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Speaker 2: Oh hey, it's your aunt who always carries kleenex Ali
Speaker 2: ward in This episode is a long time coming, just
Speaker 2: about five years so. March eleventh, twenty twenty. It's been
Speaker 2: called the day that everything changed. I'm sure you remember
Speaker 2: a little something called the SARS Kobe two virus started
Speaker 2: to make its debut globally and COVID nineteen pandemic became
Speaker 2: a part of our lives and history, some people more
Speaker 2: than others. It's woven into your history, as worldwide studies
Speaker 2: estimate that the virus has caused directly or indirectly the
Speaker 2: deaths of up to thirty six million people. So, if
Speaker 2: you have had COVID and you bounced back quickly, you're lucky.
Speaker 2: If you haven't had it, you're lucky. If you've had it,
Speaker 2: you still feel weird. Sit down, let's discuss, and please
Speaker 2: do send this episode around to anyone who could use it.
Speaker 2: I know long COVID is on a lot of our
Speaker 2: minds and it's hard to find the information that you need.
Speaker 2: This is exactly what I've hoped that it would be. Okay,
Speaker 2: So in this part one, we're going to learn how
Speaker 2: to know if you have long COVID, the symptoms, why
Speaker 2: it happens, where in the body it happens, how it feels.
Speaker 2: And then next week we're going to talk more about
Speaker 2: treatments and advice if you think you have it, and
Speaker 2: some really wonderful firsthand experience from some friends and scientists
Speaker 2: I know who have struggled with long COVID, including some
Speaker 2: great advice for caregivers. So this expert ugh so good.
Speaker 2: So he got his MD from Tulane University in New Orleans, Louisiana.
Speaker 2: He is now a professor of medicine at Vanderbilt University
Speaker 2: Medical Center. He has published over four hundred and fifty
Speaker 2: peer reviewed papers. He's been cited over one hundred thousand times. Somehow,
Speaker 2: he also found time to author a critically acclaimed book.
Speaker 2: It's called Every Deep Drawn Breath, and it's about developing
Speaker 2: treatment for patients in the ICU that will improve their
Speaker 2: lives after illness. We'll talk about it. His lovely spouse
Speaker 2: also a pathologist. This guy lives in Breese It He's
Speaker 2: also a pulmonologist. Now when it comes to long COVID,
Speaker 2: he is one of the most highly respected and sought
Speaker 2: after specialists, and I was thrilled when he agreed to
Speaker 2: let me barrage him with all of our questions. We're
Speaker 2: going to get there in a second, but first, thank
Speaker 2: you to all the patrons at patreon dot com slash
Speaker 2: ologies who send their questions for this episode in and
Speaker 2: who support the show for as little as a dollar
Speaker 2: a month. Thank you to everyone out there listening to Somologies,
Speaker 2: which is our classroom safe, kid friendly, shorter spinoff show.
Speaker 2: You can find Smologies wherever you get podcasts. Thanks also
Speaker 2: to everyone out there wearing ologies merch fromologiesmerch dot com.
Speaker 2: Also for zero dollars and help just by leaving a review.
Speaker 2: I read every single one of them. Here's one just
Speaker 2: left by Yodelbat, who wrote, if you love hearing someone
Speaker 2: gush about a passion, then you will have a good time.
Speaker 2: And although, okay, this episode seems like, oh lord, covid still,
Speaker 2: but this expert is so passionate about it and so
Speaker 2: great at his job and so personable, and it lays
Speaker 2: out how yeah, COVID still, especially for some people. And
Speaker 2: also I could have never imagined how brightly, enthusiastic and
Speaker 2: compassionate he could. Be absolutely honored to have met him.
Speaker 2: So tuck in, breathe deep if he can, and let's
Speaker 2: load you up with true facts about what long COVID is,
Speaker 2: how it differs from other post viral illnesses, variance, and
Speaker 2: long COVID risks, why people say it's not real, Advice
Speaker 2: for caregivers, symptoms to look for, changing opinions in medicine,
Speaker 2: similarities to HIV treatment options, autoimmune issues, pots, post exertional malaise,
Speaker 2: The best way to prevent long COVID. How many spoons
Speaker 2: does it take to change a light bulb and why
Speaker 2: I need to start swimming and more with physician, professor, author, researcher, pulmonologist, intensivist,
Speaker 2: and post viral epidemiologist doctor Wes Ely.
Speaker 5: My name is Wes Ealy, and I'm a hymn and
Speaker 5: I am so thankful to be here today.
Speaker 2: I'm so excited. We've wanted to do this for a
Speaker 2: long long time. And long COVID is a tough one
Speaker 2: because you're not quite sure what experts are super up
Speaker 2: on the latest research. The biggest question I feel like
Speaker 2: I get or I hear is long COVID real, which
Speaker 2: is an interesting thing to say about, like a condition.
Speaker 2: But how often does the veracity of long COVID come
Speaker 2: up in your work?
Speaker 5: Ali? That's a great question and so important because we
Speaker 5: started to basics do we believe our patients? And I'll
Speaker 5: admit right off the bat, I'm a good person to
Speaker 5: ask because I didn't and I was wrong and I
Speaker 5: had to learn and wake up and say, wait a minute, Wes,
Speaker 5: look in the mirror. You're a fraud. You don't think
Speaker 5: this is real, but it is real, and you know
Speaker 5: I came to it naturally. If you really want to know,
Speaker 5: because I'm a product of traditional academic medicine, and we
Speaker 5: were not taught in medical school that chronic fatigue syndrome
Speaker 5: was real. We were taught that it was perhaps made
Speaker 5: up in people's mind. And then for twenty five years
Speaker 5: I studied the post intensive care syndrome, which is when
Speaker 5: people come into the ICU and get super sick and
Speaker 5: leave with head problems and body problems. And I just
Speaker 5: thought that COVID patients complaining months after COVID was that.
Speaker 5: And I just thought, Oh, these people don't even realize.
Speaker 5: It's just post intense care syndrome.
Speaker 2: And PICS or post most intensive care syndrome. It's a
Speaker 2: term that was coined in twenty ten and it's defined
Speaker 2: as this new onset or worsening of impairment in physical, cognitive,
Speaker 2: and or mental health that arises after the ICU and
Speaker 2: persists beyond hospital discharge. So PICKS symptoms can include fatigue
Speaker 2: and muscle weakness, anxiety and depression, and cognitive impairment at
Speaker 2: a year after an ICU stay and longer than that.
Speaker 2: And among surgery patients, it's more common for those who
Speaker 2: have had an unplanned urgent surgery than elective expected ones.
Speaker 2: So doctors have been hipped two picks post intensive care
Speaker 2: syndrome in ICU patients for at least fifteen years, and
Speaker 2: after recovering from an inpatient's day with COVID, it seemed
Speaker 2: to align with PICKS.
Speaker 5: But then they started calling said, wait a minute, I
Speaker 5: was never in the hospital, And I said what they said, No,
Speaker 5: I've never been in the hospital, and I can't walk right,
Speaker 5: and I can't my heart rates too high, and I
Speaker 5: can't think clearly. And so I had to say, wait
Speaker 5: a minute, West, this is not what you thought it was.
Speaker 5: There's something else going on.
Speaker 2: How far into the pandemic did that switch happen for you?
Speaker 5: It happened around not too late, obviously it's pretty early.
Speaker 5: But my doubting days were all the spring and early
Speaker 5: summer of twenty twenty, and already by June or July,
Speaker 5: especially July and August of twenty twenty, we had people
Speaker 5: contacting our research office saying, can you help us? And
Speaker 5: that was when I had real live conversations with people
Speaker 5: who said they were long hollers who had never been hospitalized,
Speaker 5: had only been outpatient, and were having these tremendous life
Speaker 5: changing difficulties. So I'd say four to six months into
Speaker 5: the pandemic, I was absolutely convinced it was real. But
Speaker 5: those first two or three months, even on Twitter, I
Speaker 5: was really confused to what was going on.
