Post by Nadica (She/Her) on Jul 10, 2024 23:51:58 GMT
It’s Official: Long COVID Is a Chronic Disease - Published June 21, 2024
A new 265-page report from the National Academies of Sciences, Engineering, and Medicine, commissioned by the Social Security Administration, confirms what some scientists have long suspected: Infection from COVID can lead to lingering symptoms and long-term, possibly permanent disability. The report officially categorizes long COVID as a chronic condition that requires new and better ways to diagnose it, treat it, and help pay to manage it as we continue to learn to co-exist with the threat that this ever-mutating virus brings to us, now and in the future.
Symptoms of chronic COVID, per the report, include shortness of breath, cough, persistent fatigue, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea. These symptoms may present as diagnosable conditions including interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, postural orthostatic tachycardia syndrome (POTS), and more.
To understand the current and long-term implications of this new report, we spoke to Ziyad Al-Aly, M.D., the director of the Clinical Epidemiology Center at the VA St. Louis Health Care System in Missouri, one of 14 researchers and clinical experts who were tapped to create this wide-ranging document.
HealthCentral: What is the genesis of this study?
Ziyad Al-Aly, M.D.: About two years ago, we started seeing a lot of patients with long-lasting COVID symptoms. I think the Social Security Administration (SSA) took notice of this uptick in people with long COVID and wanted to know more about it, and the science supporting the idea that this could be a long-lasting condition. SSA tasked the National Academies {of Science, Engineering, and Medicine} to assemble a panel of high-level researchers and clinicians {including myself} to sift through the evidence and make sense of it.
HC: And the report identifies long COVID as a chronic illness?
Dr. Al-Aly: Yes, that’s 100% correct. The committee found that long COVID is a complex chronic condition that affects multiple body systems. But because there’s no specific test for it, many people who have experienced it never get a formal diagnosis. We’re just beginning to learn about this complex disorder, what causes it, and how we can help people who develop it.
HC: Why do people develop such varying symptoms with long COVID? Is it random? Or does the virus exploit pre-existing weaknesses?
Dr. Al-Aly: The short answer is that we don’t completely understand this, although we have a few theories. One is that long COVID is more common in people who are already prone to chronic inflammation, and that the infection increases that existing state. The second hypothesis is that the immune system somehow becomes dysfunctional after a COVID-19 infection, and as a result, people experience all these different symptoms. Third is the hypothesis of viral persistence, that some people just can’t completely fully clear the virus from their systems. And the fourth major theory is this idea of microbiome dysbiosis {a decrease in diversity in our microbiome, a.k.a., our guts, which house the bulk of our immune systems, with an increase in pro-inflammatory organisms}. We actually have tons more bacterial cells in our body than human cells. They’re very important to normal, healthy bodily functioning. And when we get sick, guess what? They get sick, too, and in some people these bacterial communities can’t restore themselves back to full health. There is some evidence that this continuing dysbiosis is what really drives chronic disease.
HC: Who is most likely to develop long COVID?
Dr. Al-Aly: We found that the risk of long COVID increases with the severity of the COVID-19 infection. People sick enough to go to the hospital are two-to-three times more likely to develop long COVID than people with milder cases. And people who needed respiratory support in the hospital were twice as likely to develop it as those who didn’t need that support. But long COVID can develop even in people with mild cases. And because there are so many more people with mild disease, they make up the majority of long COVID cases, {currently estimated to be 17 million adults and 6 million children in the U.S.}.
HC: How can you reduce your risk of getting long COVID?
Dr. Al-Aly: The biggest thing you can do to avoid developing long COVID is to avoid getting a COVID-19 infection in the first place. That means staying up to date on vaccines and boosters as they are adjusted to target new variants. The vaccine you got at the beginning of the pandemic is not going to be effective anymore. Also, avoid being around people who are showing symptoms of COVID-19. And if you get it, call your provider to see if you qualify for antivirals, because those could also reduce the risk of developing severe disease and going to the hospital. Avoiding hospitalization is really important, and that should be a multi-pronged approach. So, first is primary prevention: Avoid exposure and get vaccinated. Then, if you do get it, get adequate treatment.
HC: Women are diagnosed with long COVID in higher numbers. Why does this disparity exist, in your view?
