Critical Aspects of Long COVID

In this episode of Buffalo HealthCast, we dive into the world of long COVID with two distinguished experts, Dr. Sanjay Sethi and Dr. Jennifer Abeles. 

Join us as we discuss the challenges faced by patients and healthcare providers and uncover the importance of research and studies being conducted at the University at Buffalo. Whether you're a healthcare professional, a patient, or simply interested in learning more about long Covid, this episode offers valuable insights and practical advice.

Tune in for an engaging and informative conversation that sheds light on the critical aspects of long Covid and the efforts being made to advance our knowledge.

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Transcript

Nada Fox: 0:06

Welcome to the buffalo health cast the official podcast of the University of Buffalo School of Public Health and Health Professions. Today, we're exploring long COVID with two of the experts. Dr. Sanjay Sethi, Deputy Director of University at Buffalo's Clinical and Translational Science Institute and Dr. Jennifer Abeles co director for long COVID Recovery Center, internal and pediatric medicine at the University of Buffalo Jacobs School of Medicine and biomedical science, whether you're a healthcare professional, affected by long COVID, or just curious, this episode is full of valuable insights, sit back, relax and join us on this podcast. Let's get started. Thank you both so much for joining us today. Before we get into it, can we do an introduction into long COVID For those who are not real familiar, what exactly is long COVID.

Dr Jennifer Abeles: 1:01

So long COVID are symptoms that occur after having had COVID occur about three months after having the infection that can't be explained by any other underlying medical issues.

Dr Sanjay Sethi: 1:16

So essentially, most in most cases, you know, the symptoms will disappear. And some they persist, and some actually new symptoms appear. So it's, you know, it's not just that the COVID never recovers. I mean, that's a common scenario, but also sometimes it might get better, and then they start having new problems, which again, as revealed, as Dr Abeles said, it can't explain otherwise.

Nada Fox: 1:37

How common is long, long COVID among individuals who

Dr Jennifer Abeles: 1:37

Documentation right now is about 6% of people who have COVID will develop long COVID, that number has changed over time, it's been as high as I believe factor set the 11%. And I've seen as low as 3%. So it seems to be variable at times, but 6% is what I've seen published most recently, have had COVID 19.

Dr Sanjay Sethi: 1:45

Yeah. And just to add to that, you know, yeah, it is extremely variable and varied. I would add to it. We've all right. I guess it also, to some extent depends on when and how you look for it. So earlier, if you look at people at three to six months after they had the acute COVID, seen anxiety and depression. I mean, that could be because of you're going to have a larger proportion if you look at six months to a year out. So people do recover. And then you know, the numbers are, are less than so about 6%, I think is a really good estimate. Today. the COVID, long COVID Or could be a part of the long COVID. You

Nada Fox: 2:28

significant portion of the population. Wow. What are the most common symptoms associated with long COVID.

Dr Jennifer Abeles: 2:35

The most common ones we hear about are fatigue, fatigue, both at rest fatigue with exertion. Brain fog, is another one people talk about confusion, memory loss, see a fair amount of that. And what is interesting is that some shortness of breath, some pulmonary symptoms, cough, some sleep disturbance. We've seen other things, we've seen some cardiac issues, most commonly called pops where they have different studies done in different parts of the country, really high heart rates, and they feel like they're going to pass out or they actually do pass out some of the more common ones. But there are a lot of symptoms of long COVID that we get complaints about or people describe. including ours, they all kind of show the same pattern. So

Nada Fox: 3:14

How soon after the initial infection do symptoms of obviously it's you know, there's something consistent about the patterns of the disease. Of course, it's mainly a respiratory disease when it's acute. But long COVID long COVID typically appear like how do we start distinguishing initial COVID infection versus long COVID infection? Interestingly, is much more of what you would think is more of

Dr Jennifer Abeles: 4:12

I think as Dr. Sophy mentioned, some people will have COVID They'll get better from the infection and continue to have some symptoms. Some people recover completely from long from COVID and then develop new symptoms about three a neurological problem with the fatigue, the brain fog, you months after two to three months after having had COVID. They completely recover and then develop symptoms. So it's variable. When the symptoms start for each individual know, the difficulty concentrating, and also the patient and what it is some people will develop new symptoms like the brain fog, the fatigue, some people will get worsening of chronic medical issues they already had before having COVID autonomic dysfunction. So it's very individualized. You can't say all people with long COVID present this way.

