Science Friday - Future For Long COVID Patients, Getting COVID Info To Sihk Truckers. April 9, 2021, Part 1

Episode Date: April 9, 2021

What Does The Future Look Like For COVID-19 Long-Haulers? There’s something strange happening with some people who’ve gotten sick with COVID-19: Somewhere between 10 and 30% of people who are infected are stuck with long-lasting effects and complications.   People dealing with long-term symptoms after a coronavirus infection are known as COVID long-haulers, and as the pandemic gets longer, their numbers grow. Long-haul COVID is still a mystery in a lot of ways, but work is being done to understand it better. Joining Ira to talk about the various effects of Long COVID and its possible treatments are Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health in Bethesda, Maryland, and David Putrino, director of Rehabilitation Innovation for the Mount Sinai Health System in New York, New York.     Punjabi Sikh Truckers Lack Access To COVID-19 Information The cab of Sunny Grewal’s 18-wheeler is neat and tidy. He’s got bunk beds with red checkered sheets and gray interior cabinets that hide a fridge, microwave, paper plates and spices for long days on the road. One plastic container holds bite-sized sweets from his native India. “We call it gur, G-U-R,” Grewal says. “You can put it in tea, or you can have a small piece after food.” Grewal is a trucking company owner-operator based in Fresno. He’s on the road upwards of 150,000 miles a year, delivering produce and cleaning supplies like hand sanitizer to and from the East Coast, the Midwest, and the South. In other words, his work is essential to keeping this country running. “If nurses want to take care of you, they need the stuff that we bring,” he says. “You want to buy food to stay home, you’re going to stock the food in your house, we bring that food.” Early on in the COVID-19 pandemic, the state of California designated truckers as essential workers, but that status hasn’t materialized into any tangible advantages or privileges:No requirements that rest stops remain open, no hazard pay, and no priority access to the vaccine. “It is strange that our day didn’t come sooner,” says Lovepreet Singh, a truck driver from Bakersfield who was hoping momentum in support of his industry would build after the White House honored truck drivers with a rally in April 2020. Singh and Grewal are also among an estimated hundreds of thousands of truckers in the U.S. who are Sikh, from the northern Indian state of Punjab. The North American Punjabi Trucking Association estimates Punjabi Sikhs make up 20 percent of the country’s truckers and control as much as 40 percent of the industry in California, and yet few public health departments in the state offer critical COVID-related information in the Punjabi language. “It makes me feel left over, you know?” says Grewal. That lack of information has had consequences for the whole Punjabi-speaking community, says Manpreet Kaur of the non-profit Jakara Movement, especially in the early days of the pandemic. “The information was just always missing or it was too late or it was shared in a way that wasn’t easily understood,” she says. Read more at sciencefriday.com.     Particle Behavior Disobeys Laws Of Physics As We Know Them Physicists have confirmed the unexplainable behavior of an elementary particle first noticed 20 years ago. Experiments at Fermilab in Batavia, Illinois, showed that a certain subatomic particle, called a muon, disobeys the laws of physics as scientists have written them. This is a big deal for scientists in a field where much is still unknown. Plus, our hotter Earth will officially become the new normal next month. The National Oceanic and Atmospheric Administration will release its once-a-decade update to “climate normals”, baseline temperatures meteorologists rely on for their forecasts. While some places won’t see much of a change, this new update will substantially change what’s “normal” across the coasts and in the southern U.S. Joining Ira to talk about these science stories and other big news of the week is Roxanne Khamsi, science journalist based in Montreal, Quebec.   Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

This is Science Friday. I'm Iroflato. A bit later in the hour, we'll explore long-haul COVID, people suffering with symptoms like exhaustion, loss of taste, and neurological conditions, suffering for months after diagnosis a bit later. But first, physicists have confirmed an unexplainable behavior of an elementary particle first noticed 20 years ago. Experiments at Fermilab in Batavia, Illinois showed that a certain subatomic particle called a muon, disobeys the laws of physics as scientists have written them. And whenever stuff appears to be breaking the law in science, it's a big deal. Here to help explain the story and other science news of the week is my guest.

Roxanne Camsey, science journalist based in Montreal, Quebec. Welcome to Science Writing. Nice to have you back. It's great to be back. Thanks for having me. You know, Chris Polly, a physicist at Fermilab, called this discovery there, quote, Mars rover landing moment. So this is a big deal.

