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Ologies with Alie Ward
Intensivist Pulmonology (LONG COVID) Part 1 with Wes Ely
00:55:30
What is Long Covid? Is it real? What does it feel like? Do you have it? And how do you cure it? With fatigue and brain fog, you don’t want to spend hours scrolling through conflicting opinions. So we’ve got you covered with the wonderful and highly-respected pulmonologist and intensive care physician and Long Covid expert, Dr. Wes Ely. So tuck in, breathe deep 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 risk, why people say it’s not real, advice for caregivers, changing opinions in medicine, similarities to HIV, treatment options, auto-immune issues, POTS, post-exertional malaise, the best way to prevent it. Next week: Part 2 with even more info.
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- [00:01]
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- [01:02]
Alie Ward
Oh hey, it's your aunt who always carries Kleenex. Alie Ward and this episode is a long time coming. Just about five years. So March 11, 2020, it's been called the day that everything changed. I'm sure you remember a little something called the SARS CoV2 virus started to make its debut globally and COVID19 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 death 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 gonna 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 gonna 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 thousand 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 and breathes it. 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@patreon.com 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 spin off show. You can find smallogies 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 Yodel Bat who wrote if 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 and Long Covid intensivist pulmonologist Dr. Wes Ely.
- [04:52]
Dr. Wes Ely
My name is Wes Ely and I'm a him and I am so thankful to be here today.
- [04:58]
Unnamed Interviewer
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?
- [05:27]
Dr. Wes Ely
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. 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 in 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.
- [06:18]
Alie Ward
Care syndrome and picks, 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 hospital discharge. So PIC 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 unplugged planned 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.
- [07:05]
Dr. Wes Ely
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.
- [07:24]
Unnamed Interviewer
How far into the pandemic did that switch happen for you?
- [07:28]
Dr. Wes Ely
It happened around not too late. Obviously, it's 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 six, 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.
- [08:07]
Unnamed Interviewer
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?
- [08:21]
Dr. Wes Ely
Yeah, I'd say two big things. Let's talk individual patients differences and then epidemiologically, at the population level, individually post viral illness, you know, 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.
- [09:31]
Alie Ward
Again, the term for this is now iacc, that's Infection Associated Chronic condition. And no matter what the initial cause, an iacc, 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.
- [10:12]
Dr. Wes Ely
Cool. Yes. This is a disease state and it is real.
- [10:16]
Unnamed Interviewer
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?
- [10:38]
Dr. Wes Ely
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.
- [10:47]
Alie Ward
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 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 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.
- [12:02]
Dr. Wes Ely
Does, Covid is a very vascular problem. This is a viral illness that is extremely vascular. So the endothelium of our blood vessels gets infected with this virus and 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.
- [12:44]
Alie Ward
So if you heard the surgical angiology episode with a brilliant doctor, 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 en route to our hearts. We're gonna get right back to Dr. Ely in a minute or two, But I wanna 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 work or don't work. So let's have a quick listen to that.
- [13:38]
Dr. Herman Taylor
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 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.
- [15:26]
Alie Ward
And remember, that plaque is like spackle.
- [15:29]
Dr. Wes Ely
Over a moldy wall, exposing all of.
- [15:34]
Dr. Herman Taylor
That garbage to the blood passing by, which sort of sees it as this disruption in the artery 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.
- [16:11]
Alie Ward
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 CoV2 infection, pathogenesis, diagnostic Approach and Management in the journal 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?
- [17:50]
Dr. Wes Ely
Let's talk a little bit about how it might be different, though, than other viral illnesses. Would that be okay?
- [17:54]
Alie Ward
Yes. Yes.
- [17:55]
Unnamed Interviewer
Get into it.
- [17:56]
Dr. Wes Ely
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 cel, so thereby doubling and tripling and quadrupling. The virus copies itself.
- [18:31]
Alie Ward
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.
- [18:38]
Dr. Wes Ely
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 end 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.
- [19:11]
Unnamed Interviewer
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?
