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All Podcasts Toolkit: What We Know About Long COVID

Toolkit: What We Know About Long COVID

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Description

Dr. Bob gets answers to your questions about long COVID from pulmonologist Lekshmi Santhosh and neurologist Jennifer Frontera. They cover who’s getting it, what treatments are available, why the vaccines seem to help some people, and much more on this Toolkit. Plus, Dr. Bob weighs in on the new CDC guidelines on masking.

 

Follow Dr. Bob on Twitter @Bob_Wachter and check out In the Bubble’s new Twitter account @inthebubblepod.

 

Follow Lekshmi Santhosh @LekshmiMD on Twitter.

 

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Transcript

SPEAKERS

Dr. Jennifer Frontera, Dr. Bob Wachter, Dr. Lekshmi Santhosh

Dr. Bob Wachter  00:09

Welcome to IN THE BUBBLE. I’m Dr. Bob Wachter. Before we get to today’s topic long COVID. Let me say a few words about the CDC guidelines that came out last week. I think they surprised a lot of us. First of all, let’s reflect on how these guidelines which markedly relax masking and distancing requirements, how they came about. They came about for one reason, and that is the miraculous effectiveness of our vaccines. As we think back over the last 18 months or so, COVID has delivered a lot of bad surprises. But the breathtaking effectiveness of the vaccines is something that we just have to be continuously thankful for. And I think about when the vaccines first came out, I just will never forget that moment in early November when we heard about the initial results from the Pfizer vaccine and it’s 95% effectiveness, and I literally jumped for joy.

Dr. Bob Wachter

Since that time, virtually all of the additional news and data that we’ve heard about the vaccines has been positive. We didn’t know how effective in real life we saw these clinical trials. But we didn’t know how effective in real life the vaccines would be in preventing cases, in preventing hospitalizations, in preventing deaths. We didn’t know for sure how safe they would be particularly after we followed people for a considerable period of time. We didn’t know how effective they’d be against managing the variance. We didn’t know, we said this over and over again. We didn’t know how effective they would be in preventing asymptomatic carriage of the virus and potential transmission. We didn’t know whether they work on kids.

Dr. Bob Wachter 

All of those questions have been answered and the answers have been yes, yes, yes, yes, yes. Amazingly effective in preventing mild cases and preventing hospitalizations, deaths. They are extraordinarily safe, even notwithstanding the J&J vaccine and the blood clots, we now know how amazingly rare they are. And most people in the US who’ve gotten vaccinated have gotten Pfizer and Moderna and those vaccines now have been used for we’re closing in on a year since the clinical trial started. And there is absolutely no evidence of long-term side effects from these vaccines, so amazingly safe.

Dr. Bob Wachter  02:31

Now the variants are here in a big way, the B 117. The UK variant is more than half the cases in the US and the vaccines are extraordinarily effective even against these nastier variants. We now know that they markedly decrease the rate of asymptomatic carriage and transmission, we now know that they work on kids as young as 12, and almost no doubt that they will work on younger kids as well as the trials get completed. So we just have to be thankful that these vaccines work so well. And that really since January 20th, we’ve done an exceptional job, distributing the vaccines getting them out there, and we are now reaching numbers of people vaccinated.

Dr. Bob Wachter 

Yes, we’re concerned about the slowing down of the pace. But the numbers that we have reached, are real and meaningful and are providing a significant amount of down pressure on the number of cases, particularly in areas that have high prevalence of vaccination, where I live in San Francisco, we’re getting up to the 60%-70% range of vaccination, and the cases have just melted away. And we’re seeing that all over the country. So while we might not reach herd immunity as an entire nation, and as we’re still seeing what’s going on in India, South America, we’re clearly not going to reach it in the world anytime soon. We are going to see regions in the country that reach a form of herd immunity, where so many people are vaccinated that there is virtually no virus around even as some new cases get introduced through travel.

Dr. Bob Wachter  04:07

We’ve learned how safe being outside is and so the CDC guidance about relaxing masking requirements outside was welcome. I hope they extend that more fully in the next week or so I suspect they will to include kids so that kids can play outside without masks over the summer. In terms of the new guidelines, which really relate to whether you need to do masking and distancing inside. I think it’s welcome to say now that vaccinated people do not need to do that. And hopefully this will encourage more people to get vaccinated. The challenge, of course is obvious, which is we don’t have labels on our forehead that say vaccinated or not vaccinated. There’s no good way to tell who is and who isn’t vaccinated.