Speaker 2: What makes long COVID different from just post viral malaise.
Speaker 2: How is long COVID different from your system just trying
Speaker 2: to reboot and say, oh, man, that sucked, but I'm
Speaker 2: getting better.
Speaker 5: Yeah, I'd say two big things. Let's talk individual patients differences,
Speaker 5: and then epidemiologically at the population level. Individually, post viral illness,
Speaker 5: you know, after a bad flu, you feel bad for
Speaker 5: a couple of weeks. But what happens with patients who
Speaker 5: experience long COVID is that they oftentimes have a honeymoon.
Speaker 5: They don't always, but a lot of times they'll have
Speaker 5: a two or three month, ninety day honeymoon and then
Speaker 5: they just wham. They just get hit with these cognitive
Speaker 5: body disabilities that get worse and worse, and they really
Speaker 5: get incapacitated and disabled. So that's on the individual level.
Speaker 5: It's that this is way more pronounced than just a
Speaker 5: post viral malaise just a few weeks of recovery. This
Speaker 5: is something that's going on weeks and months and there's
Speaker 5: no recovery in sight on their own. And then on
Speaker 5: the epidemiological level, we've never had a post viral like
Speaker 5: a post flu epidemic of this proportion. So now we
Speaker 5: just have you know, millions of people with this problem
Speaker 5: societally and as a whole globally. So we've never had
Speaker 5: this many people to study an IACC infection associated chronic condition,
Speaker 5: which is what we call this. Now it's a disease state.
Speaker 2: Again, the term for this is now IACC. That's infection
Speaker 2: associated chronic condition. And no matter what the initial cause,
Speaker 2: and IACC tends to cause severe impacts to quality of life.
Speaker 2: It impacts more female patients than male, It involves neurological
Speaker 2: or immunological pathology, and it can affect a bunch of organs.
Speaker 2: So IACC doesn't have to be long covid Specifically, IACC
Speaker 2: is infection associated chronic condition, but long covid is an IACC,
Speaker 2: just like how not all succulents are cacti, but all
Speaker 2: cacti are succulents. Long covid is an IACC, not all
Speaker 2: iaccs are long covid. Cool.
Speaker 5: Yes, this is a disease state and it is real.
Speaker 2: What is it about covid itself that has a tendency to,
Speaker 2: or rather has the possibility to create long covid? You know?
Speaker 2: Is there something about the virus itself? Is it that
Speaker 2: it's a coronavirus? Is it the spike proteins? Why are
Speaker 2: we seeing so much long covid but not long influenza
Speaker 2: A or long step throat or something.
Speaker 5: Yeah, well there is long influence. So there's the pandemic
Speaker 5: of nineteen eighteen. The Spanish flu had post viral illnesses
Speaker 5: and so for over one hundred years we've known these exists.
Speaker 2: And just a quick recap on the nineteen eighteen flu pandemic.
Speaker 2: This caused fifty million deaths globally, and at the time
Speaker 2: there was obviously no vaccine, and according to a recent
Speaker 2: paper titled an Unwanted but long Known Company, post viral
Speaker 2: symptoms in the context of past pandemics in Switzerland and beyond,
Speaker 2: doctors in nineteen nineteen reported that the duration of recovery
Speaker 2: from this flu the nineteen eighteen flu varied considerably among patients,
Speaker 2: and it was often a desperately slow recovery, even in
Speaker 2: mild cases, and it continues that patients suffered from general weakness, exhaustion,
Speaker 2: sometimes acute psychosis or severe nervous depression which delayed their
Speaker 2: recovery further. And in addition, the paper says persistent heart
Speaker 2: problems were the main cause of long recovery times in
Speaker 2: a large number of cases. And that was about again
Speaker 2: the nineteen eighteen flu pandemic. We also have a three
Speaker 2: part ADHD episode with expert doctor Russell Barkley, and he
Speaker 2: mentioned that a big spike of kids who survived the
Speaker 2: nineteen eighteen flu were being diagnosed with what is now
Speaker 2: known as ADHD. So big illness waves leave a lot
Speaker 2: of ripple effects in terms of symptoms. But post flu
Speaker 2: conditions are a little different than long covid because.
Speaker 5: What COVID does. COVID is a very vascular problem. This
Speaker 5: is a viral illness that is extremely vascular. So the
Speaker 5: endothelium of our blood vessels gets infected with this virus,
Speaker 5: and it also does something to our immune system, whereby
Speaker 5: it basically turns on a light switch with our immune
Speaker 5: system which creates an immune mediated disorder in our bodies.
Speaker 5: And so these two things, the vascular nature of it
Speaker 5: and the way it turns on an immune mediated problem,
Speaker 5: which affects then the brain, that the autonomic nervous system,
Speaker 5: the cardiovastrosystem, the gias system, so many different organ systems,
Speaker 5: is something that becomes basically very dastardly for the human body.
Speaker 2: So if you heard the surgical angiology episode with a
Speaker 2: brilliant doctor Sheila Blumberg about veins and arteries, and our
Speaker 2: recent cardiology episode with doctor Hermann Taylor, you may remember
Speaker 2: how the endothelium lines the blood vessels and inflammation of
Speaker 2: that tissue can lead to injury of it and plaque
Speaker 2: build up. And remember that doctor Taylor said that there
Speaker 2: are several thousand miles of these vessels in your body.
Speaker 2: They go to every remote part of you. And in
Speaker 2: that episode, doctor Taylor explained why we don't want to
Speaker 2: treat the endothelium tissue like garbage, and one reason is
Speaker 2: to protect the veins, arteries and root to our hearts.
Speaker 2: We're going to get right back to doctor Eely in
Speaker 2: a minute or two, but I want to really quick
Speaker 2: refresh your memory with a clip from doctor Herman Taylor's
Speaker 2: cardiology episode we just did where he explains how those
Speaker 2: endothelial tissues inside your veins work or don't work. So
Speaker 2: let's have a quick listen to that.
Speaker 6: There's a certain head of pressure that's needed in the heart,
Speaker 6: but it can't be too much. If it's too much,
Speaker 6: then what can happen is those arteries that are so
Speaker 6: vital to the heart survival become damaged the lining inside
Speaker 6: of them called the endothelium. That then lining that allows
Speaker 6: for the exchange of oxygen and nutrients and so forth,
Speaker 6: is so very important. If it becomes damaged and starts
Speaker 6: to dysfunction, that allows all sorts of badness, like cholesterol accumulation,
Speaker 6: the formation of what we call fatty streaks, which are
Speaker 6: just it's like a giant oil slick on a road
Speaker 6: where you have cholesterol gathering breaking through the barrier that
Speaker 6: should be intact. That cholesterol event is being consumed by
Speaker 6: cells from the body that are designed to protect the
Speaker 6: body against invaders. But they come in they and gorge
Speaker 6: themselves on the cholesterol. They break down and form debris.
Speaker 6: It causes inflammation, and there's this cascade of events that
Speaker 6: then leads to the body trying to contain it by
Speaker 6: forming a plaque over the top. A very fragile covering
Speaker 6: over this whole mess, right, and that contains the damage
Speaker 6: for a while, and it could be years. This whole
Speaker 6: process can take years in development. In fact, we see
Speaker 6: some of these changes I'm describing, and the autopsies of
Speaker 6: soldiers who are eighteen nineteen years old, you can see
Speaker 6: the very beginnings of this process. Anyway, that type of
Speaker 6: damage can be initiated by pressures that are too high.
Speaker 6: That then sets up a situation where that plaque could
Speaker 6: erode or rupture.
Speaker 2: And remember that plaque is like spackle over a moldy.