- [19:31]
Dr. Wes Ely
Yeah, generally you could 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 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.
- [20:09]
Unnamed Interviewer
Wow.
- [20:10]
Alie Ward
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 see 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.
- [21:07]
Dr. Wes Ely
We've learned a lot, but there's a lot more to learn.
- [21:10]
Unnamed Interviewer
What about other diseases kind of under. Or rather, what about other autoimmune diseases.
- [21:17]
Alie Ward
That might be sparked by a virus.
- [21:19]
Unnamed Interviewer
Like Ms. Or chronic fatigue syndrome or. I always say this wrong. I think it's Whelan Barre, but I'm not.
- [21:26]
Dr. Wes Ely
Or Whelan Guillain Barre.
- [21:28]
Unnamed Interviewer
Guillain Barre. Guillain Barre, yeah. Guillain Barre always say that wrong. And then I always triple guess myself.
- [21:35]
Alie Ward
It's Franche. It looks like Guillain Barre, but it's pronounced Baret, 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.
- [21:59]
Unnamed Interviewer
But is long Covid similar to those at all that could be kind of ignited by a virus or an illness?
- [22:07]
Dr. Wes Ely
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 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.
- [22:57]
Alie Ward
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 in 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, a phase 2 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.
- [23:45]
Dr. Wes Ely
Unfortunately, there are individual people who say they've been helped, but we don't have well done randomized control trials showing that that's a reproducible benefit for our long COVID patients.
- [23:55]
Unnamed Interviewer
Why do you think Covid is like, nah?
- [23:58]
Dr. Wes Ely
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.
- [24:23]
Alie Ward
So there's promising research, but no easy long Covid tests you can take.
- [24:28]
Dr. Wes Ely
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 NASAM where we helped redefine long Covid. Maybe we'll get to that later.
- [24:43]
Dr. Herman Taylor
Oh, we will.
- [24:44]
Dr. Wes Ely
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.
- [25:02]
Unnamed Interviewer
Well, that's a perfect time to ask what, 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?
- [25:22]
Dr. Wes Ely
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 signed 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-20s 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 2,000ft 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 will wipe him out for a week. Yesterday I went to the home of a young woman who is 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 and 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, 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 Finish 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 in a young, very otherwise brilliant mind. Life changing.
- [27:46]
Alie Ward
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.
- [28:31]
Unnamed Interviewer
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. Have you heard of the physics girl, Diana Cowern?
- [28:51]
Alie Ward
Yeah.
- [28:52]
Unnamed Interviewer
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?
- [29:04]
Alie Ward
Yeah.
- [29:04]
Dr. Wes Ely
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.
- [29:16]
Alie Ward
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. Ely's Choice 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 biostaticians, 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. Are you ready to optimize your nutrition this year? Meet Factor America's number one ready to eat meal service. Factor's fresh never frozen meals are dietitian approved and ready to eat in just two minutes. Their chefs handle the shopping and Japanese delivering fresh, fully cooked meals to your door. All you have to do is heat and Enjoy. Choose from 40 weekly options across eight dietary preferences like calorie, smart, protein plus and keto. And if you're looking to lose weight, Factor's keto meals can help you lose up to £8 in eight weeks. Savor Nutritious premium Meals. No matter how busy life gets. Eat smart with factor get started at factor meals.com factor meals50 off and use code factor meals50 off to get 50% off plus free shipping on your first box weight loss with factor Keto based on a randomized control clinical trial. Results will vary depending on diet and exercise. You know me. You know I love Squarespace. I've been using Squarespace since before Ologies launched. Here's the deal. I needed a website. I put it off for three years. I heard an ad about Squarespace on.
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Unnamed Interviewer
Another podcast in one night.
- [31:10]
Alie Ward
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Unnamed Interviewer
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- [31:53]
Alie Ward
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- [31:57]
Unnamed Interviewer
Do it.