Dr. Bob Wachter 

And speaking personally, I still would not go into a crowded indoor space without a mask even though I’m fully vaccinated. If there were going to be a lot of people there whose vaccine status I did not know. And you’ll have to make that decision yourself as you reflect on the CDC guidelines, and you reflect on what happens in your own town or region or state. But for me, my comfort level of going maskless, in a crowded indoor space, will either hinge on whether I am sure that everybody is vaccinated. And that, of course, will raise this issue of so called “vaccine passports”. As I predicted for months, what is sure to be the most controversial issue of 2021 in COVID, I’d encourage you to go back and listen to my conversation with Art Caplan about that.

Dr. Bob Wachter 

So I would certainly feel comfortable doing that if everybody was vaccinated, and I was sure of that. And I would feel comfortable if we got to a place where there was next to no COVID in that particular community. And where I live in San Francisco, we’re getting close to that with a test positivity rate of less than 1%. And about 20 to 25 new cases a day in a city of nearly 900,000, the chances that that person next to me in the bar or in the restaurant, is infected is very, very low. So if you want to keep an eye on things, that’s what I’d be looking at, if you want to ask yourself, am I comfortable being maskless and distanceless inside. First of all, keep an eye on whether you’re confident everybody’s vaccinated in the space. If you are, then that’s absolutely a perfectly safe thing to do.

Dr. Bob Wachter  06:28

If you’re not, keep an eye on the case prevalence rate in your region, and on the test positivity rate. Now, part of the reason I have caution about going inside in a place where people might not have been vaccinated is that although I’m quite confident being vaccinated, I’m not going to get super sick, I’m not going to die of COVID. I still don’t want to get even a mild case of COVID. And in part because we don’t know for 100% certainty that even a mild case of COVID in a vaccinated person can’t lead to the topic of today’s conversation, which is Long COVID. And so it’s an interesting, troubling topic. It’s one of those bad surprises that we’ve seen from COVID.

Dr. Bob Wachter 

I think in the beginning, we thought about this fairly simplistically, you got COVID, some people got pretty sick, but most people recovered. And if you recovered, you were fine. Tragically, many people did not recover and died. But we sort of thought about this in a dichotomous you either die or you get better way. And we now know that there’s this troubling middle ground where you don’t die. But you have persistent symptoms for months, sometimes many months sometimes. we’re now seeing over a year; I think you’ll hear from our conversation that there are fantastic people working on this. Lots of patients and patient advocacy groups are involved. But it’s also fair to say that we don’t fully understand it, we’re not in a position yet where we can accurately prognosticate. We’re not in a position yet where we know what the best therapies are, although we’re getting closer in certain areas.

Dr. Bob Wachter  08:07

And part of the problem is we don’t fully understand what’s going on whether this is from persistent viral infection, whether it’s from persistent overreaction of our own immune systems, whether it’s from inflammation of our blood vessels, or something else, or a combination of all of that. And so, it’s a tough area. There’s a lot going on, a lot of people are suffering from this. And it’s important that we understand it better and continue to focus on caring for these patients the best we can and studying long COVID so we can come up with better ways of prognosticating and better ways of preventing and treating, the most important way of preventing it of course is vaccination. So really interesting topic, really interesting episode and I’m pleased to bring on our two guests discuss it, one is Lekshmi Santhosh.

Dr. Bob Wachter 

Lakshmi is a colleague of mine. She’s a Pulmonary and Critical Care Physician at UCSF. She’s also founder and the physician faculty lead of our multidisciplinary, Long COVID Clinic which is called the Optimal Clinic at UCSF health. The other guest is Jennifer Frontera, who’s a vascular neurology and neurocritical care specialist at NYU Langone health since COVID-19. began her research has focused on neurological complications of COVID, including long COVID, She’s a member of the WHO Brain Health Neurology and COVID-19 forum, which is studying COVID patients with neurological disorders from around the world. So let us bring on Lekshmi Santhosh and Jennifer Frontera.

Dr. Bob Wachter 

Alright, welcome to both of you.

Dr. Lekshmi Santhosh 

Thank you.

Dr. Jennifer Frontera

Thanks.

Dr. Bob Wachter 

Before we get into the details of long COVID I’d love to hear what motivated you to get interested in this topic. So Jennifer, why don’t you start?