Yeah, and what I love about this is it's physicists getting excited when something is a little bit unexpected and kind of wrong per their predictions. So I think that it's really cool in that way. Walk us through what actually was unexplainable. Sure. So as you said, muons are these particles, and they're actually known as fat electrons, which I think is interesting, because they're 200 times as massive as electrons, which is a particle a lot of people know. And what they did is that they exposed these muons to an intense magnetic field. And when that happened, the muons did some wobbling, like a spinning top. But they did it in a manner that wasn't quite consistent with what the physicists had calculated would happen.

So they got all excited because there was this fluke and that could actually inform them to tell them how their equations about, you know, how the universe and matter operate are off. So it's actually helping nudge them towards more correct equations that could explain more of the universe. You know, this is the second announcement in the last two weeks. I mean, we talked about this last week on Science Friday of a different, unexplainable behavior of an elementary particle. Last week we talked about muons and electrons. Shouldn't be surprising, I guess. If we don't know what 96% of the universe is made of, dark energy and dark matter,

there should be a lot of surprises out there. I know. I know. It makes biology look kind of stable by comparison when you talk about physics. So, I mean, for sure. And I think that the statistics here matter as well, because according to these measurements, there is a one in 40,000 chance that this was just a statistical anomaly, that it was a fluke, and, you know, that it didn't really happen in a way. And physicists are a really precise bunch. One in 40,000. to them is not quite sufficient to satisfy them. Not good enough. It's not good enough. They want it to be a lower probability.

So they're going to keep pursuing this and see if they can make themselves more sure. All right. Speaking of pursuing, let's move on to some strange physiology news. It turns out if you participate in certain activities, your heart can shrink. Tell us about that. It's true. So, you know, we often think about endurance swimmer. and astronauts as people who are getting stronger and more robust through these activities.

But scientists, they wanted to know what would happen when astronauts go into space, because astronauts are spending obviously a lot of time there, and we might end up in space more often. So they looked at Scott Kelly's heart, and you might know Scott Kelly because he was a former astronaut, and now he's in the Senate. But he spent 340 days aboard the International Space Station, which is a really long time. It's almost a year. So they compared his heart with that of an endurance swimmer, Benoit Lecomte. And what did they find?

So what they found was so interesting. So Benoit Lecomte spent a long time swimming across the Pacific Ocean. He'd hoped to cross it. So he spent between nine and 17 hours each day, swimming or sleeping, basically not subjected to gravity in the way that normally we are when we're walking around. And they looked at his heart and they compared it to Captain Kelly's, who was obviously floating around a lot in space. And so they were really trying to understand how gravity affects heart function. And they found that actually their hearts atrophied a little bit,

which is a little sad. Ooh, I mean, that's bad. You got to have heart as the song goes. Does the heart go back to normal after some period of time? It does. So they lost about 20% of the total mass in their left ventricles. And what happened was, and the reason for that is that over time, the heart wasn't working as hard. So the muscle kind of atrophies, kind of like my legs during this, you know, lockdown pandemic period. I definitely don't have the leg strength I used to. Yeah, I know.

So, but Ira, thankfully, after they got back on. TerraFirma, they had a rebound of their heart mass. So that's a kind of positive outcome of the end. That's good. That's good. Let's move on to a story that you wrote for the New York Times called the mysterious aftermath of infections. I mean, we're going to be talking about long COVID later this hour, but in your article, you say lasting effects of infections are nothing new. Where have we seen this before? So, yeah, we've been seeing this for a long time. In this op-ed, I tried to walk people through all the examples that have accumulated over the years. I don't know if you've ever had strep throat.

Oh, yeah, I think like just about everybody has. It's quite common. Yeah, so luckily, these days we have antibiotics that can treat it. But if you don't treat strep throat, it's been known for, you know, many decades, and, you know, maybe even perhaps longer that you can have damage to your heart even after that sore throat's gone and you feel that the acute infection has passed. Yeah, I think your valves, the heart valves, I think, can get involved in this. Yeah. I mean, all sorts of things can go wrong. And similarly, with H. Pylori, which is this bacteria that can infect your stomach, if that hangs around too long, you can get ulcers and stomach cancer. HPV, the human papillomavirus, can also cause throat

cancer and, you know, you can also get this effect after infections called Gillian Barre syndrome, which is a paralysis. All these kinds of infections cause these aftershocks that we don't really think about viruses as causing cancer, but they can, or bacteria is causing ulcers. But all of these things are happening. So what research really has to do is figure out how these infections are causing these long-term aftermath, especially as you know it. because of COVID, we're seeing that this isn't just, you know, one or two infections.