Dr. Al-Aly: Again, largely unknown. However, women are much more prone to autoimmune diseases, and that might play into it.
HC: What did you learn about long COVID in children and teens?
Dr. Al-Aly: Well, the good thing is that long COVID is less common in kids. The report found that it’s probably in fewer than 2% of children who develop COVID-19. Having said that, it’s not inconsequential {for the estimated 6 million American kids who have it}. Long COVID can impair their ability to learn and matriculate in school and impair their educational attainment. It can hamper {a young person’s} ability to develop friendships and enjoy sports or music. Their social circles can shrink at a time when kids should be making friends and exploring new hobbies and activities. We have very little knowledge of whether long COVID will have any long-lasting effects on children. We just don’t have the data.
HC: How is it possible that long COVID symptoms are so different for everyone?
Dr. Al-Aly: This is really what’s puzzling about it. It can happen in almost any organ system. It can have kidney manifestations, brain stuff, things going on in the GI tract. It’s very clear in the data and very, very clear in the clinic. But why is this happening? Well, let’s look at our theory of viral persistence. Viral persistence alone probably doesn’t do much of anything, but it can provoke chronic inflammation. And chronic inflammation can attack or produce injury in multiple tissues, because the immune cells are circulating in the blood. And guess what? All your organs are perfused by blood. So, {these are} dysfunctional immune cells that can destroy tissues; they are carried by blood that perfuses the heart, the brain, the kidneys, and the GI tract. I think this really argues more for either chronic immune dysfunction or viral persistence with chronic inflammation as potentially the leading mechanistic pathways for tissue injury and subsequent disease.
HC: Do doctors have all the information they need to correctly diagnose long COVID?
Dr. Al-Aly: In short, no. I describe myself as being humbled by this virus and still in a learning phase about it. You have to remember, this is a new entity. In 2019 we didn’t even have SARS-CoV2, much less long COVID. This whole thing is less than five years old. We don’t have anything close to long-term data. Unlike most chronic diseases, like diabetes for example, we don’t have any biomarkers or specific tests to confirm whether someone has long COVID. We can only diagnose it by looking at the history and the symptoms. Having said that, I’m a glass-half-full kind of person—I am optimistic that biomarkers will be identified; in fact, there is some interesting early research going on in that area now. Not just markers of inflammation but advanced imaging modalities that can look at the brain and heart of someone with long COVID.
HC: What about treatment for long COVID?
Dr. Al-Aly: Again, we are still learning. Right now, treatment is primarily managing the symptoms rather than going for the pathophysiology {the disordered processes that drive disease}. If a patient has tachycardia {a too-fast heart rhythm}, we can give beta blockers for example. We can also give Paxlovid for extended periods of time to eradicate any persistent virus. In fact there are several Paxlovid trials going on now. Other people are looking at anti-inflammatories, biologics, and even microbiome restoration. We really have to do more because people are hurting. They want answers yesterday! We have to get to the bottom of this.
HC: Does long COVID ever go away?
Dr. Al-Aly: We just don’t have long-term data. The committee found that most people do get better and usually within a few months. But the data also tell us that recovery slows down as time goes on and plateaus after a year. If you ask me what will happen to the long COVID patient 10 years down the road, I would have to say, I don’t know, because it hasn’t been around for 10 years. We can’t even say what might happen seven years down the road, or even five. We just don’t know.
HC: What does the U.S. government need to do to address and aid the millions of Americans who are living with long COVID symptoms?
Dr. Al-Aly: Well, that kind of answer is beyond my role in this report. But we did find that some of the symptoms and health effects associated with long COVID can be severe enough to interfere with your day-to-day functioning, including work. Some of the impairments on Social Security’s current listings do overlap with the effects of long COVID, like heart and lung function. But three of the big problems—post-exertional malaise and chronic fatigue, post-COVID-19 cognitive impairment, and autonomic dysfunction—might not be, even though they significantly affect someone’s ability to participate in school and work. Social Security asked for our best advice and our best thinking, and that is what we gave them. I’m a scientist and a doctor trying to learn as much as I can so I can help my patients. But my hope—and obviously I do not speak for Social Security—is that this report will facilitate a better understanding of the condition by the public and the Social Security Administration so Americans can get the services and support they need.
