hard to define qualities, and
Speaker 2: its laundry list of symptoms, and its lack of a
Speaker 2: clear diagnostic test. There are so many lessons that we
Speaker 2: should learn about long COVID, like how much we still
Speaker 2: don't know about viral infections and our immune response to them,
Speaker 2: How our measurements of disease are inadequate a lot of
Speaker 2: the time, splitting it into does it kill you or not,
Speaker 2: like that's not necessarily a very helpful metric, the power
Speaker 2: of patient activism, and how the medical system fails people
Speaker 2: who don't fall into tidy disease categories or respond to
Speaker 2: disease in any way outside of what is expected. How
Speaker 2: are political There's more, how our political and medical infrastructure
Speaker 2: does not provide adequate support for people with poorly understood
Speaker 2: chronic diseases, how popular media representation of science as full
Speaker 2: of certainty creates unrealistic expectations and erodes public trust. Obviously,
Speaker 2: there's a lot that we could cover.
Speaker 3: We're going to go in detail on all of it, right, Yes.
Speaker 2: Yes, one thesis per how but what I want to
Speaker 2: do for this episode is to begin at the beginning,
Speaker 2: sort of take us through when long COVID first became
Speaker 2: a hashtag, to when medical awareness increased, and how it
Speaker 2: eventually it became through the work of people with long COVID,
Speaker 2: through these patient advocates, an actual medical entry. Yeah, and
Speaker 2: then I want to get a bit philosophical because I
Speaker 2: can't help it. I want to get into the different
Speaker 2: ways that science and medicine handles uncertainty. And I'm hoping
Speaker 2: that at the end it'll be kind of like a
Speaker 2: good lead in at least to like next week's episode
Speaker 2: on my algic and cephalomyelitis as sort of like a
Speaker 2: compare contrast, what are we still not doing enough in
Speaker 2: these different diseases?
Speaker 3: Okay, excellent?
Speaker 2: Yeah, it was like such a long intro paragraph. Can't
Speaker 2: help myself. I was nervous writing it. But going back
Speaker 2: to the Beginning in late twenty nineteen, reports of a
Speaker 2: pneumonia of unknown cause began circulating. It's like really hard
Speaker 2: to write that, yeah, yeah, And by January twenty twenty,
Speaker 2: cases of this unknown pneumonia were reported in different countries
Speaker 2: around the world. The cat was out of the bag,
Speaker 2: the egg shell had been cracked, the dam had been broken.
Speaker 2: Pandora's box had been opened. Like whatever metaphor you want
Speaker 2: to use for the house gates that would eventually become
Speaker 2: COVID nineteen. I feel like it's hard to remember now
Speaker 2: after years of reading about or hearing about COVID, but
Speaker 2: at that point in time, in early twenty twenty, we
Speaker 2: were still dealing with an incredible amount of uncertainty about
Speaker 2: what this disease was. Like, I mean, we didn't even
Speaker 2: have like our name for it. Changed By early twenty twenty,
Speaker 2: we knew that it could be deadly. We knew that
Speaker 2: it could cause severe disease. We knew it was a
Speaker 2: respiratory infection, but we also knew that for most people
Speaker 2: it seemed to cause mild infection, and that full recovery
Speaker 2: would happen within a matter of a couple of weeks
Speaker 2: or maybe three to six weeks for someone who had
Speaker 2: a severe case of the disease. That was the line,
Speaker 2: that was the narrative. We heard it over and over
Speaker 2: and over again. And that was the case for many people,
Speaker 2: but for others absolutely not at all. And by March
Speaker 2: and April twenty twenty, people began sharing on social media
Speaker 2: there are symptoms that lingered long after they quote unquote
Speaker 2: should have recovered, and some news outlets published stories about
Speaker 2: support groups founded by patients, as well as first hand
Speaker 2: accounts of the long road to recovery that some people
Speaker 2: faced when it came to this disease, and some of
Speaker 2: these stories gained quite a bit of attention, like that
Speaker 2: of infectious disease professor Paul Garner, who described weeks of
Speaker 2: suffering through a quote roller coaster of ill health, extreme emotions,
Speaker 2: and utter exhaustion end quote, which he named the COVID
Speaker 2: long taiale. And one of our faves, Ed Young, published
Speaker 2: an article called COVID nineteen can last for several months,
Speaker 2: which featured the stories of several people who were experiencing
Speaker 2: lingering and incapacitating illness, often cyclical, long after recovery was
Speaker 2: quote unquote supposed to happen as well as and This
Speaker 2: article also mentioned support groups that helped people navigate this
Speaker 2: illness or at least provide empathy and understanding. This article
Speaker 2: is where the term long haulers first appears the now
Speaker 2: more commonly used term long COVID. I think it's maybe
Speaker 2: that's like equal, but I think long COVID is like
Speaker 2: the medical entry.
Speaker 3: Yeah, it's it is and it's okay, the it's what
Speaker 3: is like now also on like the disability website and
Speaker 3: everything like that too, So yes, still not. I've got
Speaker 3: feelings about all the interestings that are also used in
Speaker 3: the quote medical literature.
Speaker 2: But long covid Okay, long covid Yeah. And long COVID
Speaker 2: was first used as a hashtag in a tweet on
Speaker 2: May twentieth, twenty twenty, by researcher doctor Eliza Parago to
Speaker 2: describe her experience with the illness. Parago was living in Lombardi, Italy,
Speaker 2: which was hit really badly by COVID, if you remember,
Speaker 2: and she has since done a ton of incredible work
Speaker 2: on long COVID, like one of her papers by Callard
Speaker 2: and Parago titled how and Why Patients made long COVID.
Speaker 2: I used a lot to put this timeline together. Do
Speaker 2: you want to hear the first hashtag long COVID tweet? Yes?
Speaker 2: I do, okay quote the hashtag long COVID. Hashtag COVID
Speaker 2: nineteen is starting to be addressed on major newspapers in Italy. Two.
Speaker 2: An estimated twenty percent of tested patients remain COVID positive
Speaker 2: for at least forty days. Professor from tor Gatta University
Speaker 2: of Rome notes, there is a lot we don't know
Speaker 2: about this virus.
Speaker 3: End quote, so that's much longer than I feel like
Speaker 3: I think it tweet is.
Speaker 2: I know it might have been. I don't know if
Speaker 2: it was a thread or not, but it certainly it
Speaker 2: certainly was there. And it's kind of cool to like
Speaker 2: go back and you like I clicked on this like
Speaker 2: in you know, as a citation for the paper, and
Speaker 2: I was like, yeah, it's there. But also I think
Speaker 2: it's it's really interesting in the context of this because
Speaker 2: it kind of talks about long COVID or like it
Speaker 2: references long COVID as though it already is a hashtager
Speaker 2: already as a concept that's widely known, and so by
Speaker 2: may there is sort of this at least awareness in
Speaker 2: some circles that this is a thing that is actually happening.
Speaker 3: Yeah.
