What Does The Future Look Like For COVID-19 Long-Haulers?
This story is a part of Science Friday’s coverage on the novel coronavirus, the agent of the disease COVID-19. Listen to experts discuss the spread, outbreak response, and treatment.
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.
We asked our listeners on our Science Friday VoxPop App to tell us their experiences with Long COVID.
Michael from Kansas City: “I started showing COVID-19 symptoms back at the beginning of November 2020. I had flu-like symptoms for a couple 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.”
Cynthia from Massachusetts: “I got COVID-19 in December… I didn’t know I had it till I landed in the hospital and they said that’s what I had… it affected my legs mostly, which are getting much better, but they’re not back today I’m not back to the way I was.”
Katherine from Chicago: “I had COVID-19 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 want to know if this is going to be my new reality forever.”
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.
**Editor’s Note: This story was updated on April 9, 2021 at 4:45pm to correct Amy Watson’s name and that she coined the term “long haul COVID”. A doctor and fellow long-haul Covid patient from the UK, Elisa Perego, coined “long Covid”.**
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Walter Koroshetz is director of the National Institute on Neurological Disorders and Stroke at the National Institutes for Health in Bethesda, Maryland.
David Putrino is the director of Rehabilitation Innovation at Mount Sinai Health System in New York, New York.
IRA FLATOW: 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 they’re left with long lasting complications.
These patients are being called COVID long-haulers. And it’s estimated that somewhere between 10% and 30% of people who get COVID are stuck with lasting effects. We asked our listeners on our SciFri VoxPop app to tell us their experiences with long COVID.
MICHAEL: 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 then it cleared up.
About a week into the experience, I lost my taste and smell. My taste has slowly come back. But it’s now March 2021, and I still can’t smell anything.
CYNTHIA: 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.
CATHERINE: 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 want to know if this is going to be my new reality forever.
IRA FLATOW: 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 Koroshetz is director of the National Institute of Neurological Disorders and Stroke in Bethesda. Dr. David Putrino, director of Rehabilitation Innovation for the Mount Sinai Health System in New York. Welcome both of you to Science Friday.
WALTER KOROSHETZ: Thank you, Ira. Pleasure to be here.
DAVID PUTRINO: Yeah, thanks for having us.
IRA FLATOW: 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?
DAVID PUTRINO: 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, 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.
IRA FLATOW: You know, we say when you have COVID, you have typical symptoms. But there are so many symptoms here, could it be almost anything?
DAVID PUTRINO: Yes. So far we’ve been tracking over 60 distinct symptoms. And they really do run across the entire body. They’re multi-organ. They’re multisystem.
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, when in the context of these symptoms.
IRA FLATOW: Autonomic nervous system means, for our listeners?
DAVID PUTRINO: 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, when your hair should stand on end, and 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.
IRA FLATOW: At what point did it become clear that there was something strange going on, with regard to long-term effects of COVID?
DAVID PUTRINO: 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.
They’ve 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.
IRA FLATOW: Interesting. Dr. Koroshetz, I want to ask you about this new study that’s getting a lot of attention. Researchers found that, in the US, a third of the people who had COVID developed a psychological or neurological condition within six months. This is pretty shocking. Is it not?
WALTER KOROSHETZ: Well, I think, as David mentioned, there’s this syndrome of people still having trouble. In the beginning, it was a stressful event, particularly if you’re in the hospital or an intensive care unit. And now when people are not recovering, it’s even greater stressful event.
And so, yes, I think most of the groups– and David could talk to this– are 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, are not performing as you would have expected, in terms of their cognitive abilities. And they’re telling you that, because their main complaint is 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 in COVID, when you go into that severe stage and you’re in the hospital, and then you maybe 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 nonhospitalized patients. And 35% of them did not return to baseline health, two to three weeks after their test was positive. And if that was influenza, one would’ve expected 90% would have been recovered by that time point.
Ahead of that, there are a number of studies from Europe of people who are hospitalized. And there the rates are higher of having persistent trouble the sicker you are. But, clearly, the numbers is going to indicate that most of the people with trouble– because most of the people don’t go in the hospital. Most of the people [INAUDIBLE] were never even in the hospital.
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 sequelae of COVID. It’s a very boring technical term, but it kind of means what it is, says what it is.
And so we are going to develop a national program to follow people who have 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 we don’t know the natural history of this. If this was mononucleosis, maybe it wouldn’t have been so surprising. Kids will lose a year of school with mono. But we just don’t know the natural history of recovery from these folks, who are having persistent symptoms. And we need to know that.
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 that 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.
IRA FLATOW: 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?
WALTER KOROSHETZ: 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.
Some places, as you hear from David, they have clinics, where they’re seeing patients. And some clinics are diving deeper into the neurology and the cognitive functions. Some was digging deeper into the cardiac issues or the renal or GI issues.
And so we want to have that kind of deep dive into these potential pathological causes but also coordinate it all. So you can compare, among the different cohorts.
And we’re looking for cohorts, put together amount to almost 10,000 people, who have these post-acute COVID symptoms, and then control populations. So we’d like to compare the person who had COVID who gets better versus the patient with COVID who didn’t get better. And this is our opportunity to try and nail this down.