It's a lot of different ones. Yeah, it's a whole spectrum. As I say, we're going to be talking about long COVID later in the hour. Let's move on to some climate news. Our weather forecasts are going to change next month. Are you forecasting that or is that what's going to happen? It is actually going to happen. So the National Oceanographic and Atmospheric Administration, which is a lot of,

also known as Noah, which is one of my favorite administrations because I'm a little weather-obsessed myself. So once in a decade, they release what is known as their climate normals. And that is basically, they look at a 30-year average. So, you know, today when they are talking about their averages, they're looking at 1981 to 2010. But come May 4th, they're going to update that so that they're looking at a different 30-year period. They're going to look at 1991 to 2020. And that's significant because the decade 2011 to 2020 was one of the hottest on record in the U.S. and globally it was the hottest decade since 1880. So all of a sudden, the averages that we're going to be comparing our current weather to

is a higher average, and that has all sorts of implications. Yeah. What do you mean? Give me an idea of what kind of implications we're talking about. Sure. So if you're, let's say, in the West Coast, which is actually one of the areas that saw a substantial upward trend, temperature, your forecaster on the news is going to be saying, you know, we're going to have cooler than normal day. But that cooler than normal day is actually compared to a normal that's hotter. So if they tell you it's cooler than normal now, it's going to feel cooler than in a month from now. Does that make sense? Yeah, yeah. I do remember a few years ago,

and this was exactly the kind of thing you're talking about. It's so hot in Australia now in the summertime that they had to add another color to their weather map. They had to add like a deep purple because the weather in Fahrenheit degrees was getting up, you know, 110 or hotter, and they just didn't know how to show that on the map, so they had to change the color of the map. Yeah, I mean, it's, we're going to have to kind of reframe our thinking in terms of what is normal. And that's kind of a little concerning, given the trends. I know, There are all sorts of other things that might be harder. We have to take into account.

So it's a, I want to say it's a mixed bag, but it's more even complicated than that. We're going to have to see what it feels like to live in this new climate normal. Yeah. And one last story to talk about involves yawning and lions. What's going on here? Well, I hope that no one is yawning as they're listening to Me Talk. But I find yawning perennially fascinating, all the more so because we don't really know what's going on when people yawn. So scientists tried to get a clue into the function of yawning by looking at lions, which

I think have the most glamorous yawn of like any animal out there. So over four months in 2019, they monitored 19 lions in South Africa at the Greater Makalali Private Game Reserve. And they noticed that when a lion caught another yawn from a lion, they were 11 times more likely to mimic the movements of that yawning lion than if they were just hanging around a non-yawning lion. So I think what the scientists say is that this is the first time that anyone has tried to quantify how yawning helps coordinate collective behavior. So yawning might be functioning not just to look glamorous if you're a lion, but actually to coordinate some kind of social collective behavior. I think that's really cool. That is cool. And it might explain, or a back-

up, you know, we say yawning is contagious, right? If you're in a group of people and one person starts to yawn, then everybody seems to start to yawn. It seems to be happening with lions also. Yes. And actually, as you say that, I'm thinking, thank God it's like not harmful because we're talking about so many contagious things these days. But yes, like, yeah, it has this potential greater function. And I think it's really cool that lions are giving us a clue into that. I'd love to know more of other animals kind of coordinate their behavior. And, you know, this research is nothing to yawn at, if you ask me. Ooh, and maybe we can have that MGM lion now yawning at the beginning of a movie,

but that may send the wrong signal, I think. Yes, and what is a yawn versus a roar when you really think about it? I mean, they might be more related than we think. There you have it. Roxanne Comsie, science journalist based in Montreal. Thanks for taking time to be with us today. Thanks so much. It's great to be here.

We're going to take a break, and when we come back, we'll talk about how Punjabi-seek truck drivers in California have been navigating the pandemic. This is Science Friday. I'm Ira Flato. A little bit later, we'll talk about long-haul COVID and what treatment options are out there. But now, it's time to check in on the state of science. This is KERNO, St. Louis Public Radio, KU. Iowa Public Radio News. Local science stories of national significance. During the pandemic, there's been a lot of talk about the safety of essential workers, people who keep the infrastructure and basic operations of the country going for the rest of us. One group designated as essential workers was truck drivers.

In California, Punjabi 6, or some people pronounce it, Sikhs, from that northern Indian region, make up a large part of the trucking workforce. According to the North American Punjabi Trucking Association, Punjabi Sikhs make up 40% of the trucking workforce in California and 20% nationally. But navigating COVID information and resources for Sikh truckers has been a challenge. Kerry Klein is here to fill us in on this story. She's a reporter at Valley Public Radio in Fresno, California. Welcome back. Thanks, Ira.

