Labeling and Long COVID

( John Minchillo / AP Photo )
File name: bl060322cpod.mp3
Brian Lehrer: It's the Brian Lehrer Show on WNYC. Good morning, again, everyone. There's a little good COVID news in our area. There's some indication that this latest Omicron surge might have peaked in New York City and vicinity where case numbers have fallen slightly or at least plateaued in the last week or so. With vaccines for young children on the horizon, treatments like Paxlovid for those most at risk for serious COVID and Evusheld for the immune-compromised, maybe it's time for, if not a sigh of relief, at least the beginning of the anticipation of a sigh of relief, even for those of us still happily masking in indoor public places.
Then there's long COVID when symptoms linger weeks, months, or years. There's also the prospect of even more transmissible variants coming along next, which are being reported as a possibility. We talked a little bit about long COVID last week and we return to it today to dig in a little more on whether we need new labels to describe what's really a broad range of symptoms and recovery times.
We're joined this morning by Dr Ben Abramoff, the director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine. Some people are even framing what they call medium COVID. We'll talk about that too. Dr Abramoff, thanks for coming on with us. Welcome to WNYC.
Dr Ben Abramoff: Thanks for having me, Brian.
Brian Lehrer: I see that long COVID has a clinical name now, which is post-acute sequelae or PASC as the diagnostic code, but how wide a range of symptoms does that cover?
Dr Ben Abramoff: It covers a very broad range of symptoms. Some are very mild. Some people have persistent loss of taste and smell, which for some people can be very life-altering. They are foodies. They can't go out to their favorite restaurants and appreciate it, or some of the foods they loved smell foul. Some patients are really fully debilitated by ongoing symptoms, really unable to leave the house or in some cases even get out of bed. Anywhere along that spectrum and many different variations we see in our clinic.
Brian Lehrer: Now, a producer at public radio station WHYY in Philadelphia wrote about her extended recovery and termed it medium COVID, which she found a helpful way to think about it as a distinct path to recovery that took weeks but the symptoms did end. You were one of the people she interviewed for that, I saw. Can you talk about what this medium COVID refers to?
Dr Ben Abramoff: Most people when we talk about long COVID, there's no one standard definition for what that is. Many of the definitions use three months. It's that time frame where people go from the natural recovery into this long COVID type phase. Most people recover within a week, two weeks, but there is a substantial group of patients within that few week to three month period that continue to have symptoms. There's really nothing that changes at that three-month mark. It's more of a continuum, a spectrum. Some patients do need weeks or even a few months to get over their COVID infection.
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
Brian Lehrer: We can take some calls, folks, for Dr Abramoff. Do you have a question about your post-COVID illness? 212-433-WNYC. Did you have something like medium COVID where you recovered, but it took longer than you expected? Call us with your questions at 212-433-WNYC or your stories and experiences that might be helpful to others, 212-433-9692 or tweet @BrianLehrer. Dr Abramoff, in your clinical practice, are you seeing distinct types of long COVID beyond just the length, beyond long and medium?
Oops, did we lose Dr Abramoff? We did. All right, we'll get him back in just a second, I'm sure. I don't know exactly what the problem was there, but in the meantime, I've seen various numbers for how many people who develop symptoms for COVID go on to develop some form of long COVID. I think Dr Abramoff has been quoted saying it's about 20%. I think we have you back now, right?
Dr Ben Abramoff: Yes, sorry about that.
Brian Lehrer: Sorry about that. Don't know what happened there. Let me go back to the question I was starting to ask when we got disconnected and that is if in your practice, besides the length of COVID, long, medium, whatever, are you seeing distinct types of long COVID?
Dr Ben Abramoff: I think we are. I think this is something that really needs more attention to be paid to it because as I hinted at before, it's not all one disease. A lot of people picture long COVID as this persistent fatigue. That's one of the more common manifestations, but other people have more of a weakness outcome.
Others have more difficulty with shortness of breath. In some cases, it seems to be a little bit different, whether these are patients who are recovering from more severe illness, in that they were hospitalized or in the ICU, versus people who had the more mild, acute courses. I think one thing that we have to do is start to break down this long COVID into more discreet subsets to better understand this condition.