Speaker 6: Wall, exposing all of that garbage to the blood passing by,
Speaker 6: which sort of sees it as this disruption in the
Speaker 6: artery and then sends all sorts of things to fix
Speaker 6: this break in the artery. Platelets, which you remember from
Speaker 6: high school biology, are mainly intended to stop you from bleeding, right,
Speaker 6: They form a clot to close a cut you may
Speaker 6: have or a bruise. But in this case, the platelets,
Speaker 6: which are like think of these tiny pieces of velcrow.
Speaker 6: They come to the site where all of this has happened,
Speaker 6: and they stick to each other as well as sticking
Speaker 6: to the site.
Speaker 2: And also, as we covered in the surgical in geology episode.
Speaker 2: It's been estimated that the human circulatory system would stretch
Speaker 2: out to be over ninety five thousand kilometers in order
Speaker 2: to pump more than seventy five liters of your blood
Speaker 2: every day. By the way, that's sixty thousand miles and
Speaker 2: two thousand gallons if you are American now. As for
Speaker 2: COVID and clotting, a twenty twenty three study risk of
Speaker 2: thrombosis during and after SARS COVID two infection Pathogenesis, Diagnostic
Speaker 2: Approach and Management in the journal Hematology Reports says that
Speaker 2: COVID nineteen increases the risk of thrombo embolic events, especially
Speaker 2: in patients with severe infections requiring intensive care and cardio
Speaker 2: respiratory support ventilation and COVID nineteen patients with these clotting
Speaker 2: complications have a higher risk of death and if they survive,
Speaker 2: these complications are expected to negatively impact their quality of life.
Speaker 2: So COVID increases the risk of blood clots, and the
Speaker 2: worser case of it, the more at risk you are
Speaker 2: for those blood clots. And it also says that recent
Speaker 2: data show that the risk of thrombo embolism remains high
Speaker 2: months after infection, So COVID ups your chance of clots,
Speaker 2: and data show that it can infect coronary vessels. So
Speaker 2: how do you not get blood clots and thrombosis? Never
Speaker 2: a bad idea to avoid getting COVID. Remember, get your boosters.
Speaker 2: Don't be afraid to mask up because a blood clot
Speaker 2: is way scarier than a weird look from a stranger.
Speaker 2: In my opinion and my experience. Did I fly three
Speaker 2: days ago and was I the only person I saw
Speaker 2: on the plane wearing a mask? Sure?
Speaker 5: Was?
Speaker 2: Do I give a shit? No? I don't want that.
Speaker 2: But back to doctor Eli, why is long COVID such
Speaker 2: a bitch?
Speaker 5: Let's talk a little bit about how it might be
Speaker 5: different though than other viral ilysis. Would that be okay?
Speaker 2: Yes? Yes, get into it, okay, Like if.
Speaker 5: You think about diseases like HIV. You know HIV is
Speaker 5: a global viral problem that creates a chronic illness. And
Speaker 5: what the HIV virus does, which is so genius of
Speaker 5: the virus, is that it figures out a way to
Speaker 5: go undetected in the body, So it hides itself in
Speaker 5: the body in a dormant state and inculcates itself into
Speaker 5: the genome, so that where the virus is hanging out,
Speaker 5: instead of those cells dying, it actually promotes the life
Speaker 5: of those cells and can even increase their cell turnover.
Speaker 5: So thereby doubling and tripling and quadrupling, the virus copies itself.
Speaker 2: So HIV hides in specific cells and then encourages just
Speaker 2: those cells to make more of them. It's kind of
Speaker 2: like a Ponzi scheme.
Speaker 5: So thank goodness COVID hasn't learned that COVID doesn't know
Speaker 5: how to do that. And the main two theories of
Speaker 5: long COVID it's probably a little at both end, but
Speaker 5: in fact, we just published a paper two days ago
Speaker 5: on viral persistence, which is one leading theory. But the
Speaker 5: other one is not just that the virus is still
Speaker 5: hanging around causing problems, but that while it was here
Speaker 5: it did something to activate the immune system, which may
Speaker 5: need immune modulation down the line for therapies to dampen
Speaker 5: down and either turn off or turn down the disease
Speaker 5: state of long COVID.
Speaker 2: And so what the common theory or the common thought
Speaker 2: of is is you get COVID, your immune system goes
Speaker 2: what is this? What's going on? And then instead of
Speaker 2: getting better from the virus, your immune system just goes WHOA,
Speaker 2: I'm still out of whack and just keeps firing things off.
Speaker 2: Is it tend to just be thought of under the
Speaker 2: umbrella of autoimmune diseases.
Speaker 5: Yeah, generally you can put this in a camp of
Speaker 5: is this an ongoing infectious problem, infectious disease problem, or
Speaker 5: is it an ongoing immunological disease. You might think like
Speaker 5: rheumator earthritis or loopus. And in fact, we now know
Speaker 5: through millions of patients studied in Germany, the UK, the
Speaker 5: United States in the very large coorch studies, that there
Speaker 5: is a doubling or a tripling of these autoimmune diseases
Speaker 5: like lupus, rheumature arthritis, chogrin syndrome, And so we know
Speaker 5: that that happens. Diabetes as well, oftentimes is thought to
Speaker 5: be an immunological disease, and there's a very clear cut
Speaker 5: risk of getting acquired diabetes in long COVID. Wow.
Speaker 2: And we have a great two part diabetology episode with
Speaker 2: self described diabetic diabetologists doctor Mike Natter, which explains the
Speaker 2: different ways that pancreas can crap out on you. Causing
Speaker 2: type one or type two diabetes. But yeah, if your
Speaker 2: body sees its own tissue as the enemy, like with MS,
Speaker 2: or psoriasis or lupus or rheumatoid arthritis, etc. Then it's
Speaker 2: a really delicate operation to calm your own shit down.
Speaker 2: And the two main thoughts are that long COVID is
Speaker 2: this continued attack by the virus plus continued to attack
Speaker 2: on yourself by your own immune system because of the virus.
Speaker 2: It's a real why are you hitting yourself situation? It's infuriating.
Speaker 2: Now if the virus, say, was an arsonist, then your
Speaker 2: immune system is like a firefighter who is trying to
Speaker 2: put out the fire, but who is blasting you so
Speaker 2: hard with a fire host that you're drowning. At least
Speaker 2: that's a hypothesis.
Speaker 5: We've learned a lot, but there's a lot more to learn.
Speaker 2: What about other diseases kind of under or rather, what
Speaker 2: about other autoimmune diseases that might be sparked by a
Speaker 2: virus like MS or chronic fatigue syndrome or I always
Speaker 2: say this wrong. I think it's wheelan bar but I'm
Speaker 2: or Wheelin Yan Beret gyanbre Gillanbret Gyan beret. Always say
Speaker 2: that wrong, and then I always triple guess myself. It's French.
Speaker 2: It looks like Gillian bar, but it's pronounced beret like
Speaker 2: as Gillan beret, and it sucks. Gian beret can arise
Speaker 2: after an illness or a surgery, and symptoms can include
Speaker 2: muscle weakness, starting in the hands and feet and progressing
Speaker 2: even up to the facial and eye muscles and the
Speaker 2: respiratory system, and can even be fatal. But back to COVID,
Speaker 2: but is long COVID similar to those at all that
Speaker 2: could be kind of ignited by a virus or an illness.
Speaker 5: That's a really good analogy and in medicine, that is
Speaker 5: essentially what we think happens. You know, these diseases like
Speaker 5: after a viral illness. I have a friend who just
Speaker 5: this past December got a viral illness upper and lower
Speaker 5: restore tract infection, and then within a week started feeling
Speaker 5: very weak in her hands and feet and then ascended
Speaker 5: and she ended up on a ventilator. And that was
Speaker 5: a post viral onset of gion beret. And she got
Speaker 5: better and we gave aminoglobulin for that disease process, and
Speaker 5: we know Some of these are well treated by therapies
Speaker 5: like aminoglobulin, but others aren't. And unfortunately, long COVID hasn't
Speaker 5: been proven to respond to different types of disease treatments
Speaker 5: that we've used in other diseases, like systemic steroids or
Speaker 5: immunotherapy or plasmaphoresis. Those things haven't helped patients in concrete manners.
