Post-Viral Epidemiology (LONG COVID) Part 1 with Wes Ely
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Oh, hey, it's your aunt who always carries Kleenex, Allie Ward. And this episode is a long time coming, just about five years. So March 11th, 2020, it's been called the day that everything changed. I'm sure you remember a little something called the SARS-CoV-2 virus started to make its debut globally and COVID-19 pandemic became a part of our lives and history.

Some people more than others, it's woven into your history as worldwide studies estimate that the virus has caused directly or indirectly the deaths of up to 36 million people. So if you have had COVID and you bounced back quickly, you're lucky. If you haven't had it, you're lucky. If you've had it, you still feel weird. Sit down, let's discuss. And please do send this episode around to anyone who could use it. I know long COVID is on a lot of our minds and it's hard to find the information that you need.

this is exactly what I've hoped that it would be. Okay. So in this part one, we're going to learn how to know if you have long COVID, the symptoms, why it happens, where in the body it happens, how it feels. And then next week, we're going to talk more about treatments and advice, if you think you have it, and some really wonderful firsthand experience from some friends and scientists I know who have struggled with long COVID, including some great advice for caregivers. So this expert

Oh, it's so good. So he got his MD from Tulane University in New Orleans, Louisiana. He is now a professor of medicine at Vanderbilt University Medical Center. He has published over 450 peer-reviewed papers. He's been cited over 100,000 times. Somehow...

He also found time to author a critically acclaimed book. It's called Every Deep Drawn Breath, and it's about developing treatment for patients in the ICU that will improve their lives after illness. We'll talk about it. His lovely spouse, also a pathologist. This guy lives in Brissett. He's also a pulmonologist. Now, when it comes to long COVID, he is one of the most highly respected and sought after specialists, and I was thrilled when he agreed to let me barrage him with all of our

questions. We're going to get there in a sec, but first, thank you to all the patrons at patreon.com slash ologies who sent their questions for this episode in and who support the show for as little as a dollar a month. Thank you to everyone out there listening to Smologies, which is our classroom safe, kid-friendly, shorter spinoff show. You can find Smologies wherever you get podcasts.

Thanks also to everyone out there wearing Ologies merch from ologiesmerch.com. Also for $0, you can help just by leaving a review. I read every single one of them. Here's one just left by Yodelbat who wrote, if you love hearing someone gush about a passion, then you will have a good time. And although, okay, this episode seems like, oh Lord, COVID still, but this expert is so passionate about it and so great at his job and so personable. And it lays out how, yeah,

COVID still, especially for some people. And also, I could have never imagined how brightly enthusiastic and compassionate he could be. Absolutely honored to have met him. So tuck in, breathe deep if you can, and let's load you up with true facts about what long COVID is, how it differs from other post-viral illnesses, variants and long COVID risks,

Why people say it's not real, advice for caregivers, symptoms to look for, changing opinions in medicine, similarities to HIV, treatment options, autoimmune issues, POTS, post-exertional malaise, the best way to prevent long COVID, how many spoons does it take to change a light bulb, and why I need to start swimming, and more with

physician, professor, author, researcher, pulmonologist, intensivist, and post-viral epidemiologist, Dr. Wes Ely. My name is Wes Ely, and I'm a hymn, and I am so thankful to be here today. I'm so excited. We've wanted to do this for a long, long time. And long COVID is a tough one because

You're not quite sure what experts are super up on the latest research. The biggest question I feel like I get or I hear is, is long COVID real? Which is an interesting thing to say about like a condition, but how often does the veracity of long COVID come up in your work? Allie, that's a great question and so important because we start at the basics. Do we believe our patients? And I'll admit right off the bat, I'm a good person to ask because I didn't.

And I was wrong. And I had to learn and wake up and say, wait a minute, Wes, look in the mirror. You're a fraud. You don't think this is real, but it is real. And, you know, I came to it naturally, if you really want to know, because I'm a product of traditional academic medicine practices.

And we were not taught in medical school that chronic fatigue syndrome was real. We were taught that it was perhaps made up in people's mind. And then for 25 years, I studied the post-intensive care syndrome, which is when people come into the ICU and get super sick and leave with head problems and body problems.

And I just thought that COVID patients complaining months after COVID was that. And I just thought, oh, these people don't even realize it's just post-intensive care syndrome. And PICS or post-intensive care syndrome, it's a term that was coined in 2010. And it's defined as this new onset or worsening of impairment in physical, cognitive and or mental health that arises after the ICU and persists beyond hospitalization.

hospital discharge. So PICS symptoms can include fatigue and muscle weakness, anxiety and depression, and cognitive impairment at a year after an ICU stay and longer than that. And among surgery patients, it's more common for those who have had an unplanned urgent surgery than elective expected ones. So doctors have been hip to PICS, post-intensive care syndrome, in ICU patients for at least 15 years.

And after recovering from an inpatient stay with COVID, it seemed to align with PICS. But then they started calling and said, wait a minute, I was never in the hospital. And I said, what? They said, no, I've never been in the hospital and I can't walk right. And I can't, my heart rate's too high and I can't think clearly. And so I had to say, wait a minute, Wes, this is not what you thought it was. There's something else going on. How far into the pandemic did that switch happen for you?

It happened around, not too late, obviously it was pretty early, but my doubting days were all the spring and early summer of 2020.