Let's talk about this. In California, Truckers, we're you. deemed essential workers. Did this translate it to more resources or vaccine priority? No, it has not, at least not yet. You know, early on, when the vaccine itself first came out in California, you know, there was this statewide list of vaccine priority. They had these tiers by occupations, health care workers, teachers. Transportation workers were originally just a few tiers down in that list. But in January, Governor Newsom shifted this all to be a priority system based on age and medical vulnerability, leaving truckers to wait their turn along with all the

rest of us. So that's for the vaccine. But then also health agencies at the state and with various counties have provided very little information about COVID-19 in these truckers native language of Punjabi, you know, leaving them also feeling a little bit left behind of all this. Yeah, I know in your story, as you covered this issue, you spoke to Punjabi Sikh truck drivers. How were they feeling about the resources that were available to them. What were the main issues? Was it, was it that no one was communicating with them? Yeah, I mean, that was one of the biggest issues. And I shouldn't say that no one, you know, a lot of health agencies, they might make a couple of documents or a couple of fact sheets available in Punjabi. But, you know, like the rest of us who speak English and sometimes Spanish,

you know, we have these data dashboards. We have these registration pages for testing and for vaccines. and a lot of these things are not made available in Punjabi. And so it can be very difficult to navigate, get access to resources, and get these ever-changing resources and regulations and policies directly from the health agencies. And that was kind of leaving a lot of other organizations to step in and fill in these information gaps.

You spoke with Raj Karin Ber Singh, who was an announcer and engineer with Punjabi Radio USA, and this is what he had to say. I know people can argue, okay, they need to know English. Okay, they need to know English. How are they reaching out? There is no outreach to them. Even the health officials or the departments, they are not contacting us. Carrie, is that what you found? Yeah, what Singh is saying there is that, you know, his radio station, Punjabi Radio USA, they have an incredible reach. You know, they have these

brick-and-water radio stations that broadcast locally, but they also have these internet streams that reach people and truckers especially around the country. And he's saying, we have this incredible network reaching these essential workers and yet health agencies are not contacting us to actually do outreach to them. And he was really frustrated by kind of his community being left in the dark. But that being said, recently in the last month or so, a lot of that has been changing. So the state did contact his station to set up a vaccine campaign in Punjabi. And then some counties also have been, Fresno County particularly has been scheduling vaccine clinics at Sikh Temples and other organizations are beginning to get contacted by health agencies to do these Punjabi campaigns around the state.

This lack of information has been an issue for the wider Punjabi-speaking community. There were Punjabi organizations, right, that stepped in to fill in the information gaps. What were some of those campaigns like? Yeah, well, so one of them is this Punjabi Radio USA that we already talked about. During the pandemic, they really doubled their news content and did a lot of call-in shows that have been specifically about COVID and a lot of truck drivers especially have told me that this is where they got there. Their daily news is from this radio station. But there's also another organization known as the Jakara movement.

It's a nonprofit here in California. They've translated a lot of information. They've gone out to sick temples to help register people for tests and vaccines. And they've also put out culturally sensitive graphics for things like how to wear a mask over a turban and showing elderly people in traditional clothing getting their vaccines to promote people who look like them in this community being reached by a pandemic information. The San Joaquin Valley is southeast of San Francisco. How has the pandemic affected that area?

Well, we've been, by a lot of measures of the pandemic, we have been hit harder than the rest of the state. We were along with the Los Angeles area. We were the first region to go into regional lockdowns last fall. Our hospital ICU's were at capacity for a month during the winter surge. we've lagged behind the rest of the state in improving and in reopening. That being said, however, California is actually right now doing very well compared to the rest of the country, and that includes our region as well.

Thank you, Carrie. Great information. Thanks for taking time to be with us today. You're welcome. Carrie Klein, a reporter for Valley Public Radio in Fresno, California. You can read her full report. It's up on our website, science friday.com slash state of science. This far into the pandemic, those who haven't gotten COVID-19 have been lucky or careful because there's something strange happening with some people who've gotten sick and are left with long-lasting complications. These patients are being called COVID long-haulers,

and it's estimated that somewhere between 10 and 30 percent of people who get COVID are stuck with lasting effects. We asked our listeners on our SciFri Vox Pop app to tell us their experiences with long COVID. I started showing COVID-19 symptoms back at the beginning of November 2020, and I had flu-like symptoms for a couple of weeks, and it cleared up. About a week into the experience, I lost my taste and smell. My taste is slowly come back, but it's now March 2021, and I still can't smell anything.