Speaker 2: And throughout June and July, the term long COVID began
Speaker 2: to catch on and it was used in news articles
Speaker 2: or clips, but with quotes around it, right, like so
Speaker 2: somebody would say the you know, people who are reporting
Speaker 2: symptoms of illness long after calling it quote unquote long covid, Yeah,
Speaker 2: which is kind of it's it's interesting, yeah, And a
Speaker 2: lot of these pieces addressed the lack of knowledge about
Speaker 2: long COVID, or the lack of knowledge about COVID nineteen,
Speaker 2: or the just these pieces were about, like the emergence
Speaker 2: of this term on social media and the role of
Speaker 2: social media in connecting people who were experiencing symptoms, you know,
Speaker 2: long after what was expected. But as the weeks went on,
Speaker 2: you can actually witness the term long COVID gain legitimacy
Speaker 2: in these news articles. You know, it started to appear
Speaker 2: without the quotes around it, and the articles were asking
Speaker 2: questions more along the lines of what could be causing
Speaker 2: this long COVID rather than could COVID cause these long
Speaker 2: term effects? And the language in these articles no longer
Speaker 2: really hedged about whether or not someone's symptoms following infection
Speaker 2: from COVID were linked to the infection or if something
Speaker 2: else was going on, it was simply taken as fact
Speaker 2: that some people did not recover from COVID on the
Speaker 2: expected timeline, and that this long COVID could be debilitating
Speaker 2: with significant effects to mental health, physical health, their personal life,
Speaker 2: and many other aspects of life. This was a huge development,
Speaker 2: honestly to see this happen within a matter of months,
Speaker 2: and it was made by the endless work of the
Speaker 2: many patient led groups that advocated for recognition and to
Speaker 2: be part of the conversation. But recognition and acknowledgment in
Speaker 2: popular media alone wasn't enough. Like we're talking about a
Speaker 2: medical condition that can severely impact someone's life. For there
Speaker 2: to be hope of treatment for long COVID, for there
Speaker 2: to be diagnostic criteria that would enable someone to exercise
Speaker 2: their workers right and benefits, we needed to have an
Speaker 2: understanding of what was actually going on physiologically, and for
Speaker 2: that we needed medicine and biomedical research. Healthcare workers and
Speaker 2: researchers knew that some people were experiencing symptoms long after
Speaker 2: they should have recovered. They were seeing it and in fact,
Speaker 2: since healthcare workers on the frontlines of the pandemic had
Speaker 2: some of the highest rates of infection with COVID nineteen,
Speaker 2: especially in those early months, these healthcare workers had some
Speaker 2: of the highest rates of long COVID. And side note here,
Speaker 2: I think that this is an interesting contrast to the
Speaker 2: myologic and cephalomyelitis chronic fatigue story because, as I'll talk about,
Speaker 2: it took a lot longer to that took a lot
Speaker 2: longer to gain legitimacy as an actual condition that could
Speaker 2: affect anyone rather than just like pesky board women lingering
Speaker 2: and wanting attention was sort of like the stereotype. And
Speaker 2: having such a high rate of healthcare workers added weight
Speaker 2: to the early argument that COVID, that long COVID was
Speaker 2: a real thing. And I think that this says a
Speaker 2: lot about biases in medicine and society more generally, and
Speaker 2: also bias in terms of like when subjective symptoms are
Speaker 2: more likely to be chalked up to personality or gender
Speaker 2: rather than taken seriously.
Speaker 3: Yeah, especially that some of the really really early like
Speaker 3: records or not records, but like people talking about their
Speaker 3: symptoms were men and researchers or infectious disease physicians, like,
Speaker 3: it totally makes sense that it adds weight, but it's
Speaker 3: also yeah, next week's episode is going to be a
Speaker 3: lot huh.
Speaker 2: I mean because it's not just I think a lot
Speaker 2: of people have said, well, it's it's how many people
Speaker 2: experience long COVID, Like, we had this illness that affected
Speaker 2: you know, how what percentage of the globe at this
Speaker 2: point has been infected with starscobe to at least once, right, Yeah,
Speaker 2: and so that the rates of long COVID were so
Speaker 2: much higher than any sort of post viral syndrome than
Speaker 2: we've probably ever seen. Right, But it's not just a number.
Speaker 3: Just yeah, it's not just that, like, yes, that plays
Speaker 3: into it, but it's not just that that's.
Speaker 2: Yeah, and it's such I think that there are going
Speaker 2: to be so many more opportunities for like compare contrast,
Speaker 2: like ooh, that's that's not a good look for science
Speaker 2: and medicine and society. Not great. But anyway, I'm sure
Speaker 2: we'll get into that next week a lot. Yeah, But
Speaker 2: I also don't want to misrepresent long COVID as a
Speaker 2: thing that went from you know, hashtag one month to
Speaker 2: the next month being one of the first if not
Speaker 2: the first patient creed diseases and totally accepted by the
Speaker 2: medical community as well as society at large, without being
Speaker 2: challenged or anyone being disbelieved. Because that's not the case.
Speaker 3: That's not what happened, Cinderella.
Speaker 2: No, it is not. It is, unfortunately not. Long COVID
Speaker 2: as a clinical concept faced many challenges and dismissals, and
Speaker 2: individuals with long COVID also experienced being ignored or disbelieved.
Speaker 2: But these things happened and continued to happen in different ways,
Speaker 2: and I think it's important to talk about those differences
Speaker 2: because I think it can highlight the ways that science
Speaker 2: and medicine handle uncertainty, and how that uncertainty can be communicated,
Speaker 2: often at the detriment of both trust and science and
Speaker 2: empathy and support for patients. And so this is sort
Speaker 2: of like I really struggled with how to put this together,
Speaker 2: and I hope this is coming across, so please stop
Speaker 2: me if you have questions, But like I wanted to
Speaker 2: talk about how long COVID as a concept has faced
Speaker 2: dismissal or challenges, and then also how people with long
Speaker 2: COVID experience on an individual level challenges and dismissal. So
Speaker 2: it and I think it really kind of relates in
Speaker 2: many ways to research on one end of things, like
Speaker 2: science and research on one end of things, and then
Speaker 2: medicine and healthcare, like the approach of healthcare workers on
Speaker 2: the other side of things. That makes sense that framing,
Speaker 2: we just get it. I'll just start. So let's start
Speaker 2: first with the clinical concept of long COVID and how
Speaker 2: science deals with uncertainty. Things take a long time with science,
Speaker 2: longer than most of us probably think. If we remember
Speaker 2: in our tonsils episode, how it took decades for research
Speaker 2: about tonsil ectomies to make its way into the clinic
Speaker 2: and then into general knowledge. That wasn't a fluke. It
Speaker 2: takes years for a scientific concept or finding to gain
Speaker 2: acceptance within a specific field, years of data collection, analysis,
Speaker 2: publication of perioview journals, replication of studies, and so on.
Speaker 2: And this time lag is not because there isn't urgency
Speaker 2: in science. There most definitely is, especially with topics that
Speaker 2: deal with things like health. This deliberate and rigorous approach
Speaker 2: to establishing scientific knowledge is necessary to make sure that
Speaker 2: the concepts or medications or practices that are being studied
Speaker 2: are grounded in reality that we have enough information to
Speaker 2: say this seems to be what's happening. Biomedical science could
Speaker 2: be described as cautious, but that caution is for a
Speaker 2: very good reason. The stakes are high, and researchers need
Speaker 2: to make sure that what they uncover could be applied
Speaker 2: to human health to do good rather than harm. But
Speaker 2: I think that this time lag can be frustrating at times,
Speaker 2: like when you read a headline about a possible new
Speaker 2: revolutionary treatment for Alzheimer's disease and you think, great, maybe
Speaker 2: your uncle who was just diagnosed can get this treatment
Speaker 2: right away and within the next few months, and wouldn't
Speaker 2: that be great? But then in the article you read
Speaker 2: that it's just preliminary results from a pilot study in mice,
Speaker 2: and that it would probably take ten plus years and
Speaker 2: continued experimental success for the drug to even go up
Speaker 2: for approval, And then at what point does it go
Speaker 2: for approval? And then would he even be able to
Speaker 2: pay for it in the end? You know, it's like
Speaker 2: all of these different things, Or like when the world
Speaker 2: is grappling with a new and potentially deadly respiratory virus
Speaker 2: and no one seems to know whether to disinfect your
Speaker 2: groceries or male or how long someone's infectious, or what
Speaker 2: social distancing indoors versus outdoors should look like. It's frustrating
Speaker 2: when science doesn't have all of the answers because we
Speaker 2: expect them to. And I think that those expectations for
Speaker 2: science and scientists have been created in part by how
Speaker 2: the popular media talks about science and reports on scientific findings.
Speaker 2: Nuance and uncertainty and context often disappears to make room
Speaker 2: for brevity or just a good story. In a scientific article.
Speaker 2: The authors may say this is a total made up example.
Speaker 2: These findings suggest that lead contamination of drinking water was
Speaker 2: prevalent at times in a few regions of ancient Rome,
Speaker 2: and the corresponding news piece about it says fall of
Speaker 2: Rome finally solved lead poisoning to blame. It's like, Okay,
Speaker 2: that's catchy, I understand, but like, that's not what they're saying.
Speaker 2: Uncertainty is a necessary part of science, but it doesn't
Speaker 2: make for a catchy story, and it's hard to admit uncertainty.