Brian Lehrer: Yes. Last week we heard from a doctor who has patients who have taken years to recover. Is chronic COVID also a category?
Dr Ben Abramoff: I think that fits in with the long COVID category. We certainly see patients who have had symptoms going on for two years, since the beginning of the pandemic. We're hopeful with time they will continue to have gradual recovery. Most people even in the long-term continue to slowly recover, but we know with other infectious diseases, it can take a long time and some people do have persistent symptoms.
Brian Lehrer: Studies have found a heightened risk of developing diabetes after having had COVID. That's not really a COVID symptom, but do you think that will eventually link up with long COVID in research, or are some people just seeing something that might turn out to be a coincidence?
Dr Ben Abramoff: I think it's really difficult to say. There's so many people who have ongoing symptoms that for many of them, they're finally going to the doctor or they're asking for help. They're saying, "Hey, I'm not feeling good." To know whether that's
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
just because they're getting more of a intensive health workup versus having a new condition or whether COVID-- They had mild diabetes to begin with or underlying diabetes that was undiagnosed and their COVID precipitated it, I think it's still very early to say.
There's a number of conditions, even thyroid illness, that had suggested links to COVID. We just don't yet know whether that's a cause or more of a correlation.
Brian Lehrer: Let's take a phone call. Linda in Montvale, you're on WNYC with Dr Ben Abramoff. Hi, Linda.
Linda: Yes, hi. I just wanted to report that I've had COVID three times. I've been vaccinated and boosted twice. I lost my sense of taste on November two years ago. Everything else seems to return somewhat to normal, but the sense of taste it has never come back, but my sense of smell is more acute than ever.
Brian Lehrer: Dr Abramoff, have you heard stories like this, and do you have any advice for Linda?
Dr Ben Abramoff: Yes. A couple things to note. That's a common description that we hear from time to time, particularly this alteration of smell, so maybe not necessarily loss of smell, but things smell different or things that used to smell good, smell foul or overpowering. One thing to note too is that taste and smell are very closely related.
Oftentimes people who have changes in taste, it's really a manifestation of changes in their smell. There are some possible techniques albeit not great to treat loss of smell, whether that's medications or therapy that you can discuss with your doctor. There's some free resources online in terms of smell training that for some patients is helpful.
Linda: Thank you. I actually have tried that, and there hasn't been much of an improvement. Now, basically, I eat for texture, so things that are cold or things that are refreshing, things that are crunchy, but mostly everything has no taste. A little bit now is beginning to come back with some strong citrus, maybe a pineapple or something like that, but basically that's it. It's been really a struggle to try to mainstream myself back because I've lost interest in any of the activities that would be surrounding food because who cares. It's all like cardboard.
Brian Lehrer: Linda. Go ahead, doctor.
Dr Ben Abramoff: I was just going to say, and that's really an important thing to note. Some people are dismissive of the loss of taste and smell, but eating, going out to eat with friends, family, that's a really social part of our lives. To lose that, it can really take an emotional toll over time. Really pay attention to mental health and all that. Maybe talk to doctor. Seeing an ENT would be helpful, and there's maybe some treatments that could help as well, but it is a challenging after-effect of COVID and a effect of long COVID.
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
Brian Lehrer: Linda, I hope you do better. Thank you very much for your call. Another thing about Linda's story, we've all heard by now of people getting re-infected after they've had COVID 1. She said she's had it three times, and has been double-vaxxed, and I think she said double boosted. How common is that becoming, and are you seeing any evidence that maybe with each successive bout that it becomes milder because the antibodies from the previous COVID that you had, even if they don't protect you from getting some form of COVID again, protect you from getting it as seriously or anything like that?
Dr Ben Abramoff: Most of the patients that we see tend to have long COVID from their initial infection. Now it's not 100%, but that's more of what we see, and I think that having the antibodies and possibly the vaccinations has made a big difference in terms of preventing long COVID. For people who do have long COVID, their response to getting infected again is quite variable. Many patients report pretty significant relapse in symptoms when they get a repeat infection, but with time, anything that reduces that severity of the initial infection or of the subsequent infections tends to decrease the risk of having significant long COVID symptoms.
Brian Lehrer: Here's somebody who says she's having a positive side effect from having had COVID. Ruth in Rockland County, you're on WNYC. Hi, Ruth.