I got COVID-19 in December. It affected my legs, mostly, which are getting much better. but I'm not back to the way I was. I had COVID in December, and I went down really hard. I still don't have my sense of smell completely back. My taste is still altered. I'm foggy all the time mentally, and I consider it a really, really good day if I don't have to take a nap

in the middle of lunch. So I just, I want to know if this is going to be my new reality forever. Thanks to Michael from Kansas City. Cynthia from Massachusetts. and Catherine from Chicago for sharing their stories. Long-haul COVID is still a mystery in a lot of ways, but there is a lot of work being done to understand it better, and that's what we're going to be talking about with my guests.

Dr. Walter Karachetz is Director of the National Institute of Neurological Disorders and Stroke in Bethesda. Dr. David Petrino, Director of Rehabilitation Innovation for the Mount Sinai Health System in New York. Welcome both of you to Science, Friday. Thank you, Ira. Pleasure to be here. Yeah, thanks for having us. Nice to have you. David, let me begin with you. Foggy head, loss of taste, smell, limbs not working as well. Are these all typical long-haul symptoms? Yeah, these are symptoms that sound really familiar to me. We've been tracking this for quite some time now, and some of the most common symptoms that we'll see in this syndrome is

cognitive difficulties are present in about 80% of our cohort, headache, chest pain, shortness of breath, sort of high heart rate and feeling like the heart is beating rapidly in the chest, exercise intolerance, and extreme fatigue. These are some of the cardinal symptoms that we're seeing in roughly 80% of the population. You know, we say when you have COVID, you have typical symptoms, but there are so many symptoms here. Could it be almost anything? Yeah, so far we've been tracking over 60 distinct symptoms, and they really do run across the entire body. They're multi-organ, their multi-system. It can be really baffling to try and track everything that we're seeing.

This is why we've started looking toward systems of the body, such as the autonomic nervous system, because the autonomic nervous system can really control lots of things, highly diverse things across the entire body, and it makes some sort of sense in the context of these symptoms. Autonomic nervous system means for our listeners. The autonomic nervous system is a portion of your nervous system that controls all of the things in your body that you don't ordinarily need to think about controlling, such as when to breathe in and when to breathe out, when your heart should contract and relax, digestion, you know, when your hair should stand on end and, you know, body temperature. So it's a very diverse

system and ordinarily it doesn't require any conscious effort to control. But if it gets knocked out of balance, it can cause all sorts of very unusual symptoms. At what point did it become clear that there was something strange going on with regard to long-term effects of COVID? Well, for us, it was around late April, early May of 2020. We had been using an app to monitor acute symptoms and provide at-home care for people with acute cases of COVID that were not being hospitalized. And we had been running this app from about March of 2020. So by the time we hit late April, early May, we had around 800 people on the platform, and around 10% of the earliest adopters of the app were starting to express concerns about new symptoms that were emerging. And they just really weren't getting better.

You know, they'd been on the app. Most people would get on the app and after about five weeks, they'd be discharged and thank us and say goodbye. but these people were starting to linger for two or three months. And all of these symptoms that they were talking about weren't the classic acute COVID symptoms. So at that point, we really started to notice that we were seeing what looked like a post-viral syndrome. Interesting. Dr. Kourashets, I want to ask you about this new study that's getting a lot of attention. Researchers found that in the U.S., a third of the people who had COVID developed a cyclone.

or neurological condition within six months. This is pretty shocking, is it not? Yes, I think most of the groups in David could talk to this, seeing anxiety, depression, post-traumatic stress disorder-like symptoms, usually on top of the more somatic symptoms that he mentioned. And that I think is to be expected. Now, the big question is, is there something that has affected the brain in COVID? and the post-COVID period that is also contributing to these difficulties, particularly with concentration, memory. And that goes along heavily with fatigue. I think David mentioned that.

And the studies are showing, yes, that these folks, when they're tested or not performing, as you would have expected, in terms of their cognitive abilities. And they're telling you that because their main complaint is, you know, they go back to work and they just can't work at that. normal level that they did before, some of them can't go to work. I would say that what should be mentioned is that, you know, in COVID, when you go into that severe stage and you're in the hospital and then you may go into the intensive care unit and you have what's called acute respiratory distress syndrome, we know that people who have acute respiratory distress syndrome, COVID or no COVID,

have long recovery periods, and they have a lot of these symptoms that David mentioned. The surprise here with COVID is that many of the people who are suffering these complaints have never been in the hospital. So the CDC did a report out in July looking at non-hospilized patients and 35% of them and not returned to baseline health two to three weeks after their test was positive. And if that was influenza, I wouldn't have expected 90% would have been recovered by that time point. And so we really kind of need to get at the bottom of this. And NIH has really ambitious plans to do that.