IRA FLATOW: 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 VoxPop 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.
ANNIE: Is there any cures for the lack of smell, which affects your taste?
WALTER KOROSHETZ: 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 will 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.
IRA FLATOW: 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 1. Here’s what Amy had to say.
AMY: 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 15 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.
IRA FLATOW: David, do you have an answer to that?
DAVID PUTRINO: 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 the 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 more than 12 months.
So I think that, that is the time frame 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 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 is 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.
IRA FLATOW: Can you give me an idea about what rehab looks like?
DAVID PUTRINO: 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 dysautonomia, the autonomic nervous system being thrown out of balance.
And when you look into the literature surrounding how to rehabilitate individuals with dysautonomia, 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 dysautonomia, 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 of 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. But we won’t, because we’ve 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.
The next thing that we work on is breath work. We use breath work coaching as a kind of prehabilitation.
Now one of the most consistent findings that we have found so far in our population is that individuals who are experiencing long-haul symptoms are hypercapnic. What that means is that their carbon dioxide levels are low, when they’re breathing out into a device called a capnograph that we have in the clinic.
What that is typically a sign of is that their breathing rate has slightly increased. They’re blowing off a lot of carbon dioxide. And it’s worsening a lot of the symptoms that they’re experiencing.
So we brought on a team of certified breathwork coaches to work with our long-haulers. And what we’ve seen is that these breathwork coaches– they work on assisting patients in improving their CO2 retention, so slowing down their breathing rate, encouraging gentle breath holds in certain situations that increase the amount of CO2 in the system, as well as increasing CO2 tolerance, so increasing the person’s ability to tolerate more CO2, without becoming anxious or air hungry and increasing their breathing rate.
Once they’ve gone through this prehabilitation phase then we move into a rehabilitation phase. Now, we had to build a custom autonomic reconditioning rehabilitation protocol. We based it off of existing protocols that have really solid literature behind them.
But they actually had too intense of a starting point, because we noticed our patients were too debilitated. So we built in our own starting points, which start exercise at a much lower level.
And we slowly build up the intensity of the exercise in a graded fashion, based on biometrics and well-validated scales of perceived exertion, to get people to a point where slowly, over time they can tolerate exercise again. They are feeling far less fatigue. And a lot of their symptoms feel a lot more under control.
IRA FLATOW: And the percentage of patients, you said, who actually are improved after your treatments?
DAVID PUTRINO: 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%.
IRA FLATOW: That’s very, very interesting Walter, is there a certain demographic that seems to be hit harder by neurological symptoms after COVID?
WALTER KOROSHETZ: There is certainly from the reports that are out there– there are more females than males, in most of the reports of people with suffering post-acute sequelae COVID.
IRA FLATOW: David, could there be a lot more people, who are suffering symptoms out there and don’t know that they’re long-haulers?
DAVID PUTRINO: 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 don’t realize that it’s something that they can seek help over or, in fact, don’t feel safe seeing a physician to describe their symptoms.
A lot of 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 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 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.
IRA FLATOW: Could you be asymptomatic to begin with, and then suddenly, your system turns around, and you become a long-hauler, and you don’t have any idea what’s going on?
DAVID PUTRINO: This has certainly been reported. And I think it’s been reported on a large enough scale for us to say, yes, this is a possibility.
One of the things that we’ve been thinking about from this point of view– and it is just a theory at this point. But rather than talking– you will often hear the media talking about people who had non-severe COVID going on to get long-haul symptoms.
And we tend to shy away from that terminology, because many people had quite severe symptoms. But almost across the board– so, again, referencing our data, around 4% of our population were hospitalized for their COVID-19– acute COVID-19 symptoms. But the remaining 96% were not.
And one of the things that we’ve been thinking about, more recently, is the idea that perhaps we could characterize these individuals as passively treated. So these were individuals who got an acute COVID-19 infection, were told, stay home. Drink lots of fluids. Don’t come to the hospital, because we’re not going to admit you. Take Tylenol and rest.
And what may have been happening while they were resting and recovering was the intense inflammatory response that we know that occurs during many COVID-19– acute COVID-19 infections– was the precipitating factor that has now thrown this system into turmoil and is giving them a lot of their long-haul symptoms.
WALTER KOROSHETZ: I’d say that from our point of view, I think one thing that David said is really important that I’m trying to develop treatments that will help people. This is the time to do it. I think the chances of things helping are going to be in the short time frame after the infection.
There is a condition called myalgic encephalomyelitis/chronic fatigue syndrome, which we’ve been working on for a number of years. And it’s been a really tough nut to crack to understand what’s going on.
But the symptoms are almost identical to what you hear in a lot of the post-acute sequelae COVID folks. And so I think this is our opportunity to try and understand what is wrong in the post-acute state of COVID. But I think it could also have a tremendous effect on the people who are suffering with ME/CFS all these years.
Many of them started after an infectious illness. But you don’t find out about it for a year or two later. You don’t know what the infection was. You don’t have the chance to study it, like we have now in COVID.
So this, I think, is a golden point in time to try and understand this condition and try and help people.