Speaker 2: And just a few options when it comes to therapies.
Speaker 2: There are systemic cortico steroids that can tamp down inflammation
Speaker 2: in your body, and those are delivered either orally or
Speaker 2: through injections. There's also something called plasma faresis, which involves
Speaker 2: a blood draw and then the blood is separated into
Speaker 2: its red blood cells, white blood cells, and its plasma,
Speaker 2: and then the plasma is delivered to the patient intraveniously.
Speaker 2: And according to a very recent study which came out
Speaker 2: less than two weeks ago it was titled Plasma exchange
Speaker 2: Therapy for the post COVID nineteen condition, a phase two,
Speaker 2: double blind, placebo controlled randomized trial within the journal Nature
Speaker 2: found that while plasma exchange was safely tolerated, it did
Speaker 2: not lead to any discernible improvement of the long COVID
Speaker 2: in this clinical trial.
Speaker 5: Unfortunately, there are individual people who say they've been helped,
Speaker 5: but we don't have well done, random, mask controlled trials
Speaker 5: showing that that's a reproducible benefit for our long COVID patients.
Speaker 2: Why do you think COVID is like nah?
Speaker 5: Well, sometimes I globin is hitting a specific antibody that's
Speaker 5: been produced that's causing the problem, and we don't have
Speaker 5: immune markers like that for long COVID. In fact, there
Speaker 5: are no really beautifully proven blood tests and or biomarkers
Speaker 5: for long COVID yet now there are some coming out.
Speaker 5: I don't want people to say, wait minute, he didn't
Speaker 5: know about I know about research that's coming down the pipe,
Speaker 5: but there's nothing commercially available and on a large scale
Speaker 5: that is yet mainstream.
Speaker 2: So there's promising research, but no easy long COVID tests
Speaker 2: you can take.
Speaker 5: But there's a lot of people in labs around the
Speaker 5: world that we're learning that hopefully we will have a
Speaker 5: bio marker. I was on the committee of the National
Speaker 5: Academy of Sciences, Engineering and Medicine NASUM where we helped
Speaker 5: redefine long COVID. Maybe we'll get to that later. We will,
Speaker 5: And that was one of the caveats in our report
Speaker 5: after working for over a year on this project, was
Speaker 5: that we need to update our long COVID definition every
Speaker 5: couple of years because the science is fast and furious
Speaker 5: and we don't want to be out of date and irrelevant.
Speaker 2: Well, that's a perfect time to ask, what does long
Speaker 2: COVID look like? What kind of symptoms do people have?
Speaker 2: If right now as we're speaking, there's not a commercially
Speaker 2: available test for long COVID. You can't roll into your
Speaker 2: doctors and be like, hey, yes or no, do I
Speaker 2: have long COVID? What kind of symptoms are we seeing
Speaker 2: that we're grouping together under long COVID?
Speaker 5: Sure? Let me Can we just use real life examples
Speaker 5: that I have permission to share. I won't say their names,
Speaker 5: but these people have given me written sign permission to
Speaker 5: share their stories generally even their names. But I'm not
Speaker 5: gonna do that today. But how about a young man
Speaker 5: in his mid twenties who is an engineer working with
Speaker 5: experiments to make, for example, electric cars better and faster,
Speaker 5: and or surgical equipment better and more safe, and ticking
Speaker 5: along a very good athlete riding two thousand feet in
Speaker 5: elevation for six hours at a time and gets COVID,
Speaker 5: has a honeymoon, gets a little better, but within sixty
Speaker 5: to eighty days starts getting hit with extreme fatigue, has
Speaker 5: a tremendous difficulty riding his bike, then notices at work
Speaker 5: he can't finish his experiments cognitively and just says, you know, now,
Speaker 5: even a year or two into this, washing his car
Speaker 5: will wipe him out for a week. Yesterday, I went
Speaker 5: to the home of a young woman who is suffering
Speaker 5: from long COVID, a teenager, and she knows that I
Speaker 5: have permission to share her story as well. I met
Speaker 5: with her in her bedroom with her mother, and she
Speaker 5: said that she will go out of her bedroom one
Speaker 5: day in a week. Perhaps has been in that bedroom,
Speaker 5: bed bound, as she said, for over a year, and
Speaker 5: has had to drop out of school and has no hope.
Speaker 5: I was trying to build hope for and I want
Speaker 5: these people to never lose hope, because we're not going
Speaker 5: to stop until we get answers for them. But she
Speaker 5: told me this great story, which I think is relevant
Speaker 5: for your listeners, that she operates by the spoon theory,
Speaker 5: and I have this many spoons in my cup and
Speaker 5: this activity is going to take two of my four
Speaker 5: spoons or two of my six spoons, and I'm gonna
Speaker 5: have to stop. And she said, after we finished this interview,
Speaker 5: doctor Eli, doctor West, I will be in the bed
Speaker 5: for four days. She sat up, She was exuberant. She
Speaker 5: talked to me the whole time. She said, this is
Speaker 5: taking everything I've got. I will use all six of
Speaker 5: my spoons for this interview, which would lasted now and
Speaker 5: an hour and a half. And I felt terrible after
Speaker 5: hearing her say that, And she said, it'll take me
Speaker 5: four days to get myself back after this. And I'm
Speaker 5: checking in with her later today to make sure she's
Speaker 5: doing okay. But that's what they're suffering from, is this
Speaker 5: massive amount of PEM or post exertional malaise or like
Speaker 5: the first pasion I told you, tremendous cognitive difficulties even
Speaker 5: at a young, very otherwise brilliant mind, life changing.
Speaker 2: So this spoon theory was coined in a two thousand
Speaker 2: and three essay by American writer Christine Miserandino and folks
Speaker 2: who are dealing with chronic illness sometimes refer affectionately to
Speaker 2: themselves as spoonies. And for more on chronic illness and disability,
Speaker 2: we put out a great disability sociology episode for Disability
Speaker 2: Pride Month last July, featuring the legendary doctor Gwenn Chambers.
Speaker 2: And now a quick background on EMYCFS. So, the CDC
Speaker 2: defines it as a serious and often long lasting illness
Speaker 2: and it keeps people from doing their usual activities. It
Speaker 2: makes physical and mental exertion really difficult. Symptoms include trouble thinking,
Speaker 2: severe tiredness, and there's no known cure. Care usually means
Speaker 2: treating the symptoms that most affect a person's life. Would
Speaker 2: this be classified under MECFS or is that a different
Speaker 2: kind of label on a different disease? But I feel
Speaker 2: like my friends who have had long COVID talk a
Speaker 2: lot about that, and you know, I hear a lot
Speaker 2: about that post exertional malaise being completely wiped out. Have
Speaker 2: you heard of the physics girl Diana Khan? Yeah, so
Speaker 2: she's a friend of ours too, and she's getting a
Speaker 2: little bit better, which is great. But MEYCFS is something
Speaker 2: that I hadn't heard about until friends had long COVID.
Speaker 2: Where does that? Where's the Venn diagram of that? Yeah?
Speaker 5: Thank you for bringing up Dinah's story. She's a beautiful
Speaker 5: person and her husband as well an amazing caregiver and
Speaker 5: a good example of how the caregivers are a big
Speaker 5: part of this story because the caregiver burden is a myss.