And already by June or July, especially July and August of 2020, we had people contacting our research office saying, can you help us? And that was when I had real live conversations with people who said they were long haulers who had never been hospitalized, had only been outpatient, and were having these tremendous life-changing difficulties. So I'd say four to six months into the pandemic, I was absolutely convinced it was real. But those first two or three months

Even on Twitter, I was really confused about what was going on. What makes long COVID different from just post-viral malaise? How is long COVID different from your system just trying to reboot and say, oh man, that sucked, but I'm getting better? Yeah, I'd say two big things. Let's talk individual patients' differences and then epidemiologically at the population level. Individually,

Post-viral illness, after a bad flu, you feel bad for a couple of weeks. But what happens with patients who experience long COVID is that they oftentimes have a honeymoon. They don't always, but a lot of times they'll have a two or three month, 90 day honeymoon. And then they just, wham, they just get hit with these cognitive and body disabilities that...

get worse and worse, and they really get incapacitated and disabled. So that's on the individual level. It's that this is way more pronounced than just a post-viral malaise, just a few weeks of recovery. This is something that's going on weeks and months, and there's no recovery in sight on their own. And then on the epidemiological level, we've never had

a post-viral, like a post-flu epidemic of this proportion. So now we just have millions of people with this problem societally and as a whole globally. So we've never had this many people to study an IACC, infection-associated chronic condition, which is what we call this now. It's a disease state.

Again, the term for this is now IACC, that's infection-associated chronic condition. And no matter what the initial cause, an IACC tends to cause severe impacts to quality of life. It impacts more female patients than male. It involves neurological or immunological pathology, and it can affect a bunch of organs. So IACC doesn't have to be long COVID specifically. IACC is infection-associated chronic condition.

But long COVID is an IACC. Just like how not all succulents are cacti, but all cacti are succulents. Long COVID is an IACC. Not all IACCs are long COVID. Yes, this is a disease state and it is real. What is it about COVID itself that...

has a tendency to, or rather has the possibility to create long COVID. You know, is there something about the virus itself? Is it that it's a coronavirus? Is it the spike proteins? Why are we seeing so much long COVID, but not long influenza A or long strep throat or something?

Yeah, well, there is long influenza. There's the pandemic of 1918, the Spanish flu had post-viral illnesses. And so for over 100 years, we've known these exist. And just a quick recap on the 1918 flu pandemic. This caused 50 million deaths globally. And at the time, there was obviously no vaccine.

And according to a recent paper titled, An Unwanted but Long-Known Company, Post-Viral Symptoms in the Context of Past Pandemics in Switzerland and Beyond, doctors in 1919 reported that the duration of recovery from this flu, the 1918 flu, varied considerably among patients. And it was often a desperately slow recovery, even in mild cases. And it continues that patients suffered from general weakness, exhaustion, sometimes a

acute psychosis or severe nervous depression, which delayed their recovery further. And in addition, the paper says persistent heart problems were the main cause of long recovery times in a large number of cases. And that was about, again, the 1918 flu pandemic.

We also have a three-part ADHD episode with expert Dr. Russell Barkley, and he mentioned that a big spike of kids who survived the 1918 flu were being diagnosed with what is now known as ADHD. So big illness waves leave a lot of ripple effects in terms of symptoms. But post-flu conditions are a little different than long COVID because... What COVID does, COVID is a very vascular disease.

This is a viral illness that is extremely vascular. So the endothelium of our blood vessels gets infected with this virus and the

It also does something to our immune system whereby it basically turns on a light switch with our immune system, which creates an immune mediated disorder in our bodies. And so these two things, the vascular nature of it and the way it turns on an immune mediated problem, which affects then the brain, the autonomic nervous system, the cardiovascular system, the GI system, so many different organ systems.

is something that becomes basically very dastardly for the human body. So if you heard the surgical angiology episode with the brilliant Dr. Sheila Blumberg about veins and arteries and our recent cardiology episode with Dr. Herman Taylor, you may remember how the endothelium lines the blood vessels and inflammation of that tissue can lead to injury of it and plaque buildup.

And remember that Dr. Taylor said that there are several thousand miles of these vessels in your body. They go to every remote part of you. And in that episode, Dr. Taylor explained why we don't want to treat the endothelium tissue like garbage.

And one reason is to protect the veins and arteries and root to our hearts. We're going to get right back to Dr. Ely in a minute or two, but I want to really quick refresh your memory with a clip from Dr. Herman Taylor's cardiology episode we just did, where he explains how those endothelial tissues inside your veins work or don't work. So let's have a quick listen to that. There's a certain head of pressure that's needed in the heart, but it can't be too much. If it's too much,

Then what can happen is those arteries that are so vital to the heart survival become damaged. The lining inside of them called the endothelium, that thin lining that allows for the exchange of oxygen and nutrients and so forth.

is so very important. If it becomes damaged and starts to dysfunction, that allows all sorts of badness like cholesterol accumulation, the formation of what we call fatty streaks, which are just, it's like a giant oil slick on a road where you have cholesterol gathering, breaking through the barrier that should be intact. That cholesterol then is being consumed by cells that

from the body that are designed to protect the body against invaders. But they come in, they engorge themselves on the cholesterol, they break down and form debris, it causes inflammation. And there's this cascade of events that then leads to the body trying to contain it by forming a plaque.

over the top, a very fragile covering over this whole mess, right? And that contains the damage for a while. And it could be years. This whole process can take years in development. In fact, we see some of these changes I'm describing in the autopsies of soldiers who are 18, 19 years old. You can see the very beginnings of this process. Anyway, that type of damage can be initiated by pressures that are too high.