Dr. Jennifer Frontera 

Sure. So I’m a neurologist and a neurointensivist. And I’m based in New York. So we were part of the first wave that spread to the United States. And, you know, we really saw quite a volume of patients. And when we had the first wave, we started prospectively collecting data on the patients with neurological complications during hospitalization. And then we subsequently have been following them at six months, and we’re doing our one year follow up right now. So we have data both on patients with neuro complications during hospitalization, but also those who did not. So kind of a broad population of patients with moderate or severe COVID. So, as part of that research, I’ve certainly been involved in people with long term sequelae, after severe or moderate COVID.

Dr. Bob Wachter  10:48

And did you have a sense from the beginning from knowing about other viral illnesses, for example, that there would be sort of some patients with protracted symptoms?

Dr. Jennifer Frontera 

You know, I have done work with Zika, with some colleagues in Rio during the Zika outbreak until we were looking at […], for example. So I have a little bit of post viral neurologic manifestation experience. But this was really quite, quite different. And the spectrum of what we see following COVID is quite different in the entire socio-economic pandemic circumstances are different, which also play a major role in some of what we’re seeing.

Dr. Bob Wachter 

Great. And we’ll get into those things some more. Okay, Lekshmi, what got you interested in this?

Dr. Lekshmi Santhosh

So I’m really interested in breaking down silos between inpatient and outpatient critical care and the ward. And so when our clinical division chief asked, is anyone interested in following these patients afterwards, I just jumped at that opportunity, since I have this interest in looking at the spectrum and the continuity over different clinical contexts, as I attended the ICU on the wards and an outpatient pulmonary clinic. And I also saw quickly with reading the reports, and the research done in New York, China and Italy, that even though the people who are suffering from the long-term sequelae of COVID, are just a small subset of those who were in the intensive care unit.

Dr. Lekshmi Santhosh  12:13

So even though PASC and PICS, post intensive care syndrome have a very small overlap, kind of an integrated multidisciplinary approach is really helpful for both. So I was interested in kind of building a clinical framework that would work well for post COVID, long COVID, as well as beyond for survivors of critical illness in general. And it’s been an amazing learning experience learning from colleagues throughout the country about this.

Dr. Bob Wachter 

So just connect the dots for us, for those that aren’t familiar with critical care. So it sounds like there is a syndrome that your field has been interested in in people who have been in the intensive care unit have been very sick, maybe been on ventilators. And they get off the ventilator and they leave and they are not well, there’s still stuff going on. And that’s something you were interested even before COVID became a thing?

Dr. Lekshmi Santhosh 

That’s exactly right. We know that survivors of critical illness really have issues in forming domains, persistent pulmonary issues, lung function, physical functioning, issues with difficulty and relation getting around mental health, which is critical, and then neurological manifestations. And so the post intensive care syndrome really looks at all of those and asks about all of those systematically. And so we extrapolated that systematic, whole body, mind and body framework to start in our long COVID Clinic. And even though there’s a small overlap between the populations, I really believe strongly that asking systematically about all of those domains is really important, as well as paying attention to the caregiver and family experience, which is another key principle in the post intensive care syndrome or PICS literature.

Dr. Lekshmi Santhosh 

So I acknowledge that again, that’s a small tip of the iceberg of the people who are suffering from long COVID. However, the lessons learned from the decades of Critical Care Research can certainly some of the lessons learned can be applied to our long COVID population. And we also recognize that there are a lot of unique factors of this pandemic, right? We see the persistent neurological symptoms and mental health symptoms and people who are not hospitalized, for example, which I’m sure we’ll get into.

Dr. Bob Wachter  14:14

Yep, yeah. Okay. Debbie asked what is considered long COVID. So is there a definition? Jennifer, you want to start?

Dr. Jennifer Frontera 

Yeah, so I sit on a few of the who panels for […] neurological sequelae, or complications of COVID. And I think this is a work in progress in terms of the exact amount of time most people will quote, greater than or equal to four weeks after the initial infection. And, you know, it’s interesting, the NIH just put out, you know, this request for applications for a series of post-acute sequelae of COVID or PASC grants. And even as part of that application, several people were asking, Well, how do you want us to define post-acute sequelae and they really just turned it back to the investigators saying, you know, we don’t know. So but I think for all intents and purposes, most people would say it’s, you know, at least a month of prolonged symptoms or symptoms after a month following initial index diagnosis.

Dr. Bob Wachter 

Okay. And […], may be for you Lekshmi, who is most susceptible to getting long COVID?