Speaker 2: It's not just about the popular media framing science as
Speaker 2: having all the answers. It also has to do with
Speaker 2: many scientists not feeling comfortable admitting what they don't know,
Speaker 2: especially if new information contradicts their existing knowledge. What does
Speaker 2: all of this has to do with long COVIDHA everything.
Speaker 2: I think that when researchers or quote unquote science as
Speaker 2: a field finally recognized that some people experienced debilitating symptoms
Speaker 2: long after the accepted two course of illness, it felt like, finally,
Speaker 2: it took you long enough to see that this was
Speaker 2: happening to acknowledge it, which I totally understand. But at
Speaker 2: the same time, I think we need to ask how
Speaker 2: much of that that time, that time lag, or that
Speaker 2: timing was due to science being science, you know, cautious
Speaker 2: grounding observations and data, coming up with a consensus for
Speaker 2: diagnostic criteria so as tomize confusion, you know, having agreement
Speaker 2: about terms. And how much of it was science and
Speaker 2: scientists being reluctant to acknowledge contradictory data, or just having
Speaker 2: a tendency to label people's experiences as outliers, or being
Speaker 2: unwilling to say, maybe we don't know as much about
Speaker 2: this as we thought, maybe we were wrong. Long COVID
Speaker 2: didn't fit with the narrative of COVID as a respiratory
Speaker 2: disease where recovery, unless severe case was rapid. It's a
Speaker 2: weird paradox of science where we can look back on
Speaker 2: centuries of progress, progress made by new information being integrated
Speaker 2: into existing information, and yet we seem to have this
Speaker 2: instinct to immediately reject contradictory information without looking at it
Speaker 2: more closely, so like we can see how far we've
Speaker 2: come without imagining that we might still have further to go.
Speaker 2: Oh yeah, I don't have the answer for how much
Speaker 2: it was science being cautious versus science being dismissive about
Speaker 2: the concept of long COVID. Regardless, this period of waiting
Speaker 2: for long COVID to be quote unquote scientifically legitimate was
Speaker 2: very much felt by people with long COVID who needed
Speaker 2: a diagnosis to exercise workers' rights or disability rights, to
Speaker 2: have an answer for what was happening, even just to learn,
Speaker 2: even just to say what I'm experiencing is real. And
Speaker 2: while this battle for the recognition of long COVID as
Speaker 2: a concept was happening on a collective scale, people with
Speaker 2: long COVID were also fighting their own fight on a
Speaker 2: very personal one, which brings me to some of the
Speaker 2: ways that medicine deals with uncertainty. Right off the bat,
Speaker 2: I want to make clear that I'm not saying all
Speaker 2: healthcare workers or providers are dismissive or belittling, or that
Speaker 2: they all let their biases come through in their patient interactions.
Speaker 2: I don't even want to talk about like I don't know,
Speaker 2: maybe I will, but like I really what I want
Speaker 2: to do is approach this from the patient perspective, like
Speaker 2: what people with long COVID have experienced when trying to
Speaker 2: seek health care, and this comes from data papers as
Speaker 2: well as online forums where people share their experiences, and
Speaker 2: there are incredible forums out there. Like, honestly, I really
Speaker 2: think that it's worth just like heading to the subreddit
Speaker 2: about long COVID and what people are posting their experience
Speaker 2: is the support that they're getting from this community sort
Speaker 2: of the answers that they're getting answered, the questions that
Speaker 2: they're getting answered, at least in part or at least
Speaker 2: just like acknowledgment. I think it's really I don't know,
Speaker 2: it's really amazing to see. And yes, maybe there will
Speaker 2: be some like direct calling out of clinicians because frankly
Speaker 2: it warrants it sometimes. Yeah, but since the COVID pandemic began,
Speaker 2: People with lingering symptoms have faced many challenges with getting
Speaker 2: the care and consideration they deserve medical professionals. In the
Speaker 2: earlier part of the pandemic, tests were extremely scarce and
Speaker 2: at least here in the US, and they were restricted
Speaker 2: to those who had severe disease and if you were sick,
Speaker 2: but it was like mild quote unquote mild, it was
Speaker 2: just stay home, like stay home, isolate, get better. And
Speaker 2: so when they didn't fully recover, and then they went
Speaker 2: to a doctor to say, like, what's going on, I'm
Speaker 2: still experiencing symptoms, the doctor may have doubted that what
Speaker 2: they actually had was COVID to begin with, like, well
Speaker 2: did you ever test positive?
Speaker 3: No?
Speaker 2: I was told to stay home. There were no tests. Oh,
Speaker 2: well are you you might not have had COVID? Like
Speaker 2: what why? Maybe I did? Isn't that a possibility? And
Speaker 2: so then you know, it would kind of lead to
Speaker 2: these questioning of like, well then if it's not, if
Speaker 2: it's not COVID, what caused these symptoms? Are they even real?
Speaker 2: But even when testing was widely available or when long
Speaker 2: COVID gained recognition, people with long COVID were often met
Speaker 2: with dismissal or disbelief. Are you sure you didn't just
Speaker 2: like get a bad night's sleep. Maybe it's just stress.
Speaker 2: We don't have any evidence for what you're experiencing, so
Speaker 2: it must not exist. One paper I read from twenty
Speaker 2: twenty two by out at All reported that seventy nine
Speaker 2: percent of people with long COVID that were surveyed described
Speaker 2: negative interactions with medical professionals, including dismissal, prolonged diagnostic journeys,
Speaker 2: and lack of treatment. I want to read you a
Speaker 2: quote from a survey participant from that paper. Quote. Because
Speaker 2: I was sick so early, I was unable to obtain
Speaker 2: positive tests, but all of my acute symptoms were COVID
Speaker 2: like many doctors nevertheless didn't believe I had COVID By
Speaker 2: the time the antibody tests were available. It was several
Speaker 2: months after I was sick, and that test was also negative.
Speaker 2: But I also learned these tests aren't infallible. I never
Speaker 2: had these long term symptoms before, and some doctors frame
Speaker 2: it as you always had this and never realized end quote.
Speaker 2: Isn't that like just AH have the words? Yeah? And
Speaker 2: this is that is just one story from one survey
Speaker 2: but I do think it is representative of this long
Speaker 2: established pattern of medicine not dealing with uncertainty very well.
Speaker 2: Like scientists, physicians are tested throughout all of their training
Speaker 2: and careers expected to know the right answer, have the
Speaker 2: right answer. You're going to score poorly. You're not going
Speaker 2: to perform well on this test. You're going to be
Speaker 2: like you're attending or whatever. I don't know. The terminology
Speaker 2: is going to be like, Wow, that's better, go home
Speaker 2: and read some textbooks or whatever.
Speaker 3: Exactly what they're going to say, is there really yeah,
Speaker 3: one hundred percent, you should go read up on this. Yeah.
Speaker 2: And it's like and I understand, like there is of
Speaker 2: course a place for testing and for memorization and for knowledge,
Speaker 2: but I think that it doesn't necessarily leave a lot
Speaker 2: of room for uncertainty being a feeling that is comfortable
Speaker 2: or like this is okay, that I don't know this
Speaker 2: because I can try to find.
Speaker 3: Out it's it's also I think, and I'll get into
Speaker 3: this more, and you might be about to get into
Speaker 3: this too, but I just have so many feelings already,
Speaker 3: Like we also, and you've talked we've talked about this
Speaker 3: on the podcast in other episodes too, like medicine's reliance
Speaker 3: on things that we can test and measure. Yes, and
Speaker 3: so when all of the things that we can test
Speaker 3: and measure are coming back as normal, it is very
Speaker 3: hard for medicine to then be like, well, what you
Speaker 3: have is real, but I have nothing to show for it,
Speaker 3: even though that is the truth of the matter. And
Speaker 3: so then what often ends up happening is well, everything
Speaker 3: is normal, so you must be fine when that is
Speaker 3: not what is the truth, and so it's it's really
Speaker 3: it's a really tough situation.
Speaker 2: Yeah. I think like the way the way that I
Speaker 2: wrote it here, the way that I was like framing
Speaker 2: it was to myself, was when there's uncertainty in medicine
Speaker 2: and you don't know where that uncertainty is coming from,
Speaker 2: you shift it to the patient.