Speaker 2: We're going to hear more firsthand advice for patients and
Speaker 2: caregivers from Diana and her husband Kyle in part two,
Speaker 2: but first we're going to donate to a cause of
Speaker 2: doctor Eli's choice, and he pointed us toward Critical Illness,
Speaker 2: Brain Dysfunction and Survivorship Center, which is composed of an
Speaker 2: interprofessional group of physicians and nurses and psychologists and biostaticians,
Speaker 2: epidemiologists and more who work with patients who are or
Speaker 2: have been critically ill and are at risk for long
Speaker 2: term cognitive, functional, and neuropsychological impairments. Now Wes is the
Speaker 2: center's co director and you'll learn a little bit more
Speaker 2: about how ologies can support their patients in next week's episode.
Speaker 2: Thanks to you, and thanks to sponsors of the show.
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Speaker 2: Okay, back to long COVID and Wes and I were
Speaker 2: talking about caregivers and how next week we're going to
Speaker 2: hear more advice from them. In talking to Kyle, the
Speaker 2: husband of physics girl science communicator Diana Coweren, who's been
Speaker 2: suffering with long COVID and EMMYCFS since twenty twenty two,
Speaker 2: and last June, Kyle posted in honor of the couple's
Speaker 2: second wedding anniversary detailing that quote. Diana has been one
Speaker 2: hundred percent bedbound with long COVID. She lays in a
Speaker 2: dark room ear plugs in with only her mind and
Speaker 2: simple thoughts to keep her company. No she can't talk,
Speaker 2: watch TV, read books, listen to podcasts, or even music.
Speaker 2: She can't tolerate visitors. Even the faint smell of laundry
Speaker 2: detergent makes her sick. It's a kind of locked in hell,
Speaker 2: he writes, and there's currently no cure for this disease. Thankfully,
Speaker 2: Diana's condition has improved modestly in the last few months,
Speaker 2: but it's still extreme ups and downs.
Speaker 5: And my heart goes out to her and to all
Speaker 5: of those suffering MECFS. Hermologic andcephalomiaelitis. Chronic fatigue syndrome is
Speaker 5: the formal name of what we used to call chronic fatigue,
Speaker 5: and these Venn diagrams are very overlapping. This young woman
Speaker 5: I met with yesterday thought for a year and a
Speaker 5: half that she just HADCFS, and everybody was dissing her
Speaker 5: informal medical evaluations about the possibility of long COVID, And
Speaker 5: when I reviewed her history and her actual documented times
Speaker 5: when she had positive COVID tests, her story fits perfectly
Speaker 5: for long COVID, and her symptom complex is broad enough
Speaker 5: that I think in her example, the MAACFS fits underneath
Speaker 5: the umbrella of a larger diagnosis of long COVID, and
Speaker 5: many patients would tell you that MACFS is part of
Speaker 5: their long COVID disease state. Others might argue with that characterization,
Speaker 5: but for example, as a scientist, as a physician scientist,
Speaker 5: I'm working with a lot of people on a large
Speaker 5: trial that we are now enrolling into call Reverse long
Speaker 5: Covid our VLC, and I sponsored, and we use MACFS
Speaker 5: tests and symptom batteries as part of our measurements to
Speaker 5: see what our intervention is doing or not doing. And
Speaker 5: it's a double bland placiba control trial, so I can't
Speaker 5: tell you anything about the results as of yet, and
Speaker 5: we'll be doing this trial for several years.
Speaker 2: Okay, So long covid can cause MACFS in that inflammation
Speaker 2: in the brain coupled with fatigue may be diagnosed as MACFS,
Speaker 2: and that MECFS could be long covid or it could
Speaker 2: be another AICC infection associated chronic condition.
Speaker 5: But my point to you is that I absolutely believe
Speaker 5: that patients who suffer long covid meet the criteria of
Speaker 5: a MECFS. And if MACFS is new and onset after
Speaker 5: the COVID pandemic, many of those patients actually have long
Speaker 5: COVID or.
Speaker 2: Both, and you said there's no test as of now.
Speaker 2: But as a doctor, you're very patient centered, and you
Speaker 2: wrote a whole book about how the way that we
Speaker 2: look at how we treat patients needs to shift a
Speaker 2: little bit. And you know, you don't hear a lot
Speaker 2: of doctors being like I went to a patient's bedside
Speaker 2: and talk to her for a while, Like it doesn't
Speaker 2: I feel like that doesn't happen very often. How do
Speaker 2: you approach this kind of care, especially for a disease
Speaker 2: that is still our knowledge is still developing, and you
Speaker 2: might be the fifth doctor that someone's seen because no
Speaker 2: one believes them. What's your philosophy and how to care
Speaker 2: for patients with this?
Speaker 5: All I can say, Ali, is that a lot happens
Speaker 5: in my mind when you ask me that question, But
Speaker 5: I just approach it on my knees. And what I
Speaker 5: mean by that is actually on my knees, you know,
Speaker 5: kneel down before this person because I am there to
Speaker 5: serve them and to try and make them big and
Speaker 5: me small. And by that I mean that there's nothing
Speaker 5: I can ever do to earn the privilege of being
Speaker 5: with people who are suffering in this regard, and our
Speaker 5: patients who are suffering with long COVID have been through
Speaker 5: so much and not listened to that. The way I
Speaker 5: want to start this relationship is to listen. I want
Speaker 5: to hear who are you, how are you suffering? What
Speaker 5: makes you you? I start, oftentimes by simple questions like
Speaker 5: can you just tell me? I call them e les
Speaker 5: four questions. What are your favorite hobbies, your favorite music,
Speaker 5: your favorite food, and your pet's names? Because once I
Speaker 5: know these things about people, you know that they love
Speaker 5: Bob Dylan, and you know they love Chinese fusion, and
Speaker 5: their dog's name is Bacchus, the god of wine. And
Speaker 5: their favorite hobbies is that they work on cars, spare
Speaker 5: tivers something. Then I have a I go, oh my gosh,
Speaker 5: this is an entire person, mind, body, and spirit. Wes
Speaker 5: never allow yourself to think of this person as a
Speaker 5: diseased heart or kidneys, or stomach or brain. This is
Speaker 5: a whole person West How willing am I to dive
Speaker 5: into the chaos of this person's life and provide lifting
Speaker 5: and healing? And so that's where it all starts for me,
Speaker 5: Ali is can we see how you're suffering? Try and
Speaker 5: understand that and I don't have all the answers for you,
Speaker 5: but I'm going to stay with you and we'll start
Speaker 5: this process together.
Speaker 2: Do you have just like a years long waiting list
Speaker 2: of people that want to see you? How do you
Speaker 2: decide who you see?
Speaker 5: I see who I can and we know we love it.
Speaker 5: I'm an ic you doctor, you know. I started at
Speaker 5: the bedside and I love taking care of critically ill people.
Speaker 5: And that was why I got it wrong at the
Speaker 5: very meeting with long COVID, because we had all these
Speaker 5: COVID patients in the ICU on the ventilators, and no
Speaker 5: doubt they left with tremendously bad post intensive care syndrome picks.
Speaker 5: But it's a really beautiful thing to be able to
Speaker 5: be let in. People let you into their life. There's
Speaker 5: no way I can earn that. I mean, they're allowing
Speaker 5: me into their life and it's a gift to me.
Speaker 5: So we have to do everything we can for these
Speaker 5: patients and make them feel heard. And they bring into
Speaker 5: this situation not only the trauma of their bodies disease,
Speaker 5: but the trauma of having not been listened to and
Speaker 5: having been shunned and turned away. And that's adding insult
Speaker 5: to injury. So that needs to stop.
Speaker 2: If you suspect you have long COVID and you go
Speaker 2: to a doctor, how do you feel like doctors should
Speaker 2: approach this? If there are any doctors listening, or if
Speaker 2: there's any patients who could have some kind of game plan,
Speaker 2: what is the arc of treatment or seeing a patient
Speaker 2: like in an idealized way.