That then sets up a situation where that plaque could erode or rupture. And remember, that plaque is like spackle over a moldy wall. Exposing all of that garbage to the blood passing by, which sort of sees it as this disruption in the artery. Mm-hmm.

and then sends all sorts of things to fix this break in the artery. Platelets, which you remember from high school biology, are mainly intended to stop you from bleeding, right? They form a clot to close a cut you may have or bruise. But in this case, the platelets, which are like, think of these tiny pieces of Velcro, they come to the site where all of this has happened,

And they stick to each other as well as sticking to the site. And also, as we covered in the surgical angiology episode, it's been estimated that the human circulatory system would stretch out to be over 95,000 kilometers in order to pump more than 75 liters of your blood every day.

By the way, that's 60,000 miles and 2,000 gallons if you are American. Now, as for COVID and clotting, a 2023 study, Risk of Thrombosis During and After SARS-CoV-2 Infection, Pathogenesis, Diagnostic Approach, and Management in the Journal of Hematology Reports says that COVID-19 increases the risk of thromboembolic events, especially in patients with severe infections requiring intensive care and cardiorespiratory support ventilation.

And COVID-19 patients with these clotting complications have a higher risk of death. And if they survive, these complications are expected to negatively impact their quality of life. So COVID increases the risk of blood clots. And the worse your case of it, the more at risk you are for those blood clots. And it also says that recent data show that the risk of thromboembolism remains high months after infection.

So COVID ups your chance of clots and data show that it can infect coronary vessels. So how do you not get blood clots and thrombosis?

Never a bad idea to avoid getting COVID. Remember, get your boosters. Don't be afraid to mask up because a blood clot is way scarier than a weird look from a stranger, in my opinion and my experience. Did I fly three days ago and was I the only person I saw on the plane wearing a mask? Sure was. Do I give a shit? No. I don't want that. But back to Dr. Ely. Why is long COVID such a bitch?

Let's talk a little bit about how it might be different, though, than other viral illnesses. Would that be okay? Yes, yes. Get into it. Okay. Like, if you think about diseases like HIV, you know, HIV is a global viral problem that creates a chronic illness. And what the HIV virus does, which is so genius of the virus, is that it

Figures out a way to go undetected in the body. So it hides itself in the body in a dormant state and inculcates itself into the genome so that where the virus is hanging out, instead of those cells dying, it actually promotes the life of those cells and can even increase their cell turnover. So thereby doubling and tripling and quadrupling the virus copies itself. So HIV hides in specific cells and then encourages just those cells to make more of them.

It's kind of like a Ponzi scheme. So thank goodness COVID hasn't learned that. COVID doesn't know how to do that. And the main two theories of long COVID, it's probably a little of both ends, but in fact, we just published a paper two days ago on viral persistence, which is one leading theory. But the other one is not just that the virus is still hanging around causing problems, but that while it was here, it did something to activate the immune system, which may need

immune modulation down the line for therapies to dampen down and either turn off or turn down the disease state of long COVID. And so what the common theory or the common thought is, is you get COVID, your immune system goes, what is this? What's going on? And then instead of getting better from the virus, your immune system just goes, whoa, I'm still out of whack and just keeps firing things off. Is it tend to just be thought of under the umbrella of autoimmune diseases?

Yeah, generally, you can put this in a camp of, is this an ongoing infectious problem, infectious disease problem, or is it an ongoing immunological disease? You might think like rheumatoid arthritis or lupus. And in fact-

We now know through millions of patients studied in Germany, the UK, the United States, in the very large cohort studies, that there is a doubling or a tripling of these autoimmune diseases like lupus, rheumatoid arthritis, Sjogren's syndrome. And so we know that that happens. Diabetes as well, oftentimes is thought to be an immunological disease. And there's a very clear cut risk of getting acquired diabetes in long COVID. Wow.

And we have a great two-part diabetology episode with self-described diabetic diabetologist, Dr. Mike Natter, which explains the different ways that a pancreas can crap out on you, causing type 1 or type 2 diabetes. But yeah, if your body sees its own tissue as the enemy, like with MS or psoriasis or lupus or rheumatoid arthritis, et cetera, then it's a really delicate operation to

calm your own shit down. And the two main thoughts are that long COVID is this continued attack by the virus plus continued attack on yourself by your own immune system because of the virus. It's a real why are you hitting yourself situation. It's infuriating.

Now, if the virus, say, was an arsonist, then your immune system is like a firefighter who is trying to put out the fire, but who is blasting you so hard with a fire hose that you're drowning. At least that's a hypothesis. We've learned a lot, but there's a lot more to learn. What about other...

diseases kind of under, or rather, what about other autoimmune diseases that might be sparked by a virus like MS or chronic fatigue syndrome? Or I always say this wrong. I think it's Wieland bar, but I'm not, or Wieland. Guillain-Barre. Guillain-Barre. Guillain-Barre? Yeah. Guillain-Barre. Always say that wrong. And then I always triple guess myself. It's

It's French. It looks like Guillain-Barre, but it's pronounced beret-like as Guillain-Barre, and it sucks. Guillain-Barre can arise after an illness or a surgery, and symptoms can include muscle weakness, starting in the hands and feet, and progressing even up to the facial and eye muscles and the respiratory system, and can even be fatal. But back to COVID. But

But is long COVID similar to those at all that could be kind of ignited by a virus or an illness? That's a really good analogy. And in medicine, that is essentially what we think happens. You know, these diseases like after a viral illness, I have a friend who just this past December got a viral illness, upper and lower respiratory tract infection, and then within a week started feeling very sick.

weak in her hands and feet and then ascended and she ended up on a ventilator. And that was a post-viral onset of Guillain-Barre. And she got better. And we gave immunoglobulin for that disease process. And we know some of these are well treated by therapies like immunoglobulin, but others aren't. And unfortunately, long COVID hasn't been proven to respond to different types of disease treatments that we've used in other diseases like

systemic steroids or immunotherapy or plasmapheresis. Those things haven't helped patients in concrete manners. - And just a few options when it comes to therapies. There are systemic corticosteroids that can tamp down inflammation in your body and those are delivered either orally or through injections. There's also something called plasmapheresis, which involves a blood draw and then the blood is separated into its red blood cells, white blood cells and its plasma.