Dr Sanjay Sethi: 4:57

You know, I think we have to be a problem, because the symptoms are kind of nonspecific. So, you know, fatigue is can happen because of other reasons, you can have difficulty concentrating because of other reasons. So we always have to make sure that not something else is not going on. So, you know, people shouldn't just assume I had COVID, and I'm having this problem, this is long COVID, we see that quite often. And then we try to dispel that notion because and also look for other reasons, because the last thing you want to do is miss something which is treatable and and related to their medical problems, or their medical problems, rather than the COVID. itself.

Nada Fox: 5:33

Are there any specific like criteria or tests that we use to diagnose long COVID?

Dr Jennifer Abeles: 5:39

we wish there were specific tests used to diagnose long COVID, a lot of the testing that's done, I mean, we see patients that have had a huge amount of testing, I think that's one of the biggest frustrations, they have all sorts of bloodwork, it doesn't really show very much. That's abnormal, they have all sorts of cardiac workups, that are relatively normal, they have all sorts of imaging and diagnostic testing, and it's normal. And I think that's one of the biggest frustrations is people have a lot of testing. And in the end, the testing looks normal, but they still have these very distinct symptoms that we attribute to long COVID.

Dr Sanjay Sethi: 6:18

So there's no specific diagnostic tests, most of these are what we call rollout, you're looking for other things. And in any other part of the reason we don't have a specific diagnostic test is because you don't understand it fully and you know, and maybe different ways by which people get along COVID. So I think that's definitely a challenge we have,

Nada Fox: 6:40

yeah, I saw on the UB long COVID site, there is a registered registry survey form that people can complete. Are you hoping that that'll kind of lead to more diagnostics, criteria for it,

Dr Jennifer Abeles: 7:00

we actually started our long COVID work. Through the survey, we wanted to evaluate the individuals of the Western New York area to see who was being affected by long COVID. So before we ever started the recovery center, that was a research project, we started, where people can go online and still are going online and filling out the survey and giving us information about themselves when they had COVID, how many times they've had COVID, how bad their COVID was, treatments, they've gotten, you know, their medical history, it's very, it's a very comprehensive survey. So they start that way. And then based on doing the survey, they can be evaluated at the recovery center if they choose to. That's where we provide the treatment component of the long COVID.

Dr Sanjay Sethi: 7:49

And you know, of course, we we would like to develop diagnostic tests. But right now it's more of understanding the spectrum and and then introducing these people into other research studies, which hopefully can help us define the disease better. This is becoming clear that the standard diagnostic testing is not going to give us a test that's going to work. So I think we will, as we understand it better. Hopefully, there are other tests that are

Nada Fox: 8:14

Are certain populations more at risk for developed, which are more specific, you know, and somehow can diagnose the problem better. developing long COVID.

Dr Jennifer Abeles: 8:26

We have not found that yet that there's a certain population, we do know that certain groups are more engaged in the long COVID survey and Recovery Center. And we're trying to actually enhance the availability and the knowledge to all community members of the Western New York area. So I have not seen that certain individuals groups are more likely to get long COVID Just more people are more likely to look for support and treatment for long COVID.

Dr Sanjay Sethi: 9:03

Right. I mean, there's a suggestion that the literature and women get it more frequently than men, there is that suggestion in the literature that's not like, you know, the, say the higher incidence and women by the looks of it. And, and the second thing or maybe that, and again, that's one of anecdotal observations that people will take preexisting, autoimmune kind of conditions, those people seem to be somewhat more predisposed to getting the symptoms worse or new develop new problems after after COVID. But that is somewhat anecdotal, and yet completely healthy people without any problems can also develop long COVID.