A new 265-page report from the National Academies of Sciences, Engineering, and Medicine, commissioned by the Social Security Administration, confirms what some scientists have long suspected: Infection from COVID can lead to lingering symptoms and long-term, possibly permanent disability. The report officially categorizes long COVID as a chronic condition that requires new and better ways to diagnose it, treat it, and help pay to manage it as we continue to learn to co-exist with the threat that this ever-mutating virus brings to us, now and in the future.
Symptoms of chronic COVID, per the report, include shortness of breath, cough, persistent fatigue, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea. These symptoms may present as diagnosable conditions including interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, postural orthostatic tachycardia syndrome (POTS), and more.
To understand the current and long-term implications of this new report, we spoke to Ziyad Al-Aly, M.D., the director of the Clinical Epidemiology Center at the VA St. Louis Health Care System in Missouri, one of 14 researchers and clinical experts who were tapped to create this wide-ranging document.
HealthCentral: What is the genesis of this study?
Ziyad Al-Aly, M.D.: About two years ago, we started seeing a lot of patients with long-lasting COVID symptoms. I think the Social Security Administration (SSA) took notice of this uptick in people with long COVID and wanted to know more about it, and the science supporting the idea that this could be a long-lasting condition. SSA tasked the National Academies {of Science, Engineering, and Medicine} to assemble a panel of high-level researchers and clinicians {including myself} to sift through the evidence and make sense of it.
HC: And the report identifies long COVID as a chronic illness?
Dr. Al-Aly: Yes, that’s 100% correct. The committee found that long COVID is a complex chronic condition that affects multiple body systems. But because there’s no specific test for it, many people who have experienced it never get a formal diagnosis. We’re just beginning to learn about this complex disorder, what causes it, and how we can help people who develop it.
HC: Why do people develop such varying symptoms with long COVID? Is it random? Or does the virus exploit pre-existing weaknesses?
Dr. Al-Aly: The short answer is that we don’t completely understand this, although we have a few theories. One is that long COVID is more common in people who are already prone to chronic inflammation, and that the infection increases that existing state. The second hypothesis is that the immune system somehow becomes dysfunctional after a COVID-19 infection, and as a result, people experience all these different symptoms. Third is the hypothesis of viral persistence, that some people just can’t completely fully clear the virus from their systems. And the fourth major theory is this idea of microbiome dysbiosis {a decrease in diversity in our microbiome, a.k.a., our guts, which house the bulk of our immune systems, with an increase in pro-inflammatory organisms}. We actually have tons more bacterial cells in our body than human cells. They’re very important to normal, healthy bodily functioning. And when we get sick, guess what? They get sick, too, and in some people these bacterial communities can’t restore themselves back to full health. There is some evidence that this continuing dysbiosis is what really drives chronic disease.
HC: Who is most likely to develop long COVID?
Dr. Al-Aly: We found that the risk of long COVID increases with the severity of the COVID-19 infection. People sick enough to go to the hospital are two-to-three times more likely to develop long COVID than people with milder cases. And people who needed respiratory support in the hospital were twice as likely to develop it as those who didn’t need that support. But long COVID can develop even in people with mild cases. And because there are so many more people with mild disease, they make up the majority of long COVID cases, {currently estimated to be 17 million adults and 6 million children in the U.S.}.
HC: How can you reduce your risk of getting long COVID?
Dr. Al-Aly: The biggest thing you can do to avoid developing long COVID is to avoid getting a COVID-19 infection in the first place. That means staying up to date on vaccines and boosters as they are adjusted to target new variants. The vaccine you got at the beginning of the pandemic is not going to be effective anymore. Also, avoid being around people who are showing symptoms of COVID-19. And if you get it, call your provider to see if you qualify for antivirals, because those could also reduce the risk of developing severe disease and going to the hospital. Avoiding hospitalization is really important, and that should be a multi-pronged approach. So, first is primary prevention: Avoid exposure and get vaccinated. Then, if you do get it, get adequate treatment.
HC: Women are diagnosed with long COVID in higher numbers. Why does this disparity exist, in your view?