Speaker 3: Yeah. Ah, yeah, that's so interesting, Arin.
Speaker 2: Yeah, and I think that that's really harmful, can be
Speaker 2: very very harmful. Then it's like, well, you may not
Speaker 2: remember this, but you have always felt this way, or
Speaker 2: those symptoms are just in your head, you're not actually
Speaker 2: experiencing them. This is just a one off. And these
Speaker 2: responses tend to be gendered very much. So also with
Speaker 2: like racial along racial and class lines. And I'm sure
Speaker 2: we'll get into that more in our chronic fatigue episode
Speaker 2: next week. Definitely, And if a patient challenges a healthcare provider,
Speaker 2: especially when that patient has more expertise on a subject,
Speaker 2: such as someone with long COVID who's been reading through
Speaker 2: forums for months, this is like there's been actual a
Speaker 2: lot of studies, a lot of work done on this
Speaker 2: with like patient expertise, and how that can influence treatment
Speaker 2: by physicians. Sometimes healthcare workers can act, can react defensively
Speaker 2: or indignantly because it disrupts this power hierarchy where it's
Speaker 2: like I'm the expert, how dare you question me? It's
Speaker 2: not all that, it's not always the case. Like sometimes
Speaker 2: that can lead to a collaboration between patient and physician,
Speaker 2: and that's wonderful, like that's the way it should be.
Speaker 2: But this is something that can lead to like more
Speaker 2: negative interactions, I guess, and that can lead to barriers
Speaker 2: for care. And there's a citation for that by snow
Speaker 2: at All from twenty thirteen. I think it's really important
Speaker 2: to remember that going to the doctor is an exceptionally
Speaker 2: vulnerable experience. Oftentimes maybe you're getting undressed, maybe you just
Speaker 2: have a health concern that you want to talk through.
Speaker 2: You're putting your trust in this person to help you,
Speaker 2: and this person, you know, you assume that they have
Speaker 2: these years of training. Of course they do, and that
Speaker 2: presumably they went into medicine at least in part to
Speaker 2: help people. And then they tell you while you're making
Speaker 2: it all up, I don't believe you. That breach of trust,
Speaker 2: especially when you're in that vulnerable position, it can be
Speaker 2: so immense. Fortunately, not all physicians are dismissive. Some do
Speaker 2: try to listen. Many do try to listen. Many do
Speaker 2: try to work with their patients to come to an
Speaker 2: answer together or at least figure out what questions to
Speaker 2: ask next. Even then, though, even if you have a
Speaker 2: wonderful healthcare provider who listens to you, who's empathetic, who
Speaker 2: is like, let's figure this out together, it doesn't mean
Speaker 2: that there aren't still challenges that people with long COVID
Speaker 2: face beyond. Just like the physical symptoms of like the fatigue,
Speaker 2: which can destroy a person, there's burnout from going to
Speaker 2: specialist after specialist, encountering new symptoms that you're like, what
Speaker 2: is happening now? Maybe this will help me and then
Speaker 2: you your doctor, and then they refer you to another specialist,
Speaker 2: and then they refer you and you're just like spending
Speaker 2: all of this money, all of this time, all of
Speaker 2: this hope for an answer that may not that you
Speaker 2: may never get a satisfactory answer. Yeah, and then there's
Speaker 2: like dismissal from friends or family or work, and then
Speaker 2: there's just, like I kind of said, like the exhaustion
Speaker 2: of hope, hope that things are getting better. Like maybe
Speaker 2: one day it's a good day and you're like, Okay,
Speaker 2: this is maybe maybe I'm I'm on the other side
Speaker 2: of things, and then the next day you're not, and
Speaker 2: it's just like that cycle of that Yeah, I don't know,
Speaker 2: I'm it seems incredibly exhausting and just like draining, because
Speaker 2: it's not just a physical it's not just societal or
Speaker 2: physician dismissal. It's just like everything about it, like will
Speaker 2: there be a drug, will there be a diagnosis? And
Speaker 2: these aspects are not unique to long COVID. They're also
Speaker 2: present with many other poorly understood chronic diseases. But one
Speaker 2: of the things that I think is so exceptional about
Speaker 2: long COVID is the enormous support and community groups that
Speaker 2: have sprung up since the early days of the pandemic,
Speaker 2: and these groups, I think really showed just how important
Speaker 2: shared experiences, how patient narratives are so crucial in understanding
Speaker 2: the full picture of a disease, how a disruption in
Speaker 2: the hierarchy of evidence can actually move our knowledge ahead
Speaker 2: faster than otherwise. So like when you know, people started
Speaker 2: to share their experiences on these online forums, that was
Speaker 2: actually used to kind of like fuel research much faster
Speaker 2: than it would be if it was just like people
Speaker 2: sifting through medical records or something like that. Having long
Speaker 2: COVID have a hashtag, that's amazing, Like that really helped
Speaker 2: kind of like move things along so much faster. And
Speaker 2: I really think that we cannot forget the origins of
Speaker 2: long COVID, in those who experienced it, who gave it
Speaker 2: a name, who demanded recognition and research, and who supported
Speaker 2: each other. And I feel like there are so many
Speaker 2: more lessons or whatever themes with the history of long
Speaker 2: COVID that I mentioned at the top already, but I
Speaker 2: just want to leave you with one more and it's
Speaker 2: one that's really I keep thinking about too, is that
Speaker 2: long COVID has really highlighted how desperately we need better
Speaker 2: metrics for morbidity. We don't currently have good baselines for
Speaker 2: what makes someone quote unquote healthy or what recovery looks like. Yeah,
Speaker 2: and maybe that's where listening to someone and believing them
Speaker 2: is so valuable. And with that, Aaron, I'd love for
Speaker 2: you to tell me what we know about long COVID
Speaker 2: as a disease. I didn't know how to end it.
Speaker 3: Oh my gosh, Aaron. Yeah, I have a lot of feelings.
Speaker 3: I'm going to try them bring them together. So we'll
Speaker 3: take a quick break and then we'll get into what
Speaker 3: we know and what we don't know about the biology
Speaker 3: underlying long COVID. So right off the bat, just putting
Speaker 3: it out there, the idea that the concept that you
Speaker 3: can get infected with a virus or a bacteria and
Speaker 3: kind of recover like no longer be infectious, and still
Speaker 3: be very sick or miserable for months or years after.
Speaker 3: This is not a new concept. This is not unique
Speaker 3: to COVID nineteen. This is not something new in the
Speaker 3: medical literature. Not only are there dozens of other pathogens
Speaker 3: that we know of already that cause a whole variety
Speaker 3: of like post infectious syndromes, some of which are very
Speaker 3: well recognized by the medical community, and in some cases
Speaker 3: like at least a little bit well characterized, like salmonella
Speaker 3: and reactive arthritis, for example, Like we know that reactive
Speaker 3: arthritis is a thing that can happen after salmonella infection.
Speaker 3: It's all over our textbooks. And some that are absolutely
Speaker 3: still not recognized or very controversial in the medical community
Speaker 3: looking at you lyme disease. But to anyone who had
Speaker 3: been paying attention, for example, back in two thousand and
Speaker 3: three SARS Part one, even the fact that this particular
Speaker 3: virus stars Covy two ended up causing a significant amount
Speaker 3: of long term morbidity shouldn't have been surprising, because SARS
Speaker 3: the first did the same thing. We'll get into it.
Speaker 3: What I know. I didn't know that either. I've learned
Speaker 3: a lot researching this episode.
Speaker 2: Arin SARS so first too, I mean rebranding, I think
Speaker 2: I think it's a go.
Speaker 3: You like it? So okay. The idea of like a
Speaker 3: post viral, post acute infectious syndrome, that is what it's
Speaker 3: often called pais It's not a new thing, and a
Speaker 3: lot of these have particular names the way that long
Speaker 3: COVID does post polio syndrome, post ebola syndrome, posting gay
Speaker 3: fatigue syndrome, Q fever syndrome. The list goes on. But
Speaker 3: one big question that I had going into this episode,
Speaker 3: like before I started researching it was something that you
Speaker 3: touched a little bit on already, Aerin, and that is
Speaker 3: that we're the numbers that we're seeing of long COVID,
Speaker 3: like the amount of human suffering from this. Is it
Speaker 3: a result of this particular virus or is it a
Speaker 3: result of the overwhelming scale of this pandemic or is
Speaker 3: it a little bit of both?