Speaker 5: The first thing that the doctor, the nurse partition, or
Speaker 5: the PA, the nurse, anybody needs to do is say,
Speaker 5: let me get rid of my biases, get rid of
Speaker 5: my presuppositions, and any any judgments of you at all.
Speaker 5: I'm talking to the patient. I mean, you don't have
Speaker 5: to say this out loud. This is just a mental approach,
Speaker 5: and let me just see who you are and tell
Speaker 5: me your stories. So I need to be a sleuth here.
Speaker 5: Let's understand when did you get COVID exactly and what
Speaker 5: documentation do you have of that COVID? So let's see
Speaker 5: you know, okay, in January of twenty twenty two, you
Speaker 5: got COVID. That was your second bout. Before that, you
Speaker 5: had no symptoms. But on the second round of COVID,
Speaker 5: you're telling me that in late February eight weeks later,
Speaker 5: you got wham hit. You couldn't go back to work,
Speaker 5: you were bedbound, and you couldn't think clearly. Okay, that's
Speaker 5: a seven to eight week timeframe that fits perfectly for
Speaker 5: disease state onng COVID. Now tell me how did your
Speaker 5: symptoms evolve, what did you try to do to fix it,
Speaker 5: how did it get worse or better? And what have
Speaker 5: you tried since? So it's just being a good history
Speaker 5: taker and a good listener and not thinking that. We know.
Speaker 5: I'm not Buddhist, but this great Tao ta Ching number
Speaker 5: sixty five in Buddhism says the ancient masters taught the
Speaker 5: student to not know, because if the student thinks they know,
Speaker 5: they cannot be taught. But if you know, you don't know.
Speaker 5: So when you come to me with your complaints, I
Speaker 5: don't know how you're suffering. Yet I have to suspend
Speaker 5: judgment and listen to you. And that's where we start,
Speaker 5: and all good clinicians should start with that.
Speaker 2: What have you seen as the most effective intervention for
Speaker 2: long COVID. I know we used to hear if you've
Speaker 2: got COVID, you should exercise, that'll help, And now we
Speaker 2: hear maybe don't do that. But any tips for preventing
Speaker 2: getting long COVID.
Speaker 5: The best evidence about prevention of long COVID is to
Speaker 5: not get COVID obviously, And so that kind of sounds
Speaker 5: stupid like it does statement, But you know, do what
Speaker 5: you think is right or what your doctor or health
Speaker 5: professional advises you to avoid exposure. And if you have
Speaker 5: had multiple infections, you are clearly at higher risks for
Speaker 5: getting long COVID, And there are good data to say
Speaker 5: that either multiple vaccinations, completing a series and or not
Speaker 5: getting infected as many times are some of the protective factors. Now,
Speaker 5: let me say on that that I absolutely believe in
Speaker 5: vaccine injury. There's no question in my mind that people
Speaker 5: have gotten this disease state of a long COVID like
Speaker 5: illness from the vaccine. And we have patients in our
Speaker 5: clinic who have vaccine injury and the symptom complex is
Speaker 5: basically identical to what our long COVID patients have experienced.
Speaker 5: So I know that's true, and many people have said
Speaker 5: it's not true, and I think that's incorrect. So I
Speaker 5: want to acknowledge and know that the people who have
Speaker 5: vaccine injury have a voice here and that I'm hearing
Speaker 5: them and many others are hearing them as well. And
Speaker 5: what we hope, by the way, is that our treatments
Speaker 5: for long COVID will also help those with vaccine injury
Speaker 5: as well. So there's going to be a hopefully an
Speaker 5: overlap and therapeutic approach here.
Speaker 2: So while some people's bodies react with immune issues out
Speaker 2: dur an actual viral illness, others might be triggered by
Speaker 2: an antibody in a vaccine, which is very unfortunate. And
Speaker 2: I myself have gotten five COVID shots, I've never had
Speaker 2: COVID thankfully, knocking on would or a bad reaction, and
Speaker 2: vaccine's still best way to prevent getting COVID in the
Speaker 2: first place.
Speaker 5: Yes, I believe in vaccines. As I said earlier, I'm
Speaker 5: sorry for those who have vaccine injuries. Some of your
Speaker 5: listeners will have that. I'm not trying to disregard what
Speaker 5: you've suffered from that. But at a population level, no doubt,
Speaker 5: the data are clear that being vaccinated lowers your risk
Speaker 5: of getting long COVID.
Speaker 2: Are there stats in terms of like the percentage of
Speaker 2: people that get a vaccine injury? Does it tend to
Speaker 2: be very slim right.
Speaker 5: So that's why I say that vaccines are still the recommended.
Speaker 5: So if your doctor recommends you to get a vaccine,
Speaker 5: you go get that vaccine. You're not doing it with
Speaker 5: no risk, but you're actually mathematically lowering your risk of
Speaker 5: long COVID, not increasing it. And that's the thing. So
Speaker 5: you could get a vaccine injury, but chance of getting
Speaker 5: vaccine injury is so much less than getting COVID and
Speaker 5: then have a substitute long COVID that the odds are
Speaker 5: in your favor if you go with the vaccine route.
Speaker 5: I hate it that some people who do that will
Speaker 5: end up suffering vaccine injury. The numbers, though, are way different.
Speaker 5: It's not a comparable number.
Speaker 2: That's great to know.
Speaker 5: So I dove into prevention a little bit. But let's
Speaker 5: go back to treatment. So if somebody develops long COVID
Speaker 5: or any IICC infection associated chronic condition, we believe that
Speaker 5: the right approach is these people have to be listened
Speaker 5: to carefully and individually approach. So one person's symptom complex
Speaker 5: will be more GI and cognitively related, another person's symptom
Speaker 5: complex will be more fatigue PEM, and another person simptom
Speaker 5: complex will more pots, postural orthoceptic tack of gardia.
Speaker 2: Syndrome more on pots in a bit.
Speaker 5: So that's the reason that your listeners are probably frustrated
Speaker 5: right now. There's not anyone blanket treatment which is best treatment,
Speaker 5: because this treatment has got to be individualized. If you
Speaker 5: talk to the world's best clinicians in mecfs, who are
Speaker 5: excellent in carrying, doctors who take good care, they say
Speaker 5: it's always I start with the individual. Bob and Sally
Speaker 5: may have very different approaches because I'm going to listen
Speaker 5: to what they've got. One person may need salt loading
Speaker 5: and volume loading to prevent them from getting hypotensive and
Speaker 5: extreme tachycardia, and another person doesn't need that at all,
Speaker 5: but needs an actual medication to control their heart rate.
Speaker 5: While a third person is really having tremendous GIS symptoms
Speaker 5: and we're gonna have to work with those symptoms rather
Speaker 5: than the cardiovascosymptoms. You also asked about exercise. Do you
Speaker 5: want to talk about that and how we've gotten mixed messages?
Speaker 2: Yeah, yeah, I would love that.
Speaker 5: Okay. So a great example of this individualization of treatment is,
Speaker 5: for example, that in post intensive care syndrome. We rehabilitate
Speaker 5: people with physical and cognitive rehabilitation and they get a
Speaker 5: lot of benefit. And so at the beginning of long COVID,
Speaker 5: when we were just starting out taking care of patients
Speaker 5: who have this new disease date, we tried those similar
Speaker 5: approaches and many of them got worse. And the reason
Speaker 5: is that their post exertional malays, which we think probably
Speaker 5: is related to mitochondrial injury, really couldn't tolerate those same
Speaker 5: sorts of ramping up of physical therapy approaches which we
Speaker 5: had taken in the past. Ramped up, I mean, Monday
Speaker 5: this week is going to be less than next week,
Speaker 5: and next week can be more than the previous, and
Speaker 5: we keep ramping up in time, and those people got
Speaker 5: tremendously ill because we didn't approach it from an ECFS
Speaker 5: approach of post exertional malays. The fame is true with
Speaker 5: cognitive rehabilitation, whereas patients years after an ICU stay who
Speaker 5: have essentially an acquired dementia can really get their brain
Speaker 5: back with brain exercises. In fact, we have several ongoing
Speaker 5: randomizes controlled trials of brain exercises in people who have
Speaker 5: acquired dementia after critical illness, But our long COVID patients
Speaker 5: tell us that the brain exercises wear them out and
Speaker 5: make them have physical fatigue just from the brain exercises.