Dr. Al-Aly: Again, largely unknown. However, women are much more prone to autoimmune diseases, and that might play into it.
HC: What did you learn about long COVID in children and teens?
Dr. Al-Aly: Well, the good thing is that long COVID is less common in kids. The report found that it’s probably in fewer than 2% of children who develop COVID-19. Having said that, it’s not inconsequential {for the estimated 6 million American kids who have it}. Long COVID can impair their ability to learn and matriculate in school and impair their educational attainment. It can hamper {a young person’s} ability to develop friendships and enjoy sports or music. Their social circles can shrink at a time when kids should be making friends and exploring new hobbies and activities. We have very little knowledge of whether long COVID will have any long-lasting effects on children. We just don’t have the data.
HC: How is it possible that long COVID symptoms are so different for everyone?
Dr. Al-Aly: This is really what’s puzzling about it. It can happen in almost any organ system. It can have kidney manifestations, brain stuff, things going on in the GI tract. It’s very clear in the data and very, very clear in the clinic. But why is this happening? Well, let’s look at our theory of viral persistence. Viral persistence alone probably doesn’t do much of anything, but it can provoke chronic inflammation. And chronic inflammation can attack or produce injury in multiple tissues, because the immune cells are circulating in the blood. And guess what? All your organs are perfused by blood. So, {these are} dysfunctional immune cells that can destroy tissues; they are carried by blood that perfuses the heart, the brain, the kidneys, and the GI tract. I think this really argues more for either chronic immune dysfunction or viral persistence with chronic inflammation as potentially the leading mechanistic pathways for tissue injury and subsequent disease.
HC: Do doctors have all the information they need to correctly diagnose long COVID?
Dr. Al-Aly: In short, no. I describe myself as being humbled by this virus and still in a learning phase about it. You have to remember, this is a new entity. In 2019 we didn’t even have SARS-CoV2, much less long COVID. This whole thing is less than five years old. We don’t have anything close to long-term data. Unlike most chronic diseases, like diabetes for example, we don’t have any biomarkers or specific tests to confirm whether someone has long COVID. We can only diagnose it by looking at the history and the symptoms. Having said that, I’m a glass-half-full kind of person—I am optimistic that biomarkers will be identified; in fact, there is some interesting early research going on in that area now. Not just markers of inflammation but advanced imaging modalities that can look at the brain and heart of someone with long COVID.
HC: What about treatment for long COVID?
Dr. Al-Aly: Again, we are still learning. Right now, treatment is primarily managing the symptoms rather than going for the pathophysiology {the disordered processes that drive disease}. If a patient has tachycardia {a too-fast heart rhythm}, we can give beta blockers for example. We can also give Paxlovid for extended periods of time to eradicate any persistent virus. In fact there are several Paxlovid trials going on now. Other people are looking at anti-inflammatories, biologics, and even microbiome restoration. We really have to do more because people are hurting. They want answers yesterday! We have to get to the bottom of this.
HC: Does long COVID ever go away?
Dr. Al-Aly: We just don’t have long-term data. The committee found that most people do get better and usually within a few months. But the data also tell us that recovery slows down as time goes on and plateaus after a year. If you ask me what will happen to the long COVID patient 10 years down the road, I would have to say, I don’t know, because it hasn’t been around for 10 years. We can’t even say what might happen seven years down the road, or even five. We just don’t know.
HC: What does the U.S. government need to do to address and aid the millions of Americans who are living with long COVID symptoms?
Dr. Al-Aly: Well, that kind of answer is beyond my role in this report. But we did find that some of the symptoms and health effects associated with long COVID can be severe enough to interfere with your day-to-day functioning, including work. Some of the impairments on Social Security’s current listings do overlap with the effects of long COVID, like heart and lung function. But three of the big problems—post-exertional malaise and chronic fatigue, post-COVID-19 cognitive impairment, and autonomic dysfunction—might not be, even though they significantly affect someone’s ability to participate in school and work. Social Security asked for our best advice and our best thinking, and that is what we gave them. I’m a scientist and a doctor trying to learn as much as I can so I can help my patients. But my hope—and obviously I do not speak for Social Security—is that this report will facilitate a better understanding of the condition by the public and the Social Security Administration so Americans can get the services and support they need.