Speaker 2: Right? Like, are certain virus is more prone to cause
Speaker 2: post viral syndromes exactly?
Speaker 3: And so after doing this research, I really feel like
Speaker 3: it's both, which isn't surprising because I just feel like
Speaker 3: logically you would think, wow, that's probably both. It's not
Speaker 3: purely a numbers game, but the numbers absolutely play into
Speaker 3: how much information we've been able to get about long
Speaker 3: COVID and how much attention, Like you can't ignore when
Speaker 3: numbers are as big as they are. But it's also
Speaker 3: something about this virus and SARS round one really does
Speaker 3: back this up after the initial Stars pandemic. Some studies
Speaker 3: suggested that up to twenty seven percent of people who
Speaker 3: survived the initial STARS infection had lingering symptoms up to
Speaker 3: a year or.
Speaker 2: More later, twenty seven percent.
Speaker 3: In some studies. So that alone, knowing that before we
Speaker 3: even knew about hashtag long COVID, should have been an
Speaker 3: indication that we could expect some degree of post acute
Speaker 3: infectious syndrome risk from SARS COVID two. And there's also
Speaker 3: been studies since then that have tried to compare, for example,
Speaker 3: influenza and COVID in terms of what the long term
Speaker 3: morbidity and mortality are and in general, outcomes are far
Speaker 3: worse both in the acute and the long term with
Speaker 3: COVID compared to influenza. How do WEN focus for this episode?
Speaker 3: Which is difficult because Aaron, there's a lot and also
Speaker 3: like do we know anything? Yes, we do. So the
Speaker 3: way that I'm going to try and focus this is
Speaker 3: I'm going to try and focus on the various hypotheses
Speaker 3: that we have so far as to what is going
Speaker 3: on in our bodies in someone who's living with long COVID,
Speaker 3: and then kind of within those different hypotheses will be
Speaker 3: able to kind of understand some of the symptoms that
Speaker 3: are associated with it. But first, let's back all the
Speaker 3: way up to like, how do we even define long COVID?
Speaker 3: Like what is the definition? It depends who you ask,
Speaker 3: I was going.
Speaker 2: To say, and how much has that changed over the
Speaker 2: last few years.
Speaker 3: Oh gosh, I don't even know aerin that's the history section. Whoop,
Speaker 3: but no, but I mean even today, Like, it really
Speaker 3: depends on who you ask. In general, if you look
Speaker 3: on for example, like the CDC website, which is one
Speaker 3: that I go to a lot for general definitions. Most
Speaker 3: of the time, long COVID is considered symptoms that either
Speaker 3: persist or in some cases develop after a Sar's COVID
Speaker 3: two infection and last for at least four weeks. That
Speaker 3: is the kind of simplest definition. The timeframe that four weeks.
Speaker 3: It really is variable depending on what study you're looking at.
Speaker 3: So some studies when they're looking at long COVID versus
Speaker 3: not long COVID, they're using a very different timeframe twelve
Speaker 3: weeks or ninety days or even six months or whatever
Speaker 3: their timeframe is. But at least per the CDC, four
Speaker 3: weeks is kind of the minimum for it to be
Speaker 3: considered part of the spectrum of disease that is long covid.
Speaker 3: But what are these symptoms again, It depends because it's
Speaker 3: almost anything and everything that can affect literally every organ
Speaker 3: in our bodies. Over two hundred symptoms have been reported
Speaker 3: to be associated with long COVID, so it's it is
Speaker 3: a very huge spectrum of disease, and it's so wide
Speaker 3: that in reality this is likely not all one thing, right,
Speaker 3: Like the bottom line is, this isn't one thing. Long
Speaker 3: covid is an umbrella. And some of the literature has
Speaker 3: started to kind of try and parse this out a
Speaker 3: little bit, and I don't know how like universally this
Speaker 3: is accepted yet, but some of what I read was
Speaker 3: suggesting that maybe there's like four different syndromes if you
Speaker 3: classify them, like a pulmonary version of long covid, a
Speaker 3: more cardiovascular dominant long covid, a neuropsychiatric long covid, and
Speaker 3: then other which is like great everything else, active gi kidneys,
Speaker 3: all the rest. Again, I don't know if this particular
Speaker 3: formatting will hold up with time, but it's very likely
Speaker 3: that there are multiple different syndromes happening that are now
Speaker 3: under this covid umbrella long covid umbrella, and there is
Speaker 3: overlap between all of these different things, and someday we'll
Speaker 3: probably have a little bit more separation between what's going
Speaker 3: on and what the underlying path of physiology is that
Speaker 3: drives these So let's get into that. Let's get in
Speaker 3: right now to the hypotheses that we have as to
Speaker 3: what is driving long COVID. And to do this, I'm
Speaker 3: going to separate into what the kind of biggest hypotheses
Speaker 3: are and then some of them I'll dig really deep
Speaker 3: on because we have more evidence. Okay, So the major
Speaker 3: groups of hypotheses include viral persistence, autoimmunity, reactivation of latent viruses,
Speaker 3: and the biggest umbrella turn is immune dysregulation. And within
Speaker 3: that kind of category of immune dysregulation is also like
Speaker 3: chronic damage induced by inflammation. Okay, Okay, So I'm going
Speaker 3: to go into each of these hypotheses and within that
Speaker 3: we'll explore some of the symptoms that are strongly associated
Speaker 3: with long COVID and what we think might be driving
Speaker 3: some of those symptoms. Cool.
Speaker 2: Yeah, Okay, So.
Speaker 3: The first hypothesis is persistence of virus, which is kind
Speaker 3: of exactly what it sounds like, like virus stars CoV
Speaker 3: two virus, or really like viral particles remaining in our
Speaker 3: cells or in our circulation. A lot of studies looking
Speaker 3: at people with long COVID have found viral proteins or
Speaker 3: viral rna in various cells and tissues choose for months
Speaker 3: after an infection, including some people who do test positive
Speaker 3: for a very long time following an infection. One of
Speaker 3: the tissues that seems to have a really good potential
Speaker 3: as a reservoir of SARS covy to virus is our
Speaker 3: gastrointestinal tract, and some studies have found in people with
Speaker 3: long COVID specifically persisting circulating spike protein, which people might
Speaker 3: remember is the protein that is targeted by the majority
Speaker 3: of our vaccines for COVID. It's one of the proteins
Speaker 3: that SARS uses to enter our cells, and so it's
Speaker 3: one that we make neutralizing antibodies to in order to
Speaker 3: prevent infection or prevent illness from infection. Now, this idea
Speaker 3: of viral persistence does not necessarily mean that people remain infectious.
Speaker 3: They might not have lie virus persisting, but this persistent
Speaker 3: viral RNA or proteins can do a couple of different things. One,
Speaker 3: they could be triggering persistent immune response and inflammation just
Speaker 3: by the presence of those viral proteins in our bodies. Two,
Speaker 3: the persistent viral proteins themselves and especially the spike protein,
Speaker 3: may cause tissue damage itself. There is some evidence that
Speaker 3: the spike protein might cause tissue damage directly and then
Speaker 3: lead to chronic inflammation. And finally, the persistence of this virus,
Speaker 3: especially if it is whole virus in say our GI
Speaker 3: tracked just kind of hiding dormant, it could potentially be reactivated,
Speaker 3: especially if people maybe had a lower anti body tighter
Speaker 3: to begin with. But we'll get there down the line.
Speaker 2: Yeah, Okay, so when you say there is potentially viral
Speaker 2: protein or rna floating around, yeah, and you kind of
Speaker 2: you kind of explained it a little bit in your
Speaker 2: third and final or like and finally, yeah, how does
Speaker 2: that stay and not get neutralized by the immune system?
Speaker 3: Yeah, Aaron, is the grand question is that, like, if.
Speaker 2: We knew that the idea, did I just say this
Speaker 2: is the hypothesis? Okay, No, that's it.