Nada Fox: 9:42

So we're still learning in real time about that

Dr Jennifer Abeles: 9:45

every day.

Dr Sanjay Sethi: 9:47

Absolutely. And I'm building the bridge as we walk on it, you know, trying to understand and manage it at the same time.

Nada Fox: 9:54

That sounds like a very simple task. What impact is long COVID have on the daily lives and functioning of those affected.

Dr Jennifer Abeles: 10:04

I mean, the effects for some individuals is profound, we have seen numerous people who are no longer able to do their jobs. I mean, that is not uncommon for people to need support, and to apply for disability to just be so overwhelmed by the symptoms, you know, when you can't do your activities of daily living without getting exhausting. So there's no way that you can perform your job the way you did before you have long COVID. Even people who don't have support from family, I mean, it's it's profound, how affected some people are their entire world turns upside down. And this is, I think one of the hardest things is you take people who were relatively healthy before having COVID. And you they go through the COVID infection, and they end up with long COVID. And they can't do anything the way they did it before. And I think that's one of the hardest realities, to work with them to kind of learn the new norm for them, and how they can live in that. And that's where a lot of the anxiety and depression comes from, because it's really relatively sudden.

Dr Sanjay Sethi: 11:15

Yeah, absolutely. I mean, again, there's a spectrum, like the spectrum of the disease is a spectrum of impact. And, as was mentioned, there are some severely impacted others, you know, unless impacted, but still, it's a problem. I mean, it could be something like, you know, that some people never recover their sense of smell and taste, which may not seem, which becomes a big deal if it's with you for a very long time. So things like those. And so, Spectrum exists, and, and, you know, we just have to be cognizant of that.

Nada Fox: 11:50

That sounds heartbreaking as somebody that loves food. And I consider myself a foodie, you know, the idea of not being able to smell or taste that would break my heart.

Dr Sanjay Sethi: 11:59

I know.

Nada Fox: 12:00

Oh, especially now that we got to James Beard nominated restaurants in Buffalo heartbreak. Alright. So what are some of the current theories about why long COVID occurs?

Dr Jennifer Abeles: 12:13

Oh, that's a loaded question. Yeah, let you take that one to start.

Dr Sanjay Sethi: 12:19

Yeah. So there are several theories. First of all, you know, after viral infections, other viral infections, people also use to develop these kind of problems, you know, a small proportion. So it's not, it's kind of known that this can happen after any kind of virus infection, but because we have so many people with COVID, and because the infection was so, so prevalent, and so, so much more impactful, we've seen you no longer with suddenly has become a big part of a conversation. So the thinking is a bit again, because you don't know it, there are several theories. And it could be that not necessarily one pathway is the one that's causing it. So it could be like, one of them is like, Is it some kind of an immune dysregulation, so your immunity gets out of whack because of the infection. And because of that, you know, it doesn't come back to where it's supposed to be and then starts impinging or attacking other organs of the body. So some some form of autoimmunity. That's one of the speculations or theories. The second is some people, you know, there's some evidence of persistent viral infection, that somehow the viral the virus persists in parts of the body and is driving the infection. So that's driving the symptoms. And that's been thought about things like changing the microbiome, you know, there is some nice data showing that changes in the gut microbiome could also be can be described in these people. And that could be also in some way implicated in the development of the problems. So I think it's going to be multifactorial. And there may be different mechanisms, and not necessarily just one, but those are some of the current theories. Jenny, you want to add to those? I'm trying to think there are others out there too.

Dr Jennifer Abeles: 14:04

That's more recently I've been reading about where there's a breakdown in blood brain barrier. So all right, usually, things in the blood cannot get into the brain, in human and what they're assessing that there is a breakdown, and so that they're getting into the brain matter, and that's affecting some of the neurologic, that we see. That's one of the newest ones I've just read about.

