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Tonight this aired on PBS NewsHour in the United States. PBS continues to provide informative and sensible coverage on long Covid.
What the latest research tells us about long COVID’s most common symptoms
Transcript
John Yang: According to government data, more than 100 million people in the United States have had Covid. For most of us, it's meant a few miserable days. But for about 15% of those who have gotten the virus it's meant prolonged symptoms: What's come to be known as long Covid. More than 3 years into the pandemic, physicians and research are still struggling to understand a lot of things about the condition. Laura Synthanem, our News Hour health reporter, has written a lot about long Covid.
Laura, one thing they've had trouble with is defining it. Actually, what it is. There was a study in the Journal of the American Medical Association recently, that tries to take a step toward a definition.
Laura Santhanam: That's exactly right. So researchs at Mass General Brigham in Boston surveyed thousands of long Covid patients and basically asked them to tell them, "What are your symptoms?" What they found were really echoing a lot of what you hear from people who have been dealing with long Covid, right? They took 37 symptoms, whittled them down through infection history and statistical modeling into these 12 symptoms that they say form the hallmark of long Covid. Things like brain fog, brain fog, chronic cough. Also this thing called post-exertional malaise. So, say you get up to walk across the room or you read a recipe to make supper on night. It just wipes you out. Things that people used to [be able to] do without even thinking about, now they're just completely exhausted. And it just really points to how transformation this disease is, and we're just beginning to understand it. Researchers call this an attempt to create a common language on how to understand this disease.
Yang: Is there any correlation between long Covid and vaccination status?
Santhanam: According to this study, there is evidence that supports that. They took these different survey responses from different long Covid patients and broke them into four different clusters. Looking at types of symptoms and also severity. And people who tended to have the worst symptoms and outcomes and just sort of all of it were those who didn't have their full primary series, so two doses of Moderna or Pfizer (or what have you) and had also been infected with Covid multiples times. So that combination is really rough for people who then end up with long Covid.
Yang: Now, some Covid experts have reservations about this study. What are their concerns?
Santhanam: You know, one of the big concerns about this study is that we're still so early in this process. The researchers themselves, when I ask them, they say, "This is not a diagnostic tool." You don't take this study and then diagnose someone one way or another with long Covid. What it does do is forms a common langauge about how we can talk about this disease. Create clinical trials to then better understand, what are the treatments that we should be using for people who are sick with this? And then ultimately work towards creating diagnostic tests. Giving someone a test and then saying, do you have this or not? Another thing that researchers will also tell you (told me) is that they didn't use lab data to see if these people did in fact have long Covid. It's just self-reported survey data, which has its limitations in that respect. But, you know, another step in this process would be taking, do they have an immune response that suggests they have these sorts of disorders?
Yang: Now, you've talked to (for your reporting on this website) you've talked to a lot of people who are experiencing long Covid. What did they tell you about not only their experiences, their symptoms, but about getting about medical care?
Santhanam: Yeah, it's been such a struggle for so many people. And many of them have felt adrift in the healthcare system, many for as long--for years. One patients who I talked to said that if you are lucky enough to find a physician who will listen to you, that's going a long way. But so many times, they are just sort of rou--it's like a round-robin of medical care trying to find someone who will listen to them instead of just saying it's all in your head and then get the kind of care that they need. A lot of them describe their care as trial-and-error. Many of them go to Facebook groups. They describe the wait for post-Covid care centers as being 6 months or more. The waitlists certainly support those stories. And it's just really been a struggle for people, who again, so many of them struggle to just get up and walk across the room, much less, try and get transportation, childcare, their whole life in order so they can get an appointment that takes months in the making.
Yang: Earlier you mentioned looking for antibodies in some of these people. What else needs to be done, or what else is being done, to further understand this condition, and also, figure out the best ways to treat it?
Santhanam: That's a really great question. That's one of the things that this study supports. Looking at these 12 symptoms. How can we treat those symptoms and design clinical studies that are targeting those symptoms? And then see what happens when we do. Are there areas where we need to certainly do more research? Or looking at long Covid in pediatric patients? And looking this disease in pregnant people? And those are certainly part of this broader RECOVERY initiative from the National Institutes of Health which this study is also a part of. But there's certainly a long way to go and long Covid patients have been waiting a very long time to get there.