Speaker 3: I mean, that's exactly that is the right question. How
Speaker 3: does this persist? Why does this persist? Yeah, so the
Speaker 3: thought is that maybe there are reservoirs where is there
Speaker 3: virus like actual live virus. I mean, yeah, our virus
Speaker 3: is living. That's a separate topic, but the virus viral whatever. Yeah,
Speaker 3: Viral reservoirs, insay, are gut cells that then are just
Speaker 3: sort of kind of able to provide like sitting there
Speaker 3: as a reservoir for this spike protein or this RNA
Speaker 3: to be every once in a while floating around in
Speaker 3: our bodies and other tissues.
Speaker 2: I see. Okay, so the viruses are not doing the
Speaker 2: full on like let's burst all the cells forged infection,
Speaker 2: just sort of like let's pop out a few spikes
Speaker 2: proteins here and there. Oh, this virus leaked some RNA.
Speaker 3: Maybe maybe aarin maybe. Okay, that's the thought. So that's
Speaker 3: one hypothesis, some evidence for it. One hypothesis. The second
Speaker 3: hypothesis is also very interesting and similar, and that is
Speaker 3: latent virus reactivation. Okay, So several studies and I think
Speaker 3: there's kind of a growing body of evidence of reactivation
Speaker 3: of other viruses that we already know lay latent in ourselves,
Speaker 3: like EBV, epstein bar virus or various human herpes viruses,
Speaker 3: especially HHV six which is the causetive agent of rosiola
Speaker 3: or sixth disease throw back to parvo. So these viruses
Speaker 3: have been shown to be reactivated in some people with
Speaker 3: long COVID. Now, this is also something that we see
Speaker 3: in myalgic incephalomyelitis or chronic fatigue syndrome.
Speaker 2: Does that explain the whole constellation of symptoms that we
Speaker 2: see and like this.
Speaker 3: Not even a little bit, We're not even close?
Speaker 2: Got it? Got it?
Speaker 3: There's also and this is I think related, So it
Speaker 3: wasn't one of the main hypotheses that I mentioned at
Speaker 3: the top, but it's kind of related to this idea
Speaker 3: of the reactivation of viruses or of the persistence of viruses.
Speaker 3: Is that one thing that we don't understand but its
Speaker 3: thought might play a role is the effect of COVID
Speaker 3: nineteen on our microbiome and our virome, especially as it
Speaker 3: relates to things like GI symptoms of long COVID, of
Speaker 3: which there are many, like persistent abdominal pain, persistent nausea,
Speaker 3: even constipation or chronic diarrhea. A lot of different GI
Speaker 3: symptoms can go along with long covid, there is evidence
Speaker 3: that SARS CoV two has effects on our microbiome and
Speaker 3: likely on our virum as well, especially if it's reactivating
Speaker 3: viruses that are hanging out. But again, in that case,
Speaker 3: we don't have a lot of detail on like what
Speaker 3: are those downstream effects? Why is the only happiness some
Speaker 3: people and not others? So, but the microbiome likely maybe
Speaker 3: plays a role in all of this as well.
Speaker 2: I'm going to ask a question that you don't know
Speaker 2: the answer to.
Speaker 3: Okay, can't wait?
Speaker 2: Have there been fecal transplant studies on people with long
Speaker 2: covid and treating GI symptoms?
Speaker 3: Such a great question, let's look it up. I have
Speaker 3: no idea, wonderful. My guess would be not yet, but
Speaker 3: who knows.
Speaker 2: If you're like in the works, yeah as we speak, yeah.
Speaker 3: Yeah, okay. So those are the first kind of big hypotheses.
Speaker 3: The next one is autoimmune stuff. No, yeah, right, okay,
Speaker 3: slightly larger.
Speaker 2: So totally simple, totally easy.
Speaker 3: To explain in five minutes. Okay, So autoimmunity we've talked
Speaker 3: about on this podcast before because we've covered a number
Speaker 3: of other autoimmune disorders, but the concept of autoimmunity is
Speaker 3: that we are making antibodies against our own cells. These
Speaker 3: are called auto antibodies, fighting our own cells instead of
Speaker 3: fighting off an infection that is affecting us. There is
Speaker 3: evidence in acute COVID infections that people do produce some
Speaker 3: auto antibodies. So we produce some antibodies that target proteins
Speaker 3: not of the virus, but that happen to affect cells
Speaker 3: of our own. So it's possible that in a subset
Speaker 3: of those people who are developing these autoantibodies during the
Speaker 3: acute phase of COVID, these persist and cause some of
Speaker 3: the symptoms of lung covid. But overall, so far there
Speaker 3: is not as much evidence for this at this point,
Speaker 3: and some epidemiological evidence at least kind of It makes
Speaker 3: sense why the idea of an autoimmune reaction is like appealing,
Speaker 3: I guess if that is the right term. Sure, because
Speaker 3: one thing to know about long covid and post acute
Speaker 3: infectious syndromes overall, like of a lot of the post
Speaker 3: acute infectious syndromes that we know of, they often occur
Speaker 3: at significantly higher rates in people assigned female at birth,
Speaker 3: And that is also true of the vast majority of
Speaker 3: autoimmune disorders as well. We still don't know why that is,
Speaker 3: and we talked in our MS episode about this. We
Speaker 3: talked in our LUPUS episode about some hypotheses as to
Speaker 3: why that is. We don't know if these are genetic links,
Speaker 3: are they hormonal links, We don't know.
Speaker 2: There's some stuff in the news about mice and the
Speaker 2: X chromosome. M check it out. Yeah, but.
Speaker 3: It's true for long COVID as well. People assigned female
Speaker 3: at birth have significantly higher rates of long COVID without
Speaker 3: a doubt. And so the idea that maybe there is
Speaker 3: an autoimmune component to this, it's a valid idea. We
Speaker 3: just don't have that much evidence for it at this point. Okay,
Speaker 3: So with that, let's get into the kind of, at
Speaker 3: least in my reading and in the way that my
Speaker 3: brain conceptualizes it, the most overarching I think of the
Speaker 3: hypotheses to try and explain long COVID, and that is
Speaker 3: this idea of immune dysregulation. So if we go back
Speaker 3: from long COVID and think for a little bit about
Speaker 3: an acute infection with COVID, like when you first get infected,
Speaker 3: one thing that we know for sure over the course
Speaker 3: of these last four years that we have learned is that,
Speaker 3: especially in the cases of severe disease, but even in
Speaker 3: mild cases, a lot of the damage and the symptoms
Speaker 3: of an acute infection are driven by inflammation. They're driven
Speaker 3: by our inflammatory response to this pathogen, and inflammation is
Speaker 3: our immune system reacting to try and fight off this virus.
Speaker 3: So covid, like sepsis or like any severe overwhelming infection,
Speaker 3: can in the acute phase when you first get infected,
Speaker 3: cause an overwhelming activation of our immune system and overwhelming inflammation.
Speaker 3: Then when we look at long covid, one of the
Speaker 3: things that we see in people with long COVID in
Speaker 3: a lot of studies is higher levels of inflammatory markers
Speaker 3: long after this acute infection is over. But it's not
Speaker 3: just like, oh, it's all inflammatory and it's just high inflammation.
Speaker 3: It's not just that it's more complicated. It's a disregulated,
Speaker 3: persistent immune response. Because what we see, and this is yes,
Speaker 3: I'm sorry, but it's getting a little nitty gritty in anology.
Speaker 3: But what we see in studies that have looked at
Speaker 3: people with long COVID is we can see increases in
Speaker 3: some markers of inflammation. Okay, but we also can see
Speaker 3: decreases in the either function or the numbers of some
Speaker 3: of our immune cells.
Speaker 2: Uh okay, what gets the inflammatory markers get upregulated? What
Speaker 2: gets down regulated?
Speaker 3: So in some cases the numbers of things like our
Speaker 3: CD four T cells and our CD eight T cells decrease.