And then the plasma is delivered to the patient intravenously. And according to a very recent study, which came out less than two weeks ago, it was titled Plasma Exchange Therapy for the Post-COVID-19 Condition, a Phase II Double-Blind Placebo-Controlled Randomized Trial. It was in the journal Nature. Found that while plasma exchange was safely tolerated, it did not lead to any discernible improvement of the long COVID in this clinical trial.

Unfortunately. There are individual people who say they've been helped, but we don't have well-done randomized controlled trials showing that that's a reproducible benefit for our long COVID patients. Why do you think COVID is like, nah?

Well, sometimes immunoglobulin is hitting a specific antibody that's been produced that's causing the problem. And we don't have immune markers like that for long COVID. In fact, there are no really beautifully proven blood tests and or biomarkers for long COVID yet. Now, there are some coming out. I don't want people to say, wait a minute, he doesn't know about, I know about research that's coming down the pipe, but there's nothing commercially available and on a large scale that is yet mainstream. Yeah.

So there's promising research, but no easy long COVID tests you can take. But there's a lot of people in labs around the world that we're learning that hopefully we will have a biomarker. I was on the committee of the National Academy of Sciences, Engineering and Medicine, NASEM, where we helped...

redefine long COVID. Maybe we'll get to that later. Oh, we will. And that was one of the caveats in our report after working for over a year on this project was that we need to update our long COVID definition every couple of years because the science is fast and furious and we don't want to be out of date and irrelevant.

Well, that's a perfect time to ask, what does long COVID look like? What kind of symptoms do people have? If right now, as we're speaking, there's not a commercially available test for long COVID, you can't roll into your doctors and be like, hey, yes or no, do I have long COVID? What kind of symptoms are we seeing that we're grouping together under long COVID? Yeah.

Sure. Let me, can we just use real life examples that I have permission to share? I won't say their names, but these people have given me written sign permission to share their stories generally, even their names, but I'm not going to do that today. But how about a young man in his mid twenties who is an engineer working with experiments to make, for example, electric cars better and faster and or surgical equipment better and more safe and ticking along a very good athlete, riding, you know,

2000 feet in elevation for six hours at a time and gets COVID, has a honeymoon, gets a little better, but within 60 to 80 days starts getting hit with extreme fatigue, has a tremendous difficulty riding his bike, then notices at work he can't finish his experiments cognitively and just says, you know, now even a year or two into this, washing his car,

We'll wipe him out for a week. Yesterday, I went to the home of a young woman who was suffering from long COVID, a teenager. And she knows that I have permission to share her story as well. I met with her in her bedroom with her mother. And she said that she will go out of her bedroom one day in a week, perhaps, has been in that bedroom, bed bound, as she said, for over a year.

and has had to drop out of school and has no hope. I was trying to build hope for her. I want these people to never lose hope because we're not going to stop until we get answers for them. But she told me this great story, which I think is relevant for your listeners, that she operates by the spoon theory. And I have this many spoons in my cup, and this activity is going to take two of my four spoons or two of my six spoons, and I'm going to have to stop. And she said, after we finished this interview, Dr. Ely, Dr. West,

I will be in the bed for four days. She sat up, she was exuberant. She talked to me the whole time. She said, this is taking everything I've got. I will use all six of my spoons for this interview, which would last an hour, an hour and a half. And I felt terrible after hearing her say that. And she said, it'll take me four days to get myself back after this. And I'm checking in with her later today to make sure she's doing okay. But that's what they're suffering from is this massive amount of PEM or post-exertional malaise.

Or like the first patient I told you, tremendous cognitive difficulties, even at a young, very otherwise brilliant mind, life-changing. Mm-hmm.

So this spoon theory was coined in a 2003 essay by American writer Christine Miserandino. And folks who are dealing with chronic illness sometimes refer affectionately to themselves as spoonies. And for more on chronic illness and disability, we put out a great disability sociology episode for Disability Pride Month last July, featuring the legendary Dr. Gwen Chambers. And now a

quick background on ME-CFS. So the CDC defines it as a serious and often long-lasting illness, and it keeps people from doing their usual activities. It makes physical and mental exertion really difficult. Symptoms include trouble thinking, severe tiredness, and there's no known cure. Care usually means treating the symptoms that most affect a person's life. Would this be

classified under ME-CFS or is that a different kind of label on a different disease? But I feel like my friends who have had long COVID talk a lot about that. And, you know, I hear a lot about that post-exertional malaise being completely wiped out. Um,

Have you heard of the physics girl, Diana Cowern? Yeah. So she's a friend of ours too. And she's getting a little bit better, which is great. But ME-CFS is something that I hadn't heard about until Friends had long COVID. Where does that, where's the Venn diagram of that?