We call it the post-acute sequela of COVID. It's a very boring technical term, but it kind of meets what it is, says what it is. And so we are going to develop a national program to follow people who have COVID, COVID, try and understand what is the recovery normally in people who recover quickly. And how does that differ in people who recover more slowly? And then also to study the people who have persistent symptoms now months out and try and understand what

is the biological base of those symptoms. What can we do to kind of alleviate the symptoms and get people healthier again? And the last bit that we really have to understand is a little bit off the topic, but not entirely, is the fact that COVID has infected so many millions of people that we need to look and see, does it really affect your risk of developing other disorders in the future? Alzheimer's, cardiac disease, for instance.

So that's kind of the gist of what the NIH programs are going to go after. This is Science Friday from WNYC Studios. It seems like you really do need a centralized center there at NIH. because it takes in all the different divisions. You have infectious disease. You have neurological. You have all these others aging. Is that what you're talking about?

Are you going to create sort of a new mini-division at NIH to study this? Well, what we're going to create is actually a multi-institute program, which is part of it within NIH itself, but most of it will be out in the university settings or in the community settings. So we envision a large data center where all the data, the imaging data, the blood test data, the genomic data, all flow in to this one data center where people will be able to go in and look for associations, a coordinating center that will coordinate all the activities of these multiple different cohorts. Walter, it's clear that there are a lot of people out there suffering from long COVID symptoms. Many of them are people you deal with. We've heard from a lot of them on our Science Friday Vox Pop app,

so I'd like to bring them into the picture from people who are actually suffering from them. Here's a question from Annie in Southern California about one symptom that seems pretty common. Is there any cures for the lack of smell, which affects your taste? Right. So the loss of smell is we think due to the fact that the virus infects the nasal epithelium, so the surface of your nose inside your nose. And there, there are nerve cells there that detect odors and send the signals back into the brain. The good news is the best evidence is that the virus does not affect the nerve cells themselves, but the supporting cells around those nerve cells. and all those cells can regenerate. So the hope is, and this is the expectation, that these cells will be able to regenerate and your sense of smell will come back again.

Couldn't guarantee it'll be exactly as it was, but in general, in similar conditions, that's what you see. You need to wait until the regeneration occurs before you get your sense of smell back. We have to take a quick break, but we will continue our conversation about COVID long haulers when we come back.

This is Science Friday. I'm Ira Flato. In case you're just joining us, we're continuing our conversation about COVID long haulers, people dealing with health effects months after infection. Here are my guests,

Dr. Walter Karachetz, Director of the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland, Dr. David Petrino, Director of Rehabilitation Innovation for the Mount Sinai Health System here in New York City.

Let me go to our next message, this one from Amy in Portland, Oregon. Amy was actually the person who coined the term COVID long haulers a year ago. You can read her story in a Wall Street Journal article from January 1st. Here's what Amy had to say. What I want to know is, will my brain heal? Can I get better? Will I ever recover? Because I've been sick for a year now.

as of March 15th, this is my COVID anniversary. And I want to know if I have hope of returning to my previous life or if this is a chronic illness. And that's really hard to live with. So that's my question. David, do you have an answer to that? Well, I think that no one has an answer to that right now in terms of this is a new condition. we are rapidly struggling to work out everything that we can about this novel condition.

But if we can bring a little bit of comfort to Amy, we've actually just frozen a data set from our first 100 patients that have been through a rehabilitation protocol. We specially designed this rehabilitation protocol for COVID long haulers. And the good news is we're seeing around a 40% improvement in reported symptoms. The bad news is we're seeing this around 40% improvement after about 160 days in the rehabilitation program. So I think what everybody needs to hear at this point is that improvement is possible with careful rehabilitation. But we're looking at a very long road to complete recovery. We have had cases of complete recovery at this point, but these are individuals who have been consistently working with our rehabilitation program.

for, you know, more than 12 months. So, so I think that that is the timeframe that we need to be thinking on. That's the scale that we need to be thinking on when we think about rehabilitation. I think that even then, there's no, there's no guarantee that everybody is going to feel the way they did pre-COVID. We still have so much learning to do before we can understand how everybody's going to respond to rehabilitation. And I think also government agencies, CDC, NIH, Social Security Administration need to brace for this because from our data set, what we're seeing is that 60% of individuals who are coming to us for care and we've managed around 950 cases at this stage tell us that their employment status has changed. And so I think that we all need to be ready

for a big influx in people's work status changing, their life status changing for a period of time. And we all need to be prepared with the best science and the best possible care coordination to make sure that all of these individuals who are feeling exactly like Amy is feeling, completely displaced, like they've lost control of their body. We need to all work together with a lot of compassion to bring them back. Can you give me an idea about what rehab looks like? Sure. So as I mentioned earlier, we have focused a lot of our attention on the idea that many of these symptoms are similar to what we see when people have a condition known as dysodonomia, the autonomic nervous system being thrown out of balance.