Speaker 3: And this is really interesting, we see an increase in
Speaker 3: what are called exhausted T cells. An exhausted T cell
Speaker 3: is this concept that the T cells are responding to
Speaker 3: an infection that's been really difficult to clear, Like they
Speaker 3: tried to clear it and they couldn't. So then some
Speaker 3: of these activated T cells, like the ones that have
Speaker 3: already been kind of targeted to a specific pathogen, they
Speaker 3: just kind of backtrack a little bit and they stop
Speaker 3: producing as much inflammatory stuff, and like they stop doing
Speaker 3: their anti pathogenic functions a little bit and kind of
Speaker 3: lean into a bit more of tolerance rather than trying
Speaker 3: to eliminate a pathogen.
Speaker 2: Sis is blowing my mind.
Speaker 3: I know, it's really interesting. We probably should, like I
Speaker 3: don't know if we should do a deep dive on it,
Speaker 3: but I have so many papers with so much detail
Speaker 3: on this. So it's a dysregulation and an overall kind
Speaker 3: of pro inflammatory state.
Speaker 2: Which is not good, not good.
Speaker 3: But what I think is interesting is that if we
Speaker 3: focus on this immune dysregulation and this like persistence of
Speaker 3: inflammation in general, we can then look a little bit
Speaker 3: more specifically at some of the symptoms or like underlying
Speaker 3: syndromes that we see associated with long covid in some cases.
Speaker 3: So let's dig like even deeper a little bit, and
Speaker 3: I swear it's not more like cytokines. So another thing
Speaker 3: that we see a lot with both an acute infection
Speaker 3: but also might be underpinning some of long covid is
Speaker 3: microvascular issues and damage to our vasculature, right right, So
Speaker 3: we know that while Star's covy two is predominantly a
Speaker 3: respiratory virus, even in the acute phase, it is affecting
Speaker 3: all of our organ systems, like pretty much all of them,
Speaker 3: and one of the organ systems that it really can
Speaker 3: cause damage to is our cardiovascular system. And we see
Speaker 3: this in acute infection as well. People with COVID, especially
Speaker 3: with severe COVID, are at significantly higher risk of blood
Speaker 3: clots and bleeding events. And so one thing that has
Speaker 3: been shown is that damage to the endothelium, the lining
Speaker 3: of our blood vessels is happening as a part of
Speaker 3: covid infection. Is this then also happening as a part
Speaker 3: of long covid? Perhaps we think that a lot of
Speaker 3: this damage is primarily from inflammation and our immune system's
Speaker 3: response to the virus rather than directly viral mediated. But
Speaker 3: one thing that can happen is it can lead to
Speaker 3: these little microclots, and in some cases of long covid,
Speaker 3: this has been shown to lead to long term damage
Speaker 3: to blood vessels that can affect things like oxygen delivery,
Speaker 3: which is pretty important for our blood vessels to be
Speaker 3: able to do. And this kind of damage can put
Speaker 3: people at a higher risk for a bunch of different
Speaker 3: cardiovascular diseases like heart failure, like dysrhythmias like your heart
Speaker 3: not being able to beat in a correct rhythm, increase
Speaker 3: risk of stroke. And the damage isn't just limited to
Speaker 3: the heart. We also have vascular systems everywhere else in
Speaker 3: our body, so you can see long term damage to
Speaker 3: our kidneys, you can see damage to the blood vessels
Speaker 3: in the lungs, and in some cases inflammation causing fibrotic
Speaker 3: changes in the lungs. And there's a lot of respiratory
Speaker 3: symptoms associated with long COVID as well. Okay, but there's
Speaker 3: one more thing that I want to talk about Erin,
Speaker 3: and that is the idea of neuroinflammation and kind of
Speaker 3: within that dysfunctional signaling in our brain stem and especially
Speaker 3: with our vagus nerve. And with this, I want to
Speaker 3: spend a little bit of time to revisit the neurologic
Speaker 3: symptoms associated with long COVID. Because of all two hundred
Speaker 3: plus symptoms that have been associated with long COVID, respiratory
Speaker 3: symptoms are very common, especially in the weeks to like
Speaker 3: short term months following COVID respiratory symptoms. Most people show
Speaker 3: some degree of improvement over time and sometimes back to baseline,
Speaker 3: depending on what their lung function was to begin with.
Speaker 3: But in many cases, the neurologic symptoms are not only
Speaker 3: the most prevalent just overall with long COVID, but the
Speaker 3: least likely to improve. Things like fatigue and cognitive dysfunction
Speaker 3: are often present in some studies in over eighty percent
Speaker 3: of people with long COVID, and especially in people who
Speaker 3: remain symptomatic after six months or more. So let's get
Speaker 3: into a little bit more detail on what these symptoms
Speaker 3: look like and what we think might be driving them.
Speaker 3: The neurologic symptoms are really varied, and these are things
Speaker 3: like fatigue, memory loss. It's often called brain fog like
Speaker 3: this cognitive impairment, but it also includes things like sensory
Speaker 3: motor symptoms like dizziness or balance issues. We also can
Speaker 3: see paristigias, so like abnormal sensations in the nervous system,
Speaker 3: autonomic dysfunction which can lead to dysautonomia, which we'll get
Speaker 3: into a little bit more detail on, but also like
Speaker 3: long term loss of taste or smell. Right, we know
Speaker 3: that a lot of people lose their sense of smell
Speaker 3: and taste with acute COVID, and some people don't get
Speaker 3: that back for months. We also can see hearing loss,
Speaker 3: we can see vertigo. Like the list goes on and on,
Speaker 3: and what I think is important about these neurologic symptoms
Speaker 3: like even listing them off like this, it does not
Speaker 3: do justice to the experience of living with these symptoms
Speaker 3: because when we say the word fatigue, or when we
Speaker 3: read the word fatigue, it is really hard to get
Speaker 3: across what that means. If you've never experienced it because
Speaker 3: fatigue sounds like tired. The kind of fatigue that can
Speaker 3: persist after COVID can be profound. It means that someone
Speaker 3: might not be able to get out of bed at all.
Speaker 3: They might not be able to roll over in bed,
Speaker 3: or be able to get up to feed themselves. It
Speaker 3: might mean that if they do get up and out
Speaker 3: of bed to do anything like make themselves food or
Speaker 3: wash the dishes, even if they exert themselves mentally more physically,
Speaker 3: then they will end up even worse than before they
Speaker 3: tried to get up in the first place. And that
Speaker 3: in specific is called post exertional fatigue or post exertional malaise,
Speaker 3: where trying to exert yourself results in significant worsening of
Speaker 3: this profound fatigue. It is one of the highlights of
Speaker 3: myalgic encephalomyelitis, which we'll talk about next week, or chronic
Speaker 3: fatigue syndrome, which a significant proportion of people living with
Speaker 3: long COVID meet criteria for me and CFS. Yeah, so
Speaker 3: this fatigue is profound and significantly interferes with people's life,
Speaker 3: like being able to do basic things for themselves or
Speaker 3: for others. It's not just a feeling of being tired.
Speaker 3: It also can significantly disrupt the sleep cycle, which means
Speaker 3: that even if people would want to sleep, their sleep
Speaker 3: cycle is completely disrupted, not getting RESTful sleep no matter
Speaker 3: how fatigue they are. And when we say something like
Speaker 3: cognitive impairment or this idea of brain fog, this again
Speaker 3: I think, does not express how significant the impairment can be.
Speaker 3: Some studies, I think out of the UK have looked
Speaker 3: at long COVID brain fog and it can be for
Speaker 3: some people like existing at the legal driving limit intoxication
Speaker 3: wise uh huh, or the equivalent of like ten years
Speaker 3: of cognitive aging. It's significant amounts of cognitive impairment that
Speaker 3: people can live with. And what's very interesting is that
Speaker 3: some studies that have looked at people who've recovered from
Speaker 3: COVID infection with and without a diagnosis of long COVID
Speaker 3: have found rates of cognitive impairment on like standardized objective
Speaker 3: measure tests to be significantly higher than what subjective measures are.
Speaker 3: So like, if you ask someone, they are going to
Speaker 3: report less symptoms than what they objectively measure, which means
Speaker 3: that people might have persistent cognitive effects from COVID without
Speaker 3: even recognizing a reduction in their function. Now, how do
Speaker 3: we explain any of these symptoms?
Speaker 2: Can we explain any of these symptoms?