Dr Sanjay Sethi: 14:30

And I would add to it chronic inflammation in different parts of the body, though. It's interesting when we do the standard markers of inflammation there many of them like things like ESR and CRP, they're often not raised, but that doesn't mean that they there is not tissue inflammation that that is driving it. So that's another, you know, tied in with the immune function and dysfunction. That's another hypothesis behind what's driving long COVID

Nada Fox: 14:55

What treatment options are currently available for those suffering from long COVID Is there any treatment?

Dr Jennifer Abeles: 15:02

I mean, it's slowly coming out. Some of the things that we have seen, and we are starting to use here at the Recovery Center are related to like chronic fatigue syndrome, that treatment where you do physical therapy exercise, but in a very distinct method, where you're exercising in a very slow controlled manner to not overwhelm the individual, because too much exercise actually causes harm for some of these people. So you really have to be very careful in the type of physical therapy that you prescribe, providing the social support for these individuals. So they feel that they have that emotional and component, and then occupational therapy, or relaunching how they think about their daily life, things that they do that occupy their daily life, and changing their perception on how to engage in those things in a meaningful way, but in an adaptive way that they can handle those stresses, there's no particular medication that I'm aware of that's been recommended at this point.

Dr Sanjay Sethi: 16:08

So yeah, you know, several things have been tried. But they're all in kind of clinical trials stage, many time things are being repurposed, or people are trying, for example, giving the antivirals to see if that makes a difference. A study we may launch soon as giving IV immunoglobulin to modify the immune system. So then there are many other studies going on with with other kind of treatments that are used for not for specified for COVID. But were being used for other things. And now they're being tried over here. I think, at this point, if one is has the problem, and there are trials that are open and available, that's the best way to be, you know, get the opportunity to get treated, because unfortunately, as like everything else that was done a lot of you know, unproven treatments out there that people are offering without any evidence, which could even actually make things worse. So. So I think, given the fact that

Nada Fox: 18:01

Well, based on both of your experience with patients, there is no specific treatment, I think getting involved in what are some of the biggest challenges they have in managing their long COVID?

Dr Jennifer Abeles: 18:12

I think one of the biggest challenges for research studies where there are things being tried is the best the individual patient is really getting the providers that they see family members to understand that they have a true illness. I option. But that all the attention to it, I'm I think think that's a huge frustration when we get patients into the recovery center. It's one of the first times they hear, we hear we're pretty convinced that in the next, you know, me take two you, we know you're suffering, and the patient's frustration in saying I have told my primary I told my specialists, and they three years that we will at least develop treatments for just, you know, think it's made up, they don't think it's real, and that they don't patients don't feel supported by their some of them. And As Jenny mentioned, we're doing family. Because again, you can't say, oh, look, here, I've had a Rehabilitative Services, kind of, but in a very, in a very heart attack, I've had a stroke, the patient looks the same to them. And the patient doesn't feel heard, and they don't feel specific way. And very personalized way. I think that supported. And that's a huge frustration for someone who's really struggling with their health to not feel like other we know, at least, if done properly, will not do any harm. people are hearing them and supporting them in the method that they need.

Dr Sanjay Sethi: 19:08

And, you know, I'm totally agree but also for So I think that's what I would recommend for almost any the providers is difficult for people like us also, it's difficult not being able to have the lack of having a specific, a individual today without reservation, with the caveat diagnostic test and be specific treatment is a challenge. So, that it has to be personalized and and managed by somebody who you know, so that that becomes a challenge in the provider aspect of you. But yeah, patients, you know, I agree, clearly being knows what they're doing. But beyond that, in terms of heard being supported, is important. And I think that would be a good place to start. And also having maintaining hope medications, nothing specific at this point. because a people do improve with time. And be as I said, there is so much going on that it's just a matter of time before we find something that's going to work from it not maybe not all but a good number of people.