- [31:58]
Alie Ward
Make a website. You will not regret it. I'm with you. Holding your hand in spirit, not creepy. I know I usually save my secrets for the end of the episode, but I'm going to tell you my secret favorite candy. It's Reese's Peanut Butter Cups. It's really Reese's. Anything but. Reese's Peanut Butter Cups are the thing that I'm like, have I had a bad day? I get these. Have I had a good day? I get these. Chocolate, salty peanut butter. The textures. I love everything about them. Also that there's two. So I'm like, oh, I get this one for later. Which is one second later. Anyway, Reese's Peanut Butter Cups. I love you. That's all. If you're me, you can shop Reese's Peanut Butter Cups now at a store near you found wherever candy is sold.
- [32:32]
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- [33:07]
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Race the rudders, race the sails, raise the sails.
- [33:11]
Dr. Wes Ely
Captain, an unidentified ship is approaching.
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- [33:37]
Alie Ward
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% bedbound 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.
- [34:34]
Dr. Wes Ely
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 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 informal 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. And 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 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.
- [36:01]
Alie Ward
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.
- [36:17]
Dr. Wes Ely
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.
- [36:35]
Unnamed Interviewer
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 needs to.
- [36:49]
Alie Ward
Shift a little bit.
- [36:50]
Unnamed Interviewer
And. 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.
- [36:55]
Alie Ward
Like, it doesn't.
- [36:56]
Unnamed Interviewer
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 on how to care for patients with this?
- [37:16]
Dr. Wes Ely
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, 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 Eli's four questions. What are your favorite hobbies, your favorite music, your favorite food, and your pets 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 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 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, Ally, 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 gonna stay with you and we'll start this process together.
- [38:53]
Alie Ward
Do you have just like a years.
- [38:55]
Unnamed Interviewer
Long waiting list of people that want to see you? How do you decide who you see?
- [39:01]
Dr. Wes Ely
I see who I can. And we love it. I'm an ICU doctor. I start 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.
- [39:49]
Unnamed Interviewer
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.
- [40:09]
Dr. Wes Ely
Thing that the doctor, the nurse practitioner, the pa, the nurse, anybody needs to do is set 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. Okay, In January of 2022, you got Covid. That was your second bout before that 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 bedbound, and you couldn't think clearly. Okay, that's a seven to eight week time frame that fits perfectly for disease. Stay long Covid. Now tell me, how did your symptoms evolve? What did you try to do to fix it? How did it get worse or better, and what have you tried since? So it's just being a good history taker and a good listener and not thinking that. We know I'm not 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.
- [41:39]
Unnamed Interviewer
What have you seen as the most effective intervention for long Covid? I know we used to hear, if.
- [41:47]
Alie Ward
You got Covid, you should exercise, that'll help.
- [41:50]
Unnamed Interviewer
And now we hear maybe don't do that. But any tips for preventing getting long Covid?
- [41:56]
Dr. Wes Ely
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 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 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 injury 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 will also help those with vaccine injury as well. So there's going to be hopefully an overlap in therapeutic approach here.
- [43:16]
Alie Ward
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.
- [43:34]
Unnamed Interviewer
And vaccines still, best way to prevent getting Covid in the first place.
- [43:39]
Dr. Wes Ely
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.
- [43:56]
Unnamed Interviewer
Are there stats in terms of like the percentage of people that get a vaccine injury? Does it tend to be very slim?
- [44:02]
Dr. Wes Ely
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, less than 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.
- [44:38]
Unnamed Interviewer
That's great to know.
- [44:39]
Dr. Wes Ely
So I dove into prevention a little bit, but let's go back to treatment. So if somebody develops long Covid or any IACC 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.
- [45:10]
Alie Ward
More on POTS in a bit.
- [45:12]
Dr. Wes Ely
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 in 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 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?
- [46:03]
Alie Ward
Yeah, yeah, I would love that.
- [46:05]
Dr. Wes Ely
Okay. So 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. Monday this week is going to be less than next week and next week's 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 control 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. 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.
- [47:41]
Alie Ward
Right.