Speaker 3: No, the underlying mechanisms here are really still unknown, but
Speaker 3: not entirely. There are a lot of possibilities, and I
Speaker 3: think that we'll get into even more detail on some
Speaker 3: of the nuance of this in our episode next week,
Speaker 3: because a lot of the data that we have so
Speaker 3: far comes from long studies on myalgic andencephalomyelitis and chronic
Speaker 3: fatigue syndrome. But in general, one thing that we know
Speaker 3: is that studies have shown generalized neuro inflammation, so like
Speaker 3: inflammation in our nervous system in general, to be associated
Speaker 3: with long COVID, and that means inflammation in a lot
Speaker 3: of different parts of our brain. We also some studies
Speaker 3: at least have maybe found like certain protein signals like
Speaker 3: clumps of proteins very similar to Alzheimer's like peptides in
Speaker 3: the brains of some people with long COVID, and so
Speaker 3: perhaps that is part of what's driving it. Again, we
Speaker 3: don't know, and we'll get into a little bit more
Speaker 3: detail on this next week. And then there's disautonomia, which
Speaker 3: is a big part of symptoms that we see in
Speaker 3: long COVID. One of the classic syndromes of dysautonomia is
Speaker 3: called POTS. A lot of people might have heard of this.
Speaker 3: POTS stands for postural orthostatic tachycardia syndrome, and this is
Speaker 3: a type of dysregulation of our autonomic nervous system, which
Speaker 3: is the nervous system that controls our heart rate, our
Speaker 3: blood pressure, but also our gut motility, like a whole
Speaker 3: bunch of things. We see a lot of disautonomia in
Speaker 3: people with long COVID. We have really no idea at
Speaker 3: this point what the drivers of this are aside from
Speaker 3: the fact that we also see a lot of this
Speaker 3: neuro inflammation and our vagus nerve, which goes from our
Speaker 3: brain like and touches like every single organ in our
Speaker 3: entire body literally is definitely like involved in that, if
Speaker 3: that makes sense, okay, But the specific underlying mechanisms we
Speaker 3: don't know. So that is what we know and a
Speaker 3: lot of what we don't know about COVID long COVID,
Speaker 3: and I will just say that that is not all
Speaker 3: of it. Like, there are other systems that are very
Speaker 3: commonly affected by long COVID, things like our reproductive system
Speaker 3: and a whole bunch of different symptoms that can happen
Speaker 3: the GI system. We kind of talked a little bit
Speaker 3: about we don't fully understand what those drivers are. And
Speaker 3: then even quite honestly, the respiratory symptoms that are associated
Speaker 3: with long COVID shortness of breath and cough are some
Speaker 3: of the most common symptoms, and we think that it's
Speaker 3: from damage to the linings of our airways, but we
Speaker 3: still don't really understand even that.
Speaker 2: If you're someone who thinks that, like you might have
Speaker 2: long COVID, what at this point, what does a physician
Speaker 2: or clinician say, like, what's on the checklist? Because it's
Speaker 2: like hot, you know, two hundred symptoms, So I like,
Speaker 2: are we meeting the needs of people who have long
Speaker 2: COVID as far as diagnosis goes.
Speaker 3: I don't think we're there yet. No, I don't think
Speaker 3: that we're really meeting the needs at this point. We
Speaker 3: don't really have a way to diagnose it period. So
Speaker 3: at this point it's still what we call a clinical diagnosis, right,
Speaker 3: somebody who had a known or suspected COVID infection and
Speaker 3: has persistent symptoms thereafter, and what's important is that sometimes
Speaker 3: the symptoms actually aren't persistent, in that they don't start
Speaker 3: until after someone quote unquote recovers from a COVID infection, Right,
Speaker 3: they might have a very mild respiratory illness and then
Speaker 3: a month or weeks later develop profound fatigue for example.
Speaker 2: Yeah.
Speaker 3: So no, we don't have like a perfect checklist, even
Speaker 3: we don't have tests that we can do, and what
Speaker 3: we really don't have and what people are really really
Speaker 3: looking for our biomarkers. Yeah, so that is what we
Speaker 3: know and don't know about long COVID in general.
Speaker 2: A lot to both, A lot to both.
Speaker 3: Overall, just in terms of like numbers, because we haven't
Speaker 3: even thrown any numbers on it. It's very variable of course,
Speaker 3: but in general it's estimated about nine to ten percent
Speaker 3: of cases of COVID will go on to have some
Speaker 3: degree of long COVID, which is a lot.
Speaker 2: It's a lot.
Speaker 3: And so what that means is that currently as of
Speaker 3: February twenty twenty four, there's been just over six hundred
Speaker 3: and fifty million cases like documented globally. So that's sixty
Speaker 3: five million people worldwide living with long COVID.
Speaker 2: Wow, okay, yeah.
Speaker 3: Yeah, So it's it's a lot. We don't have a
Speaker 3: lot yet in terms of treatment, and the only things
Speaker 3: that we have in terms of prevention are preventing COVID
Speaker 3: in general.
Speaker 2: So relationship between vaccines and long COVID have we found?
Speaker 3: Yeah, there is some data that people who are vaccinated
Speaker 3: are less likely to go on So it is a
Speaker 3: protective factor. It's not like a sure thing or anything,
Speaker 3: but there is some data that suggests that vaccination is
Speaker 3: protective against the development of long COVID specifically.
Speaker 2: And is there a difference between the earlier strains of
Speaker 2: stars COVID two versus like the you know, omicron or
Speaker 2: omicron take ten or whatever. It is a great question.
Speaker 3: I don't think we have enough data. We don't have
Speaker 3: enough data.
Speaker 2: Okay, Yeah, we'll get there someday.
Speaker 3: Yeah, someday with many more variants to come.
Speaker 2: Always always, Yeah.
Speaker 3: So that is a long episode on long COVID.
Speaker 2: Appropriate appropriately long for long COVID. Yeah, sources source. I
Speaker 2: didn't even think to compile mine where all just loose
Speaker 2: and a folder somewhere. I shouted out that one that
Speaker 2: I really liked by Callard and Parago from twenty twenty one.
Speaker 2: By all when twenty twenty one, The Teachings of long
Speaker 2: COVID by out at All from twenty twenty two, Long
Speaker 2: COVID and Medical gas Lighting. Great paper, there's a bunch,
Speaker 2: I'll post them there.
Speaker 3: I have also so so many, but I do think
Speaker 3: two of my absolute favorites was won by Davis at
Speaker 3: All from twenty twenty three in Nature Reviews Microbiology called
Speaker 3: long COVID Major Findings, Mechanisms and Recommendations. And then if
Speaker 3: you want such a deep dive on the immunology of this,
Speaker 3: there's a paper by client at All in Nature from
Speaker 3: twenty twenty three called Distinguishing Features of long COVID Identified
Speaker 3: through Immune Profiling. It was a great read. There's a
Speaker 3: lot more. We'll post them on our website, This podcast
Speaker 3: will Kill You dot com, where you can find the
Speaker 3: sources for this episode in all of our past six
Speaker 3: seasons too.
Speaker 2: Yes, so many sources, so little time. A huge thank
Speaker 2: you again to the provider of our first hand account.
Speaker 2: We really can't thank you enough.
Speaker 3: Yeah, thank you so much for being willing to take
Speaker 3: the time and share your story with us and with
Speaker 3: all of our listeners. Thank you to Bloodmobile for providing
Speaker 3: the music for this episode and all of our episodes.
Speaker 2: And thank you to Tom and Leanna for our amazing
Speaker 2: audio mixing. We really appreciate it.
Speaker 3: We love it. Thank you to Exactly Right Network, and.
Speaker 2: Thank you to you listeners. I hope this answered more
Speaker 2: questions than it prompted. I don't know. I believe that's okay,
Speaker 2: that's okay. Do you have more questions? We always do.
Speaker 2: We hope that you liked this episode.
Speaker 3: Yeah, And a special shout out to our patrons. Thank
Speaker 3: you so much for your support.
Speaker 2: It means the world. It means the world. Until next week.
Speaker 2: Wash your hands.
Speaker 3: You filled the animals.
Speaker 2: U umh