Yeah. Thank you for bringing up Diana's story. She's a beautiful person and her husband as well, an amazing caregiver and a good example of how the caregivers are a big part of this story because the caregiver burden is immense. We're going to hear more firsthand advice for patients and caregivers from Dr. Raven Baxter and Diana and her husband, Kyle, in part two. But first, we're going to donate to a cause of Dr. Elyse Joyce. And he pointed us toward Critical Illness

Brain Dysfunction and Survivorship Center, which is composed of an interprofessional group of physicians and nurses and psychologists and biostatisticians, epidemiologists and more who work with patients who are or have been critically ill and are at risk for long-term cognitive, functional and neuropsychological impairments. Now, Wes is the center's co-director and you'll learn a little bit more about how ologies can support their patients in next week's episode. Thanks to you and thanks to sponsors of the show.

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Okay, back to long COVID. And Wes and I were talking about caregivers and how next week we're going to hear more advice from them in talking to Kyle, the husband of physics girl, science communicator, Diana Cowern, who's been suffering with long COVID and ME-CFS since 2022. And last June, Kyle posted in honor of the couple's second wedding anniversary, detailing that, quote, Diana has been 100% bed bound with long COVID. She lays in a dark room, earplugs in,

with only her mind and simple thoughts to keep her company. No, she can't talk, watch TV, read books, listen to podcasts, or even music. She can't tolerate visitors. Even the faint smell of laundry detergent makes her sicker.

It's a kind of locked in hell, he writes, and there's currently no cure for this disease. Thankfully, Diana's condition has improved modestly in the last few months, but it's still extreme ups and downs. And my heart goes out to her and to all of those suffering. ME-CFS, or myalgic encephalomyelitis, chronic fatigue syndrome is the formal name of what we used to just call chronic fatigue. And these Venn diagrams are very overlapping.

This young woman I met with yesterday thought for a year and a half that she just had

ME/CFS and everybody was dissing her in formal medical evaluations about the possibility of long COVID. And when I reviewed her history and her actual documented times when she had positive COVID tests, her story fits perfectly for long COVID. And her symptom complex is broad enough that I think in her example, the ME/CFS fits underneath the umbrella of a larger diagnosis of long COVID.

Many patients would tell you that ME-CFS is part of their long COVID disease state. Others might argue with that characterization. But for example, as a scientist, as a physician scientist, I'm working with a lot of people on a large trial that we are now enrolling into called Reverse Long COVID, RVLC, NIH-sponsored. And we use ME-CFS drugs.

tests and symptom batteries as part of our measurements to see what our intervention is doing or not doing. And it's a double-blind placebo-controlled trial, so I can't tell you anything about the results as of yet. And we'll be doing this trial for several years.

Okay, so long COVID can cause ME-CFS in that inflammation in the brain coupled with fatigue may be diagnosed as ME-CFS and that ME-CFS could be long COVID or it could be another AICC, infection associated chronic condition.

But my point to you is that I absolutely believe that patients who suffer long COVID meet the criteria of ME-CFS. And if ME-CFS is new in onset after the COVID pandemic, many of those patients actually have long COVID or both.

And you said there's no test as of now, but as a doctor, you're very patient-centered. And you wrote a whole book about how the way that we look at how we treat patients is

needs to shift a little bit. And, you know, you don't hear a lot of doctors being like, I went to a patient's bedside and talked to her for a while. Like it doesn't, I feel like that doesn't happen very often. How do you approach this kind of care, especially for a disease that is still, our knowledge is still developing and you might be the fifth doctor that someone's seen because no one believes them. What's your philosophy and how to care for patients with this?

All I can say, Allie, is that a lot happens in my mind when you ask me that question, but I just approach it on my knees. And what I mean by that is actually on my knees, you know, kneel down before this person because I am there to serve them and to try and make them big and me small. And by that, I mean that there's nothing I can ever do.

to earn the privilege of being with people who are suffering in this regard. And our patients who are suffering with long COVID have been through so much and not listened to that the way I want to start this relationship is to listen. I want to hear who are you? How are you suffering?

What makes you, you? I start oftentimes by simple questions like, can you just tell me, I call them Ely's four questions. What are your favorite hobbies, your favorite music, your favorite food, and your pet's names?

Because once I know these things about people, you know, that they love Bob Dylan and, you know, they love Chinese fusion and their dog's name is Bacchus, the God of wine. And their favorite hobbies is that they work on cars in their spare time or something. Then I have a, I go, oh my gosh, this is an entire person, mind, body, and spirit. Wes, never allow yourself to think of this person as a diseased person.

heart or kidneys or stomach or brain. This is a whole person, Wes. How willing am I to dive into the chaos of this person's life and provide lifting and healing? And so that's where it all starts for me, Allie, is can we see how you're suffering, try and understand that? And I don't have all the answers for you, but I'm going to stay with you and we'll start this process together.

Do you have just like a years-long waiting list of people that want to see you? How do you decide who you see? I see who I can. And we love it. I'm an ICU doctor. I started at the bedside and I love taking care of critically ill people. And that was why I got it wrong at the very beginning with long COVID because we had all these COVID patients in the ICU on the ventilators. And no doubt they left with tremendously bad post-intensive care syndrome, PICS. But it's a really...

beautiful thing to be able to be let in. People let you into their life. There's no way I can earn that. I mean, they're allowing me into their life and it's a gift to me. So we have to do everything we can for these patients and make them feel heard. And they bring into the situation, not only the trauma of their body's disease, but the trauma of having not been listened to and having been shunned and turned away. And that's adding insult to injury. So that needs to stop.