Ruth: Hi, Brian. Longtime listener, first time getting through. I just wanted to ask the doctor if he had any idea of any research or any information about COVID and seasonal allergies. I have been an allergy sufferer since eight years old, and as I've gotten older it seems to have gotten worse to where I would take Claritin-D 24 twice a day and Benadryl just to sleep at night. I've had COVID twice. Once during Omicron and once during Delta. My system went into overdrive.
I would get highs, my lips would blow up, I had idiopathic angioedema. This happened for months, but after getting the vaccine and booster this spring, I have not even sneezed. I have walked outside with dandelions flying everywhere. I have only had to take Claritin one time in three months. This is the first time in my life that I'm not suffering from seasonal allergies. I tried to look it up. I couldn't find any research on that. Do you know anything about that?
Brian Lehrer: It's been a bad allergy season, in general, this spring from everything I've heard. Dr Abramoff, can COVID make your allergies go away?
Dr Ben Abramoff: I have to confess that's the first time that I've heard that. We actually hear not infrequently patient who have allergies or remote history of seasonal allergies or asthma report that their symptoms really flare after COVID infection. I wonder if maybe are you wearing a mask outside when you're walking around?
Ruth: No, not as much.
Dr Ben Abramoff: I don't really have much- [crosstalk]. You just got lucky. I haven't heard that before.
Brian Lehrer: Interesting.
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
Ruth: I'll definitely take it. Yes.
Brian Lehrer: Ruth, thank you very much. All right. Well, maybe Ruth should sign up to be a volunteer in some study, or maybe we can do a little crowdsourcing here right now. Has anybody else had that experience? Because if this is the first that Dr Abramoff has heard of it, it's probably the first that the medical establishment is hearing of it. All our lines are full now, but if anybody wants to tweet @BrianLehrer if you too have had alleviation of your seasonal allergies after having COVID. Let's see if it's anyone but Ruth. Tweet @BrianLehrer. Meanwhile, let's go to another caller. Stephanie in Westchester, you're on WNYC. Hi, Stephanie.
Stephanie: Hi. What a pleasure to speak with you. I happen to turn on the radio which makes sense because I'm a long time listener too, but I was leaving a physical therapy appointment. It's my second, so I can't tell you about the result, but it is with a group that has been trained by a specific program that the Mount Sinai post-COVID clinic has designed, and it's intended to help-- I told your screener to reset my body. They have. If you tell me the list of the symptoms that many people have for long-haul COVID, that would be me.
I had COVID in February 2021, so this is meant to help get my autonomic nervous system back to working properly instead of irregularly because that's the other thing that long-haul COVID has, which is a scary word, dysautonomia as in dysregulation of the autonomic nervous system. Muscles aren't doing what they are supposed to, and there's lots of pain, but it flares up, and it goes away, and it doesn't make sense. Brain fog comes and goes and all that stuff. Then it's pretty interesting that the physical therapy aspect is available now too.
Brian Lehrer: Dr Abramoff.
Dr Ben Abramoff: I'm pretty familiar with that team from Mount Sinai and Dr Putrino who has helped develop a lot of those physical therapy programs, and they're really excellent from what I'm hearing. I think even some elements of that are going to be incorporated into some guidelines that are going to be coming out in the near future. I think it's important to note that even with a good program like that, every person who's undergoing a therapy program, it has to be individualized. There's no one-size-fits-all therapy program.
Some people who have more of breathing issues, there's breathing programs, relearning how to breathe control. For others who are more deconditioned from prolonged hospitalizations or at the ICU, they may need a different protocol. It's not one-size-fits-all, but we've found that customized individualized therapy programs can be very helpful. It's important to also be very cautious that the expert that you're seeing, the therapist that you're seeing has some understanding that they're not over pushing you or saying, "Hey, let's keep running more and more every week," because that can lead to some detrimental effects in people who have long COVID. Individualized customized therapy plan can be extremely effective.
Stephanie: Can I reply to that, because that actually is not responsive to what I'm
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
experiencing? In fact, I have breathing issues too. I'm an amateur singer, and I'm in a breathing program as well. This is physical therapy, and as far as I understand it, it is a literal program. It starts very gently. It starts with prone exercises while you're lying down. You do it for 30 seconds on each side of the body, and you breathe for two minutes using deep breathing exercises to reset the body, and you progress through only three exercises.