- [47:42]
Unnamed Interviewer
You mentioned that it's a very vascular disease. Is that the vascular system sort of going haywire in different ways or is that the vascular system? It's the mitochondrial system, it's. It's so many things affected.
- [47:57]
Dr. Wes Ely
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.
- [48:05]
Alie Ward
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.
- [48:19]
Dr. Wes Ely
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 know, like 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.
- [49:15]
Alie Ward
So again, as we covered in surgical angiology, Covid can wreak some havoc and cause blood to clot in both, both the big plumbing and the narrowest plumbing of the body, like a hairball and a cat or a fatberg made of baby wipes stopping up the sewer that you definitely do not want there.
- [49:33]
Dr. Wes Ely
So the vascular nature of COVID is both macro and micro. Now, the macro part, you have to get a blood thinner, like, you know, something that thins your blood out for three to six months to keep you from dying of a stroke or a 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 this vascular business. And then the other part, though, is that the immune system is turned on. So in the head, it's not just about micro clots 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?
- [51:02]
Unnamed Interviewer
Yeah, yeah, totally. That's a great analogy. You know, you mentioned your med school in Tulane and how long you've been doing this, which, by the way, you look amazing. What exercise routine do you do? What do you do?
- [51:16]
Dr. Wes Ely
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.
- [51:23]
Unnamed Interviewer
The end of the day, because whatever you're doing, I'm like, okay, I guess I gotta 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.
- [51:49]
Dr. Wes Ely
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 are 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 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. That 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 CoV2, so many patients had really 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 used 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. Forward.
- [53:55]
Unnamed Interviewer
But what were you supposed to do? It's a very contagious disease.
- [53:58]
Dr. Wes Ely
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, we took some steps to protect ourselves and others. They were, though, injurious to the patients. And it's. 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 Brain. 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.
- [54:46]
Alie Ward
And again, his book is called Every Deep Drawn A critical care doctor on healing, recovery and transforming medicine in the icu.
- [54:54]
Unnamed Interviewer
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?
- [55:03]
Dr. Wes Ely
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 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. You're 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 finish giving you a paxlovid course or a course of some therapy you're getting in the ICU that I'm 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.
- [56:30]
Unnamed Interviewer
Oh, that's amazing. We also donate to a charity of your choosing, a related charity. Do you have one top of mind or do you want to look into it?
- [56:37]
Dr. Wes Ely
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 that you can just find us at icudelirium.org icudelirium.org and we commit to you that every penny, if you tell us that's how you want it to be used, will go towards creating a community, a survivorship community where people can yell, scream, cry and get the social worker help that they need.
- [57:11]
Unnamed Interviewer
That's so great. Okay, I'm gonna lightning round as many as we can.
- [57:16]
Alie Ward
Okay?
- [57:17]
Unnamed Interviewer
Marcella Mathis from Long Beach, California, currently residing in South Carolina.
- [57:22]
Alie Ward
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 compare to those who've had it only once? So ask wonderful people what you were wondering. And yes, next week we're gonna drop the part two to this. We're gonna 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 Duped by snake oil. What's the deal with pots? Histamines, 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 Bluesky and Instagram. I'm alieward 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 Ologies Ologies merch is available at ologiesmerch.com thank you so much. Aaron Talbert for admin in the Ologies podcast Facebook group Avileen Malik makes our professional transcripts. Kelly R. Dwyer makes the website. Noel Dilworth is our scheduling producer. Our managing director is the Susan Hale. Jake Chaffee 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 from my life. This week it's that I'm recording this. I'm in my pajamas in the guest room closet of my friend Katherine Byrne's parents. I'm visiting them all in Austin for South by Southwest. Right? Never been to South By. Very excited. Tonight are the I Heart podcast awards and Ologies is 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 do Da Burns for the hospitality. I'm off to go put on a velvet suit. Okay, bye Bye. Pachydermatology Homeology Cryptozoology Lithology Nanotechnology Meteorology Olfactology Mapology Serology Cell phenology.
- [60:08]
Dr. Wes Ely
It'S been 84 years.
- [60:12]
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