If you suspect you have long COVID and you go to a doctor, how do you feel like doctors should approach this? If there are any doctors listening or if there's any patients who could have some kind of game plan, what is the arc of treatment or seeing a patient like in an idealized way? The first thing that the doctor, the nurse practitioner, the PA, the nurse, anybody needs to do is say, let me get rid of my

biases, get rid of my presuppositions and any judgments of you at all. I'm talking to the patient. I mean, you don't have to say this out loud. This is just a mental approach. And let me just see who you are and tell me your story. So I need to be a sleuth here. Let's understand, when did you get COVID?

Exactly. And what documentation do you have of that COVID? So let's see, you know, okay, in January of 2022, you got COVID. That was your second bout. Before that, you had no symptoms. But on the second round of COVID, you're telling me that in late February, eight weeks later, you got wham, hit. You couldn't go back to work. You were bed bound and you couldn't think clearly. Okay, that's a seven to eight week timeframe. That fits perfectly for the disease stable on COVID. Now tell me, how did your symptoms evolve? How did you get back to work?

What did you try to do to fix it? How did it get worse or better? And what have you tried since? And so it's just being a good history taker and a good listener and not thinking that we know. I'm not a Buddhist, but this great Tao Te Ching, number 65 in Buddhism says, the ancient masters taught the student to not know.

Because if the student thinks they know, they cannot be taught. But if you know, you don't know. So when you come to me with your complaints, I don't know how you're suffering yet. I have to suspend judgment and listen to you. And that's where we start. And all good clinicians should start with that. What have you seen...

as the most effective intervention for long COVID? I know we used to hear if you got COVID, you should exercise. That'll help. And now we hear maybe don't do that. But any tips for preventing getting long COVID?

The best evidence about prevention of long COVID is to not get COVID, obviously. And so that kind of sounds stupid, like a duh statement, but, you know, do what you think is right or what your doctor or healthcare professional advises you to avoid exposure and prevent.

If you have had multiple infections, you are clearly at higher risk for getting long COVID. And there are good data to say that either multiple vaccinations, completing a series and or not getting infected as many times are some of the protective factors.

Now, let me say on that, that I absolutely believe in vaccine injury. There's no question in my mind that people have gotten this disease state of a long COVID-like illness from the vaccine. And we have patients in our clinic who have vaccine injury and the symptom complex is basically identical there.

to what our long COVID patients have experienced. So I know that's true. And many people have said it's not true. And I think that's incorrect. So I want to acknowledge and know that the people who have vaccine entry have a voice here and that I'm hearing them and many others are hearing them as well. And what we hope, by the way, is that our treatments

For long COVID, we'll also help those with vaccine injury as well. So there's going to be hopefully an overlap in therapeutic approach here. So while some people's bodies react with immune issues after an actual viral illness, others might be triggered by an antibody in a vaccine, which is very unfortunate. And I myself have gotten five COVID shots. I've never had COVID, thankfully, knocking on wood, or a bad reaction. And vaccine's still the best way to prevent getting COVID.

COVID in the first place. Yes, I believe in vaccines. As I said earlier, I'm sorry for those who have vaccine injuries. Some of your listeners will have that. I'm not trying to disregard what you've suffered from that. But at a population level, no doubt the data are clear that being vaccinated lowers your risk of getting long COVID. Are there stats in terms of like the percentage of people that get a vaccine injury? Does it tend to be very slim?

Right. So that's why I say that vaccines are still the recommended. So if your doctor recommends for you to get a vaccine, you go get that vaccine. You're not doing it with no risk, but you're actually mathematically lowering your risk of long COVID, not increasing it. And that's the thing. So you could get a vaccine injury, but the chance of getting vaccine injury is so much less.

then getting COVID and then have a subsequent long COVID that the odds are in your favor. If you go with the vaccine route, I hate it that some people who do that will end up suffering vaccine injury. The numbers though are way different. It's not a comparable number. That's great to know. So I dove into prevention a little bit, but let's go back to treatment. So if somebody develops long COVID or any ICC infection associated chronic condition, we,

believe that the right approach is these people have to be listened to carefully and individually approached. So one person's symptom complex will be more GI and cognitively related. Another person's symptom complex will be more fatigue, PEM, and another person's symptom complex will be more POTS, postural orthostatic tachycardia syndrome. More on POTS in a bit. So that's the reason

that your listeners are probably frustrated right now. There's not any one blanket treatment, which is best treatment, because this treatment has got to be individualized. If you talk to the world's best clinicians in ME CFS,

who are excellent and caring doctors who take good care. They say it's always, I start with the individual. Bob and Sally may have very different approaches because I'm going to listen to what they've got. One person may need salt loading and volume loading to prevent them from getting hypotensive and extreme tachycardia. And another person doesn't need that at all, but needs an actual medication to control their heart rate. While a third person is really having tremendous GI symptoms and we're gonna have to work with

those symptoms rather than the cardiovascular symptoms. You also asked about exercise. Do you want to talk about that and how we've gotten mixed messages? Yeah, yeah. I would love that. Okay.