I'm at the very beginning. It's going to progress from prone to sitting, to standing, to incorporating aerobic exercise, not pushing at all. I'm sure it'll be tailored specifically to me at a certain point, but first, it's trying to reset the catching your breath kind of thing, which we do normally, but my heart rate will go very high for doing knee bends kind of thing while lying down. That shouldn't happen. We're trying to get my body back to normal. It's a bit different than what Dr Abramoff is responding to.
Brian Lehrer: Yes. A real bodywork approach. Interesting. Stephanie, thank you for sharing. Maybe that will help other people who haven't heard of that kind of thing but are struggling with long COVID or medium COVID and maybe want to ask their doctors about it. Well, you may not believe this Dr Abramoff, but we have quickly gotten two other people who said their allergies have gotten better after having COVID. One person writes, "Had COVID for the second time in December, this has been the most mild allergy season I've ever had. Not even taking medicine daily."
Someone else writes, "Had COVID in early April, and after the symptoms stopped, my seasonal allergies were gone for about two weeks." That makes it sound temporary but gone for about two weeks. "First time in years I stopped taking medicine and could breathe." I realized this is very anecdotal epidemiology, but interesting that we've had three people who've now told us this story. Maybe there's something to follow up on there scientifically.
Dr Ben Abramoff: Very interesting. We'll certainly pay attention to that in our clinic moving forward and see if we can get a pattern and maybe do a little bit of research on it.
Brian Lehrer: In the meantime, we're getting tweets from people with a variety of long COVID symptoms. One person writes, "Any statistics on post COVID, long COVID, severe persistent headaches?" Another one writes, "It's been one and a half years since I've had COVID, still very confused and big memory problems. Also, no smell or taste." We talked about smell or taste with an earlier caller. Here's a listener writing about confusion and memory loss and another one about headaches. It's such a variety of things.
Dr Ben Abramoff: It's really, again, the full spectrum of symptoms. In terms of headaches, it's not necessarily one of the most common-- it's common, but it's not one of the most predominant symptoms for many of our patients, but for those who had any type of preexisting headaches or chronic headaches before COVID, it is extremely common for those headaches to get worse. We do see many people who have new onset headaches as well.
Of course, it's always important to speak with your doctor, have a neurologic exam,
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
make sure nothing more serious is going on, but that is very common. Neurologic symptoms, in general, are common. What's often called the brain fog, confusion, memory issues, word-finding problems, concentration issues, that's one of the top three things we see in our clinic in terms of symptoms. Again, assuming that the workup by your doctor is negative, there are programs, there's rehabilitation programs that can be very helpful.
Neuropsychological evaluations can give better insight into the deficits that you're facing. Then, in some cases, medications can be helpful. It really depends on what's been tried and how much therapy the patient has gone through to determine what the best next steps are.
Brian Lehrer: Are there separate groupings that you've observed, and do you treat people differently through that?
Dr Ben Abramoff: Our treatment in our clinic is really focused on whatever symptoms that patients have, how do we make them feel better and treat palliatively? Unfortunately, at this point, we don't have treatments that attack the underlying mechanisms because frankly, we don't really truly understand the underlying mechanisms at this point. There's various theories in terms of inflammation, coagulation, and clotting, autoimmune issues.
We really don't truly know, at this point, what is causing it. There are observational studies that different things may attack those underlying mechanisms, but we don't know yet. They haven't really been shown through randomized controlled trials that they're effective. At this point, we treat the symptoms, and whether that's headaches, whether that's shortness of breath, whether that's brain fog, we address those one by one.
Brian Lehrer: We have a few more minutes with Dr Ben Abramoff from Penn Medicine on long COVID and medium COVID. Let's get at least one more call in here with yet another set of symptoms. Andrea in Manhattan, you are on WNYC. Hi, Andrea.
Andrea: Hi. I think I've heard the doctor mention earlier in the show that thyroiditis is one of the things you're seeing in long COVID. Is that true?
Dr Ben Abramoff: What was that?
Brian Lehrer: Thyroid effects, Andrea.