Speaker 5: So really we have to take a fresh look at
Speaker 5: these approaches and don't think it's a one shoe fits
Speaker 5: all because it isn't. And that's one thing that really
Speaker 5: angers the long COVID community when we try and push
Speaker 5: onto them some treatment that worked in a different population.
Speaker 2: Right. You mentioned that it's a very vascular disease. Is
Speaker 2: that the vascular system sort of going haywire in different ways?
Speaker 2: Or is it the vascular system, it's the mitochondrial system.
Speaker 2: It's so many things affected.
Speaker 5: Okay, so let's talk about the vascular system for a minute.
Speaker 5: When I was in medical school with the two Lane
Speaker 5: Medical School back in the eighties, I'm old now, I'm
Speaker 5: sixty one years old. You can see that right.
Speaker 2: Here, this dude appears to be maybe fifty tops even
Speaker 2: over like a zoom call. He's the kind of guy
Speaker 2: who you can tell wakes up like early to go
Speaker 2: swimming and always wears nice socks. The dude has his
Speaker 2: shit together, you could tell.
Speaker 5: But when I was in a school. We were just
Speaker 5: taught the endothelium was just the lining of the blood
Speaker 5: vessel Snow, big deal. We now know that the endothelium
Speaker 5: possesses these engines of bleeding and clotting. In fact, twenty
Speaker 5: years ago, Gordon Bernard and I and a lot of
Speaker 5: other investigators came up with a drug for sepsis. Sepsis
Speaker 5: is a systemic infection, you know, like you can get
Speaker 5: strip sepsis or staff sepsis. Different bacteria or virus can
Speaker 5: cause this, and we take care of this all the
Speaker 5: time in ICU, and the treatment the first ever FDA
Speaker 5: approved drug for sepsis was a way of calming down
Speaker 5: the endothelium because people were developing thousands and thousands in
Speaker 5: their body of these microclots small blood clots. Well, in COVID,
Speaker 5: the endothelium is activated and so the patients developed both microclots,
Speaker 5: small clots and capillaries and also large clots. There's an
Speaker 5: excess of what we call DVTs or deep venus thrombosis
Speaker 5: and pumlary imbali blood clots in the legs and in
Speaker 5: the chest.
Speaker 2: So again, as we covered in surgical angiology, COVID can
Speaker 2: wreak some havoc and cause blood to clot in both
Speaker 2: the big plumbing and the narrowest plumbing of the body,
Speaker 2: like a hair ball and a cat or a fat
Speaker 2: berg made of baby wipes stopping up the sewer that
Speaker 2: you definitely do not want there.
Speaker 5: So the vascular nature of COVID is both macro and micro. Now,
Speaker 5: the macropart you have to get a blood thinner, like
Speaker 5: you know, something that things your blood out for three
Speaker 5: to six months to keep you from dying of a
Speaker 5: stroke or a pulman or emblast. But the micro clots,
Speaker 5: the micro clots are not that large. They're tiny in
Speaker 5: the capillary beds. And imagine if you got those in
Speaker 5: your head or your kidney or your pancreas, you might
Speaker 5: develop diabetes or kidney dysfunction or heaven forbid, in your
Speaker 5: head you develop cogniti difficulties, so that your neuropsychological tests
Speaker 5: would show memory deficits, processing speed problems, executive dysfunction, and
Speaker 5: so part of the disease of lung covid is this
Speaker 5: vascular business. And then the other part, though, is that
Speaker 5: the immune system turned on. So in the head it's
Speaker 5: not just about microclots in the capitoy beds. It's that
Speaker 5: if you take your neurons in your head, the neurons
Speaker 5: are supported by these cells astrocytes called glial cells, astracyites, microglia,
Speaker 5: other types of cells, and those cells do get diseased
Speaker 5: in long COVID, and when they're disease, they essentially don't
Speaker 5: provide the sort of nurturing environment for the neurons. Think
Speaker 5: of a plant that needs good soil and water, and
Speaker 5: all of a sudden you remove the soil in the
Speaker 5: water and get it too dry, and the plant is
Speaker 5: going to wither. In this case, the plant the leaves
Speaker 5: the plant of the neurons, and the soil and the
Speaker 5: water are the glial cells providing the nurturing environment for
Speaker 5: the plant.
Speaker 2: That makes sense, Yeah, yeah, totally. That's a great analogy.
Speaker 2: You know, you mentioned your med school in Chilane and
Speaker 2: how long you've been doing this, which, by the way,
Speaker 2: you look amazing. What exercise routine do you do? What
Speaker 2: do you do?
Speaker 5: I'm a swimmer. I do trithlons. I'm swimming, biking and
Speaker 5: running and then doing whatever my wife says to make
Speaker 5: sure I'm not crazy at.
Speaker 2: The end of the day, whatever you're doing, I'm like, Okay,
Speaker 2: I guess I got to start doing triathlones. But I
Speaker 2: wanted to ask a little bit about if you ever
Speaker 2: anticipated sort of being a physician during a pandemic of
Speaker 2: this scale. Was that something that they ever talked about
Speaker 2: in med school? Is that something that you knew was
Speaker 2: possibly on the horizon? Are you looking at bird flu
Speaker 2: likere we go again?
Speaker 5: Yeah, this is the public health question, you know. When
Speaker 5: I was at Tulane in medical school, I also got
Speaker 5: a master's in public health from the School of Public
Speaker 5: Health and Tropical Medicine there at Tulane, and so my
Speaker 5: mind was already being trained to think on large scale.
Speaker 5: And when the Haiti earthquake happened, we started going down
Speaker 5: to Haiti for ten years trying to provide better public
Speaker 5: health there or vaccination programs, dental care programs. My three
Speaker 5: daughters came with us to do this work. So my
Speaker 5: mind was already on global health. And right now we
Speaker 5: have studies going on and subsiharent Africa, Malawi, Rwanda, Kenya
Speaker 5: to try and treat respiratory failure better in l miic's
Speaker 5: lower middle income countries. So yes, I think I was
Speaker 5: already trained to think on a global scale regarding illness,
Speaker 5: and I didn't know that obviously I'd ever be able
Speaker 5: to serve others in an absolute pandemic. But we've been
Speaker 5: dealing with epidemics for many years. And what was one
Speaker 5: interesting thing, by the way, Ali, is that we for
Speaker 5: twenty five years were studying the brain during critical illness.
Speaker 5: That one of our expertise was that we came up
Speaker 5: with tools to measure delirium in the ICU, and delirium
Speaker 5: became the epidemic within the pandemic of SARS Kobe two.
Speaker 5: So many patients had ripped roaring delirium that my inbox
Speaker 5: was just filled up. And at one point in twenty twenty,
Speaker 5: we launched a study by Twitter, believe it or not,
Speaker 5: and we got two thousand, one hundred patients in ic
Speaker 5: US around the world enrolled in this delirium study. And
Speaker 5: what we found was that the main drivers of the
Speaker 5: deliri and these COVID critically ill patients was under use
Speaker 5: of family and overuse of benzodesepines and heavy sedatives. And
Speaker 5: we created, unknowingly an environment with a virus that was
Speaker 5: already hitting the brain was made so much worse by
Speaker 5: us not allowing the families to be there and by
Speaker 5: giving too much sedation. And it's just a very hurtful
Speaker 5: thing for me to think that I was a part
Speaker 5: of that, and I was complicit. So we used the
Speaker 5: data though to undo that and to make absolutely certain
Speaker 5: that we opened the ic US back, got the families there,
Speaker 5: and didn't use such heavy sedation going forward.