Yang: Laura Santhanam, thank you very much.
Santhanam: Thank you.
What the latest research tells us about long COVID’s most common symptoms
Transcript
John Yang: According to government data, more than 100 million people in the United States have had Covid. For most of us, it's meant a few miserable days. But for about 15% of those who have gotten the virus it's meant prolonged symptoms: What's come to be known as long Covid. More than 3 years into the pandemic, physicians and research are still struggling to understand a lot of things about the condition. Laura Synthanem, our News Hour health reporter, has written a lot about long Covid.
Laura, one thing they've had trouble with is defining it. Actually, what it is. There was a study in the Journal of the American Medical Association recently, that tries to take a step toward a definition.
Laura Santhanam: That's exactly right. So researchs at Mass General Brigham in Boston surveyed thousands of long Covid patients and basically asked them to tell them, "What are your symptoms?" What they found were really echoing a lot of what you hear from people who have been dealing with long Covid, right? They took 37 symptoms, whittled them down through infection history and statistical modeling into these 12 symptoms that they say form the hallmark of long Covid. Things like brain fog, brain fog, chronic cough. Also this thing called post-exertional malaise. So, say you get up to walk across the room or you read a recipe to make supper on night. It just wipes you out. Things that people used to [be able to] do without even thinking about, now they're just completely exhausted. And it just really points to how transformation this disease is, and we're just beginning to understand it. Researchers call this an attempt to create a common language on how to understand this disease.
Yang: Is there any correlation between long Covid and vaccination status?
Santhanam: According to this study, there is evidence that supports that. They took these different survey responses from different long Covid patients and broke them into four different clusters. Looking at types of symptoms and also severity. And people who tended to have the worst symptoms and outcomes and just sort of all of it were those who didn't have their full primary series, so two doses of Moderna or Pfizer (or what have you) and had also been infected with Covid multiples times. So that combination is really rough for people who then end up with long Covid.
Yang: Now, some Covid experts have reservations about this study. What are their concerns?
Santhanam: You know, one of the big concerns about this study is that we're still so early in this process. The researchers themselves, when I ask them, they say, "This is not a diagnostic tool." You don't take this study and then diagnose someone one way or another with long Covid. What it does do is forms a common langauge about how we can talk about this disease. Create clinical trials to then better understand, what are the treatments that we should be using for people who are sick with this? And then ultimately work towards creating diagnostic tests. Giving someone a test and then saying, do you have this or not? Another thing that researchers will also tell you (told me) is that they didn't use lab data to see if these people did in fact have long Covid. It's just self-reported survey data, which has its limitations in that respect. But, you know, another step in this process would be taking, do they have an immune response that suggests they have these sorts of disorders?
Yang: Now, you've talked to (for your reporting on this website) you've talked to a lot of people who are experiencing long Covid. What did they tell you about not only their experiences, their symptoms, but about getting about medical care?
Santhanam: Yeah, it's been such a struggle for so many people. And many of them have felt adrift in the healthcare system, many for as long--for years. One patients who I talked to said that if you are lucky enough to find a physician who will listen to you, that's going a long way. But so many times, they are just sort of rou--it's like a round-robin of medical care trying to find someone who will listen to them instead of just saying it's all in your head and then get the kind of care that they need. A lot of them describe their care as trial-and-error. Many of them go to Facebook groups. They describe the wait for post-Covid care centers as being 6 months or more. The waitlists certainly support those stories. And it's just really been a struggle for people, who again, so many of them struggle to just get up and walk across the room, much less, try and get transportation, childcare, their whole life in order so they can get an appointment that takes months in the making.
Yang: Earlier you mentioned looking for antibodies in some of these people. What else needs to be done, or what else is being done, to further understand this condition, and also, figure out the best ways to treat it?
Santhanam: That's a really great question. That's one of the things that this study supports. Looking at these 12 symptoms. How can we treat those symptoms and design clinical studies that are targeting those symptoms? And then see what happens when we do. Are there areas where we need to certainly do more research? Or looking at long Covid in pediatric patients? And looking this disease in pregnant people? And those are certainly part of this broader RECOVERY initiative from the National Institutes of Health which this study is also a part of. But there's certainly a long way to go and long Covid patients have been waiting a very long time to get there.
Yang: Laura Santhanam, thank you very much.
Santhanam: Thank you.