A great example of this individualization of treatment is, for example, that in post-intensive care syndrome, we rehabilitate people with physical and cognitive rehabilitation and they get a lot of benefit. And so at the beginning of long COVID, when we were just starting out

taking care of patients who have this new disease state, we tried those similar approaches and many of them got worse. And the reason is that their post-exertional malaise, which we think probably is related to mitochondrial injury, really couldn't tolerate those same sorts of ramping up of physical therapy approaches, which we had taken in the past. Ramped up, we mean Monday, this week is

is going to be less than next week and next week is going to be more than the previous and we keep ramping up in time. And those people got tremendously ill because we didn't approach it from an ME-CFS approach of post-exertional malaise. The same is true with cognitive rehabilitation, whereas

Patients years after an ICU stay who have essentially an acquired dementia can really get their brain back with brain exercises. In fact, we have several ongoing randomized controlled trials of brain exercises in people who have acquired dementia after critical illness. But our long COVID patients tell us that the brain exercises wear them out and make them have physical fatigue just from the brain exercises. So really, we have to take a fresh look

at these approaches and don't think it's a one-shoe-fits-all because it isn't. And that's one thing that really angers the long COVID community when we try and push onto them some treatment that worked in a different population. Right. You mentioned that it's a very vascular disease. Is that the vascular system sort of going haywire in different ways? Or is it the vascular system, it's the mitochondrial system, it's so many things affected? Right.

Okay, so let's talk about the vascular system for a minute. When I was in medical school, I went to Tulane Medical School back in the 80s. I'm old now. I'm 61 years old. You can see my gray hair. This dude appears to be maybe 50 tops. Even over like a Zoom call, he's the kind of guy who you can tell wakes up like early to go swimming and always wears nice socks. The dude has his shit together. You can tell.

But when I was in medical school, we were just taught the endothelium was just the lining of the blood vessels, no big deal. We now know that the endothelium possesses these engines of bleeding and clotting. In fact, 20 years ago, Gordon Bernard and I and a lot of other investigators came up with a drug for sepsis. Sepsis is a systemic infection. You can get strep sepsis or staph sepsis.

Different bacteria or virus can cause this. And we take care of this all the time in the ICU. And the treatment, the first ever FDA approved drug for sepsis was a way of calming down the endothelium because people were developing thousands and thousands in their body of these micro clots, small blood clots.

Well, in COVID, the endothelium is activated. And so the patients develop both micro clots, small clots and capillaries, and also large clots. There's an excess of what we call DVTs or deep venous thromboses and pulmonary emboli, blood clots in the legs and in the chest. So again, as we covered in surgical angiology, COVID can wreak some havoc and cause blood to clot in both the big plumbing and the narrowest plumbing of the body, like a hairball in a cat.

or a fatberg made of baby wipes stopping up the sewer that you definitely do not want there. So the vascular nature of COVID is both macro and micro. Now, the macro part, you have to get a blood thinner, like something that thins your blood out for three to six months to keep you from dying of a stroke or pulmonary embolus. But the micro clots, the micro clots are not that large. They're tiny in the capillary beds. And imagine if you got those in your head

or your kidney, or your pancreas. You might develop diabetes or kidney dysfunction, or heaven forbid in your head, you develop cognitive difficulties so that your neuropsychological tests would show memory deficits, processing speed problems, executive dysfunction. And so part of the disease of long COVID is the spascular business.

And then the other part though, is that the immune system is turned on. So in the head, it's not just about microclots in the capillary beds. It's that if you take your neurons in your head, the neurons are supported by these cells, astrocytes called glial cells, astrocytes, microglia, other types of cells. And those cells do get diseased in long COVID. And when they're diseased, they essentially don't provide the sort of nurturing environment for the neurons. Think of a plant.

that needs good soil and water. And all of a sudden you remove the soil in the water and get it too dry and the plant is going to wither. In this case, the plant, the leaves of the plant are the neurons and the soil and the water are the glial cells providing the nurturing environment for the plant. Does that make sense? Yeah. Yeah, totally. That's a great analogy. Um, you know, you mentioned your med school in Tulane and, uh,

how long you've been doing this, which by the way, you look amazing. What exercise routine do you do? What do you do? I'm a swimmer. I do triathlons. I love swimming, biking and running and then doing whatever my wife says to make sure I'm not crazy at the end of the day. Because whatever you're doing, I'm like, okay, I guess I got to start doing triathlons. But I wanted to ask a little bit about if you ever anticipated sort of being a physician during a pandemic of this scale, was that something that...

they ever talked about in med school? Is that something that you knew was possibly on the horizon? Are you looking at bird flu like, oh, here we go again? Yeah, this is the public health question. You know, when I was at Tulane in medical school, I also got a master's in public health from the School of

Public health and tropical medicine there at Tulane. And so my mind was already being trained to think on large scale. And when the Haiti earthquake happened, we started going down to Haiti for 10 years, trying to provide better public health there, vaccination programs, dental care programs. My three daughters came with us to do this work. So my mind was already on global health.

And right now we have studies going on in sub-Saharan Africa, Malawi, Rwanda, Kenya, to try and treat respiratory failure better in LMICs, lower middle income countries. So yes, I think I was already trained to think on a global scale regarding illness. And I didn't know that obviously that I'd ever be able to serve others in an absolute pandemic, but we've been dealing with epidemics for many years. And what was one interesting thing, by the way, Ali, is that

We, for 25 years, were studying the brain during critical illness. And one of our expertise was that we came up with tools to measure delirium in the ICU. And delirium became the epidemic within the pandemic of SARS-CoV-2. So many patients had rip-roaring delirium that my inbox was just filled up. And at one point in 2020, we launched a study by Twitter, believe it or not, and we got 2,100 patients

in ICUs around the world enrolled in this delirium study. And what we found was that the main drivers of the delirium in these COVID critically ill patients was underuse of family,

and overuse of benzodiazepines and heavy sedatives. And we created unknowingly an environment with a virus that was already hitting the brain was made so much worse by us not allowing the families to be there and by giving too much sedation. And it's just a very hurtful thing for me to think that I was a part of that and I was complicit. So we use the data though to undo that

and to make absolutely certain that we opened the ICUs back, got the families there, and didn't use such heavy sedation going forward. - But what were you supposed to do? It's a very contagious disease. - Well, I've said that in many talks that, you know, we were doing the best we could with the light we had at the time. We didn't have vaccines, we didn't have enough PPE. So we took some steps to protect ourselves and others