IRA FLATOW: Walter, I want to get a message in from another long-hauler, Susan from Needham.
SUSAN: I am a COVID long-hauler. I just passed the one year mark of being exposed to COVID on March 20, 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.
WALTER KOROSHETZ: I’m not exactly sure what she means by “mapping loss.”
IRA FLATOW: Could it be “cognitive memory loss?”
WALTER KOROSHETZ: Yes, definitely. I mean, the memory is what people are complaining about now. If you think about it, 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 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, attention 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 get at the bottom of it.
IRA FLATOW: Many of the symptoms– and this is just a layperson, me talking– that you describe, David– I’ve heard many people with different kinds of autoimmune diseases talking about these symptoms. Whether there’s arthritis or celiac or something like that, they’re describing a lot of these things that are going on. Could this be an autoimmune disease that pops up, later on?
DAVID PUTRINO: I think that is absolutely a possibility. This is something that we’re keeping an eye on. I think that, as Walter said, there’s so many things that this could be right now. There are so many mechanisms by which this could be affecting the body.
And in fact, we may not be looking at one condition on its own. We may be looking at five conditions. And it just depended on what level of vulnerability your body was in, as to which condition and which bucket you fall under.
So you may have heard of a lot of different things that people have been talking about. So there is POTS dysautonomia. There’s ME/CFS, as Walter was mentioning. There is– you may have heard of Mast Cell Activation Syndrome being bandied about. And then a number of different autoimmune conditions or even the concept of pre-autoimmunity, where individuals predisposed to autoimmune disease– and these are autoimmune diseases that can be diagnosed with clinical testing.
But typically in the course of their autoimmune disease, just before they get the autoimmune condition in a way that it can be clinically diagnosed, they enter a state of pre-autoimmunity, where their system is moving in a lot of different directions. But all of their medical tests are returning negative. There’s nothing that really shows up, when they’re being tested.
So right now, we’ve tried to– speaking for our clinic and what we’re trying to do, we’ve tried to shy away from labeling the illness in any particular direction. We’ve focused instead on being as symptom-centric and patient-centric and interdisciplinary as possible.
We are collaborating with some truly extraordinary people– both at the NIH, the CDC, at other universities– to try to share samples, share ideas, conduct joint research together, in order to understand what’s called the pathophysiology, which is what is actually happening to our physiology that is causing these symptoms.
But until then, I think, what we really need to do is encourage physicians and other clinicians to just listen to the patients. Listen to their lived experiences. Read all of the literature around common solutions to common problems that are brought about by all of these conditions that I just named. And try some of these interventions out, in a way that is productive and helpful to the patient.
IRA FLATOW: 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 in San Diego.
Ann suspects she had COVID in March 2020 but did not get tested. So she doesn’t know for sure.
ANN: 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.
IRA FLATOW: Walter, this seems pretty bizarre. Doesn’t it? Do we know if the vaccine is altering people’s long-haul symptoms?
WALTER KOROSHETZ: No, 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 is some virus still in the body. And the vaccination then revs up the 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– this is great. You have to look around and listen to the patients, as David said. And they can provide the clues.
But 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 was 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– and we have to get more kind of rigorous data to that point.
IRA FLATOW: Well, in getting the data then, would you recommend that long-haulers get vaccinated so–
WALTER KOROSHETZ: Yes.
IRA FLATOW: –maybe they could be tracked?
WALTER KOROSHETZ: Oh, oh, absolutely. I think that almost everybody should get vaccinated. The exclusion for vaccination are very– almost nonexistent.
IRA FLATOW: 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?
DAVID PUTRINO: Well. [LAUGHS] 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 multisystem, multi-symptom condition.
Once we understand why it’s happening, then we can think about targeted treatments, as opposed to more generalized treatments.
IRA FLATOW: Walter, same question to you.
WALTER KOROSHETZ: 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 conditions, like ME/CFS.
IRA FLATOW: I’d like to end with one question from Katie, or a statement and a question from Washington state.
KATIE: 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.
WALTER KOROSHETZ: 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.
IRA FLATOW: 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?
WALTER KOROSHETZ: Well, we don’t throw money here at NIH?
DAVID PUTRINO: [LAUGHS] Isn’t that the truth?
IRA FLATOW: Well, that’s why I asked. I said, I’ve never heard a site to say, I have enough money to do anything.
WALTER KOROSHETZ: Yeah, Congress realized this was a problem. And they appropriated $1.15 billion for this problem. And that’s really given us the chance to go at it in a big way. So this is a real substantial research initiative, thanks to the wisdom of Congress.
IRA FLATOW: David, how do you answer that question for yourself?
DAVID PUTRINO: 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 for anything that they can do to understand this problem and get at this problem.
So 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 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.
I totally agree with Walter, where there’s research, there’s hope. We’re working as fast as we can. This is a brand-new condition. And the more that we can all organize together and be collectivist in our approaches, the better chance we have to help these people out.
IRA FLATOW: 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 Koroshetz, director of the National Institute of Neurological Disorders and Stroke in Bethesda. Dr. David Putrino, 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.
DAVID PUTRINO: Thank you.
WALTER KOROSHETZ: Thank you.