Dr Ben Abramoff: Thyroid effects. That's something that there's been some observational studies that say is there a connection or case series observing thyroid issues after COVID, but at this point, I don't think we have enough evidence to say it's a true connection, but it may be, and we're still learning.
Brian Lehrer: I hope that's helpful. What answers would make the biggest difference to your ability to help the patients in your clinic?
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
Dr Ben Abramoff: Understanding the mechanism, understanding what causes long COVID. There's lots of research. Obviously, for patients who are suffering, it can't happen fast enough. Trying to understand those mechanisms, but we still have more to learn.
Brian Lehrer: I wonder if you have any take or if this is not in your area, because you're in the practice of treating people with COVID. You're not maybe a public health official looking at the arc of the spread of the disease, like an epidemiologist. I mentioned in the intro that we're apparently seeing a plateau right now, at least in the greater New York area, in the number of new cases, new hospitalizations, new deaths that have come from this recent wave where we're in another one of those periods where people are saying, "Geez, everybody I know seems to have COVID."
Maybe we've at least hit that peak and it's going to just start to decline. I heard one expert say it was about seven weeks of gradual buildup to get to this point, so it's going to take another seven weeks or so to get back to the low point we were at, say, in early March, but then I saw a report on CNN that there are other variants kind of waiting in the wings, or not even waiting in the wings, but starting to take a greater percentage of the cases or be the greater percent-- slowly increasing percentage of the cases of Omicron that we're seeing.
Omicron BA.4, BA.5, maybe beyond that. We may be in for the same cycle that we've been in since January, at least through the summer. Do you have any indication from your practice or people you're talking to?
Dr Ben Abramoff: Yes, I know one thing that our practice and talking to my colleagues who also do this work, I think we're having a hard time really grasping this nature of the current wave. It certainly doesn't seem like the hospitalizations match or come close to the previous waves, but lots of people anecdotally are having COVID and a lot of people are home testing. I think in some cases the data doesn't really reflect that. I'm optimistic that this current wave and hopefully future waves with people already being infected, as you mentioned, and people being vaccinated has less of a public health effect, but as you mentioned, this is a little bit outside my area.
Brian Lehrer: I wonder if you think that the research that you are doing as a clinician, but also then, of course, research on what works for people with long COVID, offers promise to those suffering other chronic conditions like chronic Lyme disease or what is sometimes called chronic fatigue syndrome.
Dr Ben Abramoff: Yes, absolutely. I'm very hopeful that-- I know patients who have those conditions like chronic fatigue syndrome are very hopeful that the research going into long COVID will help them as well. Frankly, for a long time, those types of conditions were somewhat neglected in the health research world. I'm hopeful that not only will what we're doing help those with long COVID, but others with chronic fatigue and illnesses.
Brian Lehrer: Chronic fatigue syndrome, people with it don't even like it to be called that as opposed to its more clinical name, Myalgic encephalomyelitis, because
File name: bl060322cpod.mp3
File name: bl060322cpod.mp3
chronic fatigue syndrome leads people to say, "Oh, it's all in your head." Are you seeing that same kind of misattribution of this as an anxiety disorder to people with long COVID?
Dr Ben Abramoff: Yes, I think that's actually changed a lot over time, particularly with the increased intention from researchers, doctors, the media. When I first opened the clinic, when we first opened the clinic in 2020, over the summer, that was every patient's response. Many times, most of the time now, they're getting maybe still, "Hey, we don't know what's going on, we don't have a great answer for you," but they're not being told that it's all in your head or just go out and get some sunshine.
They're getting taken more seriously in most cases. A lot of times that's how they end up seeing us because their doctors refer them to us to say, "Hey, these are the next steps, and they can offer you maybe some other options." Although it is important to note, people who are chronically ill for months and months and months, that can cause depression, that can cause anxiety, but we generally don't think of it as the main cause of ongoing symptoms.
Brian Lehrer: There we leave it with Dr Ben Abramoff who directs the Post-COVID Assessment and Recovery Clinic at Penn Medicine. Thank you for all the information. I think this has been really helpful to a lot of people I could tell from our callers and tweets. Thanks a lot.
Dr Ben Abramoff: Thanks, Brian.
Copyright © 2022 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.