And when you look into the literature surrounding how to rehabilitate individuals with disordinary. There are a number of behavioral interventions where we work around identifying each patient's specific triggers of severe symptoms and give them strategies to avoid those triggers. So to give a concrete example of that, some people will experience a severe attack of symptoms immediately after eating a big meal. That's because in many cases of disordinomia, stretching out of the stomach, will cause an autonomic response that makes them feel like they're about to faint, that their heart is beating rapidly in their chest,

and it's incredibly unpleasant, and it can knock them off balance for the rest of the day. So in individuals who get triggered by large meals, of course, we have them working with a nutritionist to help them plan out smaller meals that aren't going to bring on these triggers. There are a diverse number of triggers that we could go through, won't because we got limited time. But the point is the first thing we start with is you currently feel like you're out of control, your body is out of control. Let's bring some normalcy and some sense to what you're experiencing. So for every identified trigger, we come up with

a solution. And the percentage of patients you said who actually are improved after your treatments? So rather than looking at percentage of patients who are showing recovery, we were talking more about the average recovery in the group, and the average recovery in the group is around 35%. That's very, very interesting. Walter, is there a certain demographic that seems to be hit harder by neurological symptoms after COVID? There is certainly from the reports that are out there, there are more females and males in most of the reports of people with suffering post-acute sequela of COVID. David could. There be a lot more people who are suffering symptoms out there and don't know that they have, that they're long haulers.

I think that certainly we could have a large number of people who are out there and just not feeling right after their COVID infection and either, you know, don't realize that it's something that they can seek help over or, in fact, you know, don't feel safe seeing a physician to describe their symptoms. A lot of what has been happening, what was happening early on in the pandemic and is still happening, thankfully, to a lesser degree, is there's certainly a lot of medical gaslighting going on in this community. And so I think that right now the demographics may be skewed because we know that historically excluded groups will experience more medical gaslighting. So, you know, women, people of color, et cetera, people with disabilities. And so I think that there could very well be a number of individuals out there who are experiencing

these symptoms, but simply don't want to go to the doctor and say, oh, I'm, you know, I had COVID and now I'm feeling, here are some vague subjective symptoms that I'm experiencing. And because I think that they fear what comes next, which is the doctor saying, hey, this is just anxiety or you're having a panic attack, go home. Walter, I want to get a message in from another long hauler, Susan from Needham. I am a COVID long hauler. I just passed the one year mark of being exposed to COVID on March 20th, 2020. My question is, I am wondering if there is any research being done on the effects of COVID on the hippocampus.

I am losing my cognitive mapping where I can be driving down the street or I go into a grocery store that I've shopped in for 30 years and I have absolutely no idea where I am. It's as if I have never been in that store in my life. And I know I am not the only one. I've read many articles of other people who are also experiencing these episodes

of cognitive mapping loss. So I was wondering if there's anybody looking at that. Thank you. Could it be cognitive? memory loss. Yes, definitely. I mean, the memory is what people are complaining about. Now, if you think about it, you know, if you have a fever and you have the flu, you're not thinking as quickly, your memory is not as good. We know there are so many things that can influence memory and certainly fatigue, sleep, if you're having sleep trouble, and potentially even the effects

of the virus. So we don't know is whether this is, you know, an autoimmune. reaction that's been set up by having the virus, whether it's a disturbed immune system. We don't actually even know if the virus is still hiding there somewhere triggering these troubles. But the memory problems, the tension problems, concentration trouble, that is what you see in people who have numerous rheumatologic conditions, post-concussion. And so there's lots of factors that could be causing that. We have to kind of get at the bottom of it. This is Science Friday from WNYC Studios. I just have a couple of more questions.

I'd like to get to them from our listeners. I want to talk about the vaccines and how they might interact with COVID long haulers because I want to play a call that we got from Ann and San Diego. Anne suspects she had COVID in March 2020 but did not get tested so she doesn't. doesn't know for sure. The worst symptoms were deep, very painful muscles.