Nada Fox: 19:54

So what do you think is crucial for people to understand about long COVID

Dr Jennifer Abeles: 19:58

I think people need to understand that long COVID has affected a lot of people in our community. It's something that we, as medical professionals are actively trying to better understand. So that we can discover proper treatments that will help everybody and support people as we go through these research trials and clinical trials to help people and that people need to know that there is hope that they will get better, we will figure out more with time, we figured out a huge amount of information already just dealing with COVID, and then well on COVID. But we just need more time to work with individuals and as a community of researchers and medical professionals to come together to find the solutions for everybody.

Dr Sanjay Sethi: 20:51

Yeah, very well said. And I would just add, I mean, I always say look at, for example, the HIV epidemic when it came on, we had no hope No, no, no good treatments, didn't really fully understand it, and see where we are today where it's become a chronic, manageable, you know, disease. So I'm hoping that that's what will transpire here. Again, I don't want to people to think that long cord and HIV are similar. They're not. But you know, the concept of when enough attention is paid by physicians and researchers on a certain disease. I think, you know, things happen. And so I really do anticipate that's going to be the case over here. So I think the whole part of it, we definitely want people to maintain that.

Nada Fox: 21:39

All right, well, here at UB, we have the long COVID Recovery Center, which you both are a part of. And you mentioned your multidisciplinary team, I heard you mention physical therapists, occupational therapists, are there any other disciplines that y'all bring in when working there,

Dr Jennifer Abeles: 22:01

we have a social worker here as well, that is working with our individuals who need mental health support, as well as figuring out disability and things of that nature that may be very new to individuals, trying to provide that social support with social worker to help them we do bring in, or we do send our patients to specialists, as indicated by each person's unique physical needs and complaints so that we make sure we're seeing the whole patient,

Nada Fox: 22:33

how does the community access, get access to the long COVID Recovery Center,

Dr Jennifer Abeles: 22:41

the best place is to go online and do the long COVID survey. That is the best entry point you do that. And then Sarah actually looks at all of those results. And then we'll reach out to patients and ask if they want to be at the Recovery Center, and help to facilitate getting them an appointment. And at that point,

Dr Sanjay Sethi: 22:59

right. I mean, that actually is the best way because the survey not only just, you know, provides us a good mix, mix mix helps us to make sure that they meet the, you know, the definition of long COVID but also gives us like a baseline of where they are. And then we in the survey, we actually are now going back to people six months out and 12 months out and every kind of every six months to see where they are going next. So I think really, that to us is the best way to to get involved in the Recovery Center. We're also doing several outreach, you know, outreach activities, especially in the underrepresented communities and in the in the inner city communities to you know, to get them involved because sometimes they don't really have access to all this information as readily as, as others do. So the between the outreach and the survey, those are ways to really get involved.

Nada Fox: 23:59

How can family members and friends and loved ones best support someone who is dealing with long COVID

Dr Jennifer Abeles: 24:05

is like any other medical issue, I think just accepting the patient or the in that family member as they are and just accepting them at their word that I'm sick and being supportive and saying what can I do to help you just like you would do with anybody else who perhaps you can actually see the illness? Just say, Okay, you have long COVID What do you need from me? What can I do to help you? Can I take you to appointments? Can I help you with making meals, things of that? I think that would go a long way to support a person who's suffering in their own way. And the acknowledgement of saying, Okay, I'm here to help you.

Nada Fox: 24:47

Are there any steps that we can take to potentially reduce our risk of developing long COVID

Dr Jennifer Abeles: 24:55

We know that research shows that getting your COVID vaccine It is an important step in preventing individuals from getting a sick with COVID. And it also does prevent people from getting long COVID. So vaccination, continuing with that mindfulness of getting your vaccines as updates come out to protect yourself, especially our older individuals over 65, making sure they're getting their vaccines, if people are sick, being good about being sick and staying away from others, and, you know, protecting our friends and our loved ones by staying home, and we know we should stay home.