They were, though, injurious to the patients. And it's hard for me to consider it, but it did make it worse for people. And I don't ever want to live that way as a doctor again. That's really why I wrote Every Deep Drawn Breath. I mean, this book I call EDDB, Every Deep Drawn Breath. And the stories in there are all human stories. It's narrative nonfiction. And what I did was I said, Wes, just let's take these people's stories.

show how these people changed the way that we do medicine for the better and give them the kudos and the thanks and the glory that they were contributing to humankind in such a beautiful and selfless way. And again, his book is called Every Deep Drawn Breath, a critical care doctor on healing, recovery, and transforming medicine in the ICU. At what point did you say, I need to share some of these stories in a book?

And also, how did you end up writing and also being an ICU physician? Yeah, you know, for 25 years as a doctor, I kept up with my patients and I have my cell phone on my card and they call me, they don't abuse it. And we've got, I've got great friendships with these people. What I realized early on as an ICU doctor was that my job

is not just to get you out of the ICU. If I get you out of the ICU and you can't go back to work, I had a young woman once point her finger at me and say, Dr. Ely, you didn't do your job. She was back in the clinic. She goes, I can't pick my kids up. I can't go back to work. My brain doesn't work. And I was so convicted that day. And I said, you know what? I'm going to use your telling me that to make a difference going forward. So survivorship

is a critical piece of all of these illnesses. And so EDDB, Every Deep Drawn Breath, is all about me saying and us saying to the world,

We have an entire person here and their whole life matters going forward. It can't be that when I finished giving you a Pax Lovid course or a course of some therapy you're getting in the ICU that I'm like washing my hands of you and saying, okay, I'm done. Have a nice life. And you go out there and suffer. No. So we've actually used the funds from the book to hire social workers. That woman that I told you I met with yesterday, her mother and the young woman reached out this morning and we plugged her into our social worker that we pay for.

to help her because people need assistance like that. And they don't have it when they leave, you know, the hospitalization or other care, they have nobody to help them get by. So that's what we're trying to do is provide that public health assistance. Oh, that's amazing. We also donate to a charity of your choosing a related charity. Do you have one on top of mine or do you want to look into it? Our center has people every day on support groups. We have local

long COVID and post ICU support groups every day. And if people want to donate to our center, we will put all the money towards these patient support groups. It's the critical illness, brain dysfunction and survivorship center. And then you can just find us at ICU delirium.org. Okay. ICU delirium.org. And we commit to you that every penny, if you tell us that's how you want it to be used, we'll go towards creating a community of

a survivorship community where people can yell, scream, cry, and get the social worker help that they need. That's so great. Okay, I'm going to lightning round as many

As we can. Okay. Marcella Mathis from Long Beach, California, currently residing in South Carolina. Hi, this is Marcella. And the question that I had, I had just got over a bout of COVID for the second time. And how does the experience of COVID differ in individuals who've had multiple infections compared to those who've had it only once?

So ask wonderful people what you were wondering. And yes, next week, we're going to drop the part two to this. We're going to kick it off with an answer to Marcella's question and then dive in to all of the questions you submitted about brain fog, if diet can help, advice for caregivers, variants and long COVID, how not to get duped by snake oil. What's the deal with pots? Histamines, what's the deal with potting?

hormones, heart health, and how to treat your blood well, and some hope coming down the pike in the form of new research. You can find more info and studies linked at the link in our show notes. There are also links to Dr. Ely's book, Every Deep Drawn Breath, as well as his research. We are at Ologies on Blue Sky and Instagram. I'm at Allie Ward on both. And again, we have kid-friendly episodes called Smologies, wherever you get podcasts.

You can submit questions for Ologists before we record at patreon.com slash ologies. Ologies merch is available at ologiesmerch.com. Thank you so much, Aaron Talbert, for admitting the Ologies podcast Facebook group. Aveline Malik makes our professional transcripts. Kelly R. Dwyer makes the website. Noelle Dilworth is our scheduling producer. Our managing director is the Susan Hale. Jake Chafee edits and lead editor is, of course, Mercedes Maitland of Maitland Audio. Nick Thorburn made our theme music. And if you stick around to the very end of the episode, I

burden you with a secret for my life. This week, it's that I'm recording this. I'm in my pajamas in the guest room closet of my friend Catherine Burns' parents. I'm visiting them all in Austin for South by Southwest, right? Never been to South by, very excited. Tonight are the iHeart Podcast Awards and All of Jesus Up for Best Science Podcast. And we're against like stuff to blow your mind, Neil deGrasse Tyson's

StarTalk, Hidden Brain, and Science Versus. We won in 2022 for the best science podcast, which was a thrill, but that was remote. So I didn't get to go in person. So I get to go tonight. We'll see if Ologies wins. I'm about to shower and put my hair in a ponytail, try to look normal on a red carpet. And I will update you if Ologies takes home a trophy. I'll let you know at the end of part two. And thank you, Dallas and Duda Burns for the hospitality. I'm off to go put on a velvet suit. Okay, bye-bye.

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