Speaker 2: But what were you supposed to do it's a very
Speaker 2: contagious disease.
Speaker 5: Well, I've said that in many talks that you know,
Speaker 5: we were doing the best we could with the light
Speaker 5: we had at the time. We didn't have vaccines, we
Speaker 5: didn't have enough ppe, so we took some steps to
Speaker 5: protect ourselves and others. They were, though, injurious to the patients,
Speaker 5: and it's hard for me to consider it, but it
Speaker 5: did make it worse for people, and I don't ever
Speaker 5: want to live that way as a doctor.
Speaker 6: Again.
Speaker 5: That's why I wrote Every Deep Drawn Breath. I mean
Speaker 5: this book I call eddb Every Deep drum Breath, and
Speaker 5: the stories and there are all human stories. It's narrative nonfiction.
Speaker 5: And what I did was I said, Wes, just let's
Speaker 5: take these people's stories show how these people changed the
Speaker 5: way that we do medicine for the better and give
Speaker 5: them the kudos and the thanks and the glory that
Speaker 5: they were contributing to humankind in such a beautiful and
Speaker 5: selfless way.
Speaker 2: And again his book is called Every Deep Drawn Breath.
Speaker 2: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine
Speaker 2: in the ICU. At what point did you say I
Speaker 2: need to share some of these stories in a book,
Speaker 2: And also how did you end up writing and also
Speaker 2: being an I see you physician?
Speaker 5: Yeah? You know, for twenty five years as a doctor,
Speaker 5: I kept up with my patients and I have my
Speaker 5: cell phone on my card and they call me. They
Speaker 5: don't abuse it, and we've got I've got great friendships
Speaker 5: with these people. What I realized early on as an
Speaker 5: ICU doctor was that my job is not just to
Speaker 5: get you out of the ICU. If I get you
Speaker 5: out of the ICU and you can't go back to work,
Speaker 5: I had a young woman once point her finger at
Speaker 5: me and say, doctor, really, you didn't do your job.
Speaker 5: She was back in the clinic. She goes, I can't
Speaker 5: pick my kids up, I can't go back to work.
Speaker 5: My brain doesn't work and I was so convicted that
Speaker 5: day and I said, you know what, I'm going to
Speaker 5: use your telling me that to make a difference going forward.
Speaker 5: So survivorship is a critical piece of all of these illnesses,
Speaker 5: and so eddb every deep drawn breath is all about
Speaker 5: me saying and us saying to the world we have
Speaker 5: an entire person here and their whole life matters is
Speaker 5: going forward. It can't be that when I finished giving
Speaker 5: you a packed slovid course or a course of some
Speaker 5: therapy you're getting in the ICU, that I'm like washing
Speaker 5: my hands of you and saying, Okay, I'm done, have
Speaker 5: a nice life, and you go out there and suffer. No.
Speaker 5: So we've actually used the funds from the book to
Speaker 5: hire social workers. That woman that I told you I
Speaker 5: met with yesterday, her mother and the young woman reached
Speaker 5: out this morning and we plugged her into our social
Speaker 5: worker that we pay for to help her. Because people
Speaker 5: need assistance like that and they don't have it. When
Speaker 5: they leave the hospitalization or other care, they have nobody
Speaker 5: to help them get by. So that's what we're trying
Speaker 5: to do, is provide that public health assistance.
Speaker 2: Oh that's amazing. We also donate to a charity of
Speaker 2: your choosing a related charity. Do you have one top
Speaker 2: of mine or do you want to look into it.
Speaker 5: Our center has people every day on support groups. We
Speaker 5: have local long COVID and post ic support groups every
Speaker 5: day and if people want to donate to our center,
Speaker 5: we will put all the money towards these patients support groups.
Speaker 5: It's the Critical Illness, Brain Dysfunction and Survivorship Center and
Speaker 5: then you can just find us at icedelirium dot org. Okay,
Speaker 5: I seeudelirium dot organ. We commit to you that every penny,
Speaker 5: if you tell us that's how you want it to
Speaker 5: be used, will go towards creating a community, a survivorship
Speaker 5: community where people can yell, scream, cry and get the
Speaker 5: social worker help that they need.
Speaker 2: That's so great. Okay, I'm going to lightning round as
Speaker 2: many as we can. Okay. Marcella mathis from Long Beach, California,
Speaker 2: currently residing in South Carolina. HI.
Speaker 7: This is Marcella And the question that I had I
Speaker 7: had just got over about of COVID for the second time,
Speaker 7: and how does the experience of COVID different individuals who've
Speaker 7: had multiple infections compared to those who've had it only once.
Speaker 2: So ask wonderful people what you were wondering, and yes,
Speaker 2: next week we're going to drop the part two to this.
Speaker 2: We're going to kick it off with an answer to
Speaker 2: Marcella's question and then dive in to all of the
Speaker 2: questions you submit. It about brain fog, if diet can help,
Speaker 2: advice for caregivers, variants and long COVID, how not to
Speaker 2: get duped by snake oil, what's to deal with pots, histamines, hormones,
Speaker 2: heart health, and how to treat your blood well, and
Speaker 2: some hope coming down the pike in the form of
Speaker 2: new research. You can find more info and studies linked
Speaker 2: at the Lincolner show Notes. There are also links to
Speaker 2: doctor Eli's book, Every Deep Drawn Breath, as well as
Speaker 2: his research. We are at Ologies on Blue Sky and Instagram.
Speaker 2: I'm at Ali Ward on both and again we have
Speaker 2: kid friendly episodes called Smologies. Wherever we get podcasts. You
Speaker 2: can submit questions for Ologists before we record at patreon
Speaker 2: dot com. Slash ologies Ologies Merch is available at ologiesmerch
Speaker 2: dot com. Thank you so much Aaron Talbert for admitting
Speaker 2: Theologies podcast Facebook group. Aveline Malick makes our professional transcripts.
Speaker 2: Kelly ar Dwyer makes the website. Nowell Dilworth is our
Speaker 2: scheduling producer. Our managing director is the Susan Hale. Jake
Speaker 2: Chafy edits and lead editor is of course Mercedes Maitland
Speaker 2: of Maitland Audio. Nick Thorburn made our theme music. And
Speaker 2: if you stick around to the very end of the episode,
Speaker 2: I'd burden you with a secret for my life this week.
Speaker 2: It's that I'm recording this. I'm in my pajamas in
Speaker 2: the guest room closet of my friend Katherine Burne's parents.
Speaker 2: I'm visiting them all in Austin for south By Southwest right,
Speaker 2: never been to south By. Very excited. Tonight are the
Speaker 2: iHeart Podcast Awards and Ologies is up for Best Science Podcast,
Speaker 2: and we're against like Stuff to Blow your Mind, Neil
Speaker 2: de grasse Tyson's Star Talk, Hidden Brain and Science Versus.
Speaker 2: We won in twenty twenty two for the Best Science Podcast,
Speaker 2: which was a thrill, but that was remote, so I
Speaker 2: didn't get to go in person. So I get to
Speaker 2: go tonight. We'll see if Ologies wins. I'm about to
Speaker 2: shower and put my hair in a ponytail, try to
Speaker 2: look normal on a red carpet, and I will update
Speaker 2: you If Ologies takes home a trophy, I'll let you
Speaker 2: know at the end of part two. And thank you
Speaker 2: Dallas and Dudah Burns for the hospitality. I'm off to
Speaker 2: go put on a velvet suit. Okay, byebye pacadermatology, homeiology,
Speaker 2: r doo Zoology, lithology, technology, meteorology, old paratology, anthology, seriology, selenology.
Speaker 7: It's been eighty four years.