Nada Fox: 25:36

Right. And now, again, that is long COVID Recovery Center here at UVI. As a sounds like a valuable, invaluable resource for our community to you know, you have just a small task of you know, the diagnosis and the treatment, the support all of those things. Is there anything that you would recommend for the individuals struggling with lONG COVID? Like, how, besides reaching out over the survey and anything? Is there any way? How do we get the people suffering with long COVID? The family members that are trying to support these individuals dealing? And how and winking them with you? Is there any other way besides the online survey? Can they send an email? Can they call? Is there anything like that, that they can do,

Dr Jennifer Abeles: 26:24

they can send an email, we do have an email, we use calling again, can be done. But it's I think, very cumbersome, because then it requires a call back and then asking the questions and asking them to do the survey. So they could email but again, doing the survey and at least getting started on that would be the easiest one because again, Sara will reach out to somebody who hasn't finished it, perhaps they got too tired to do that. And they can she can support them and helping them to finish it as well. We have had some individuals who had to be called, and they did the survey online. And Sarah helped arrange that, as well.

Dr Sanjay Sethi: 27:07

And you know, also, I think, people, I mean, if they are having these unexplained symptoms, having the conversation with the primary care physician is important, you know, not to just ignore them, but have a conversation with them. Many times the primary care physicians can at least do a lot of the baseline testing to see make sure that that is not something else, you know, that that has been missed. And, and then and then you know, then going ahead and getting involved with the Recovery Center is the way to go today. And, you know, we're hoping to, you know, actually putting in for a large grant from the quarry to see if we can, we can package this whole rehabilitative approach, tested, and also make it available more widely across Western New York. So the funding proposal is still working on it. So we'll come to know later in the year, whether we did get the support, and that'll actually enable us to do more outreach and treat a larger number of people. So we're hopeful for that. But I think in any case, you know, the there will still be opportunities within the recovery and center. And, and the other thing is to look for research studies, you know, the recent study is going on. And then if you think you meet the criteria get involved. So anyway, we're gonna move this field forward.

Dr Jennifer Abeles: 28:25

And that's one of the nice things if you do the survey, we actually provide a monthly newsletter that goes out to all the individuals who've done the survey, just with up to date information, newest research studies, he was findings, really trying to have that back and forth, and provide individuals with continued to support what's the newest research. And if there's a new research study that's available locally, and they meet the criteria, they will receive an email indicating the information and giving them the choice to participate if they want. So again, the survey does more than just provide us with information. It's a two way street providing information on a monthly basis back to the individuals who've completed the survey as well as the ability to get involved in different research studies that are available locally, that they might choose to be involved with, if they find that that would benefit them.

Nada Fox: 29:19

Going forward would would you like primary care to kind of start referring any suspected like long patients long COVID patients like do you think that would be like a good

Dr Jennifer Abeles: 29:29

I'm like that per se that I do primary avenue. care physicians can do a lot of the beginning workup outside of the long COVID Recovery Center, you know, the basic labs that we run, if there's cardiac symptoms, evaluating that are respiratory symptoms, because again, we don't want to repeat things that have already been done. If an individual comes to us and says I've already been my primary care doctor and they've sent me these other specialists. We will get that information and look at it. We don't want our Uh, you know, recreate the wheel take people's time to do all these things. Again, we're looking to have a collaborative response with the patient and the doctors that they've already seen.

Dr Sanjay Sethi: 30:11

And, you know, finally, I mean, there's no way we can just have the one Recovery Center to take care of all of these individuals. So, so I think, yeah, the plan would be to develop, you know, as as knowledge becomes better as our treatments become better and a diagnosis, you know, we would be, we hope to be in the center of trying to disseminate this information out to the primary care providers, so that they actually get empowered to deal with, you know, a good number of these individuals.

Nada Fox: 30:37

Well, thank you so much for your time today. Is there anything else you'd like to share with our listeners about long COVID that we haven't covered?

Dr Sanjay Sethi: 30:47

I would just say stay tuned as it lots to come.