After about eight months, I still couldn't lift either arm to the level of my shoulder. I had the Moderna vaccine starting in January, and it finished in February. And I had one in one arm and one in the other. And at that point, all of the pain went away. This seems pretty bizarre, doesn't it? Do we know if the vaccine is altering people's long-haul symptoms? You know, I think we've heard those type of stories multiple times, and so if that's true, I think that's fantastic,

that there's some clue there to these symptoms if it goes away after the vaccine. Now, what's the clue? The obvious one is there's some virus still in the body, and the vaccination then, you know, revs up your immune system and gets rid of the virus. But there's lots of other possibilities. It could be the vaccine resets your immune system. There are also people who have, the symptoms have gone away, but then they come back four or five days later. So I think we need to get, you know, we really, this is great, you know, you have to

look around, listen to the patients, as David said, and they can provide the clues. But, you know, this is the one clue that seems worth following up in terms of studying. people before and after they get vaccinated and then see if there's a reaction to the vaccine that's related to improvement. That could help everybody with this condition. But I think at this point in time, then we have to kind of get more kind of rigorous data to that point. Well, in getting the data then, would you recommend that long haulers get vaccinated? So maybe they could be tracked. Oh, absolutely. I think that almost everybody should get vaccinated, the exclusion for a vaccination of very almost non-existent.

I want to ask you both this question starting with you, David. It seems like there are a lot of mysteries around long COVID. If you could get the answer to any piece of this puzzle that would really change how you do your job, what would you like to learn? Well, this may sound very reductive and very simple, but leading right back to when I mentioned that word, the pathophysiology of long COVID. We are currently managing symptoms. We are currently using our best guess at rehabilitation approaches, and those rehabilitation approaches are working, albeit slowly. I think that we could just become so much more targeted both with therapeutics and rehabilitation if we understood why this is happening in the body.

So, I mean, if I could snap my fingers and understand one thing, it would be what is happening in the body that is causing this physiological change that is leading to this incredibly debilitating, multi-system, multi-symptom condition. Once we understand why it's happening, then we can think about targeted treatments as opposed to more generalized treatments. Walter, same question to you. Well, I have the same answer with a different twist, and that is that what I would like to know is what's the difference between those people who have the same degree of illness from COVID who get better quickly

versus those who don't get better for months and months. And I think this is the opportunity we have to get at that. I think that's going to shed a lot of light on this problem and potentially other, you know, conditions like MECFS. I'd like to end with one question from Katie or a statement and a question from Washington State. Is this a life sentence? Because I got sick a year ago and I was in New York City and I moved myself across America. I got treatment in Seattle and now I'm in Wenatchee, Washington, and I'm still doing miserable. So I would just like to know, is there hope for us out there? Research is hope.

There's hope through research. We have to get to the bottom of it to help people. You can't lose hope. I've never heard anybody, any researchers say they have enough money to do what they need to do. But I'm going to ask you, Walter, with this new cohesive approach, is there enough money being thrown at it to create this network that you're talking about? Well, we don't throw money here at NIA. Isn't that the truth?

Well, that's why I asked, I said. I've never heard a site to say, I have enough money to do anything. Yeah, well, Congress realized this was a problem, and they appropriated $1.15 billion for this problem, and that's really given us a chance to go at it in a big way. So this is a real substantial research initiative, thanks to the wisdom of Congress. David, how do you answer that question for yourself? I would agree I've been absolutely overwhelmed by the responsiveness of the NIH, the CDC, the Social Security Administration reaching out to my team, asking for data, asking, you know,

for anything that they can do to understand this problem and get at this problem. So, you know, I think that I've never seen this level of cooperation across health systems, across government agencies, I really hope that that continues. I really hope that we can all just, you know, make a concerted effort to work together to really unlock these puzzles so that individuals, such as the last caller who are really concerned, is this a life sentence? We can give them some hope. You know, I totally agree with Walter where there's research, there's hope, you know, we're working as fast as we can. This is a brand new condition. And the more that we can all organize to together and be collectivist in our approaches, the better chance we have to help these people out.

Well, I hope we have given some people some hope today. We've certainly given them a lot of information, and I want to thank both of you for taking extra time to be with us today. Dr. Walter Karachetz, Director of the National Institute of Neurological Disorders and Stroke in Bethesda, Dr. David Petrino, Director of Rehabilitation Innovation for the Mount Sinai Health system in New York, New York. Thanks again for taking time to be with us today. Thank you. Thank you. And if you want to hear a longer version of this conversation, we had so much more to talk about. Go to our website, ScienceFriday.com slash long haulers. Charles Berkust is our director. Our producers are Christy Taylor, Katie Feather, and Kathleen Davis, senior producer Alexa Lem.

Our contributing editor is John Dan Koski. B.J. Leideman composed our theme music. One last thing, before we go, we're celebrating Citizen Science Month throughout April, and we've partnered with the Great Sunflower Project for a Pollinator Palooza. Yeah, so find out more on our website, Sciencefriday.com slash citizen science. Have a great weekend. I'm I reflato.