Dr. Lekshmi Santhosh 

I’ll answer that. And to also piggyback on Dr. Frontera, said, The cool thing about the term long COVID is that it is coined by patients, it’s a patient centered, patient coined term. So I think in the research and clinical community, we started calling it post COVID, post-acute sequelae of COVID, PASC, but the patient community worldwide has really rallied along this word of long COVID. And that language is important because it is disability inclusive, it acknowledges that that’s a patient centered or patient-initiated term. It acknowledges that for some people, it’s more of a chronic course. So I’m trying to rack you know, change my language. And the way I talk about it to use long COVID more than the original title of our clinic was called the post COVID Clinic.

Dr. Lekshmi Santhosh  16:09

And now we’re, you know, changing it to more the long COVID Clinic acknowledging this fact. So, you know, Dr. […] is the one who coined that term. And since then, it’s been well studied and a lot to learn who gets it, what are the risk factors? So there’s a lot of emerging research in this area. And again, as Dr. Frontera said, the studies are difficult because some people will say, this is a study for 30-day outcomes, four-month outcomes, six months outcome, six-week outcomes. And so all of these studies are so heterogeneous, as well as the samples that we looked at, is this a prospective? You know, follow up study, longitudinally, of all the VA is like that nature medicine paper that came out? Is this study of all of the NHS hospitals looking retrospectively?

Dr. Lekshmi Santhosh 

Or is this a study initiated by patient support groups like survivor core and body politic? And so you have to think about kind of the inclusion exclusion criteria and confounders and bias in any study that you interpret. So, which is what the definition is so hard, the prevalence is so hard to estimate. So that being said, what are the risk factors that we know of, it seems that in contrast to who gets hospitalized and who dies, who gets hospitalized, and who dies, predominantly older male, and people of color, particularly are black and Latinx patients in America.

Dr. Lekshmi Santhosh 

And who has these longer lasting symptoms. In contrast, in many studies, it’s been shown, typically younger folks, more often female sex, more often, white people. And some studies have maybe a link to higher socioeconomic status. And so again, we don’t know if that’s an under representation of those populations, or an over representation of those populations. So I think this NIH study is going to really put money into things like defining the prevalence in a better way, looking at the risk factors and looking at the biological basis.

Dr. Bob Wachter 

Jennifer, I think you can to add to that.

Dr. Jennifer Frontera 

Yeah. So we have a study sort of similar results for the patients with protracted COVID symptoms. We’ve basically surveyed about 1000 people in the US population, that sort of mirror the demographics of the US, that’s how the survey is constructed. And some people have COVID, some didn’t, 8% responded as having had COVID. And that sort of matched the Hopkins data for the time that the study was conducted. Out of those patients, 25% of the patients that have COVID reported having symptoms that lasted more than a month. So that was a substantial subgroup. Amongst them, we did look at, we looked at socio economic stressors like social isolation, financial insecurity, food insecurity, domestic violence, etc.

Dr. Jennifer Frontera 

And they were strong, those factors were strongly correlated with the number of symptoms patients had also with self-reported, what are called promise or neuro qual metrics. They’re kind of ways of gauging levels of anxiety, depression, we looked at sleep fatigue, and then subjective cognitive dysfunction also, and we did find, like other papers that patients who are younger, more often female, and Hispanic. And patients that had more histories of depression, anxiety and higher levels of stressors, were at higher risk of having persistent symptoms after having COVID.

Dr. Bob Wachter 

So Lekshmi, when we talk, you mentioned that these are often not people that had critical illness was were not on a respirator on death’s door, they may have had a mild case, do you ever see people that had no symptoms at all?

Dr. Lekshmi Santhosh 

It’s a really good question. So part of that is how you get your patient population and what is your kind of inclusion criteria where your clinic recruits from. Our clinic sees a variety of people those were hospitalized as well as people who are not hospitalized. It is some studies have reported that people can have long COVID with symptoms after asymptomatic infection, but that is a smaller percentage. So I’m not saying it doesn’t happen, it definitely happens. It is a smaller percentage, I think the biggest percentage, the biggest contributor is people who were sick with, quote, mild illness by WHO guidelines upfront. And then having persistent symptoms afterwards.

Dr. Lekshmi Santhosh  20:18

Again, that’s a really different population, then the post critical care population, or even the post hospitalized population, and then the asymptomatic population, some studies show, you know, ranging from depends on the study, 2% to 20% of the people with persistent symptoms may have asymptomatic infection. And so those are vast numbers, prevalence estimates that I’m citing, which again, shows the need for more research on this.

Dr. Bob Wachter 

And when you point out the different groups of people are, if someone’s initial presentation is, let’s say, chest pain and shortness of breath, are they very likely to have those symptoms persist? Or do people cross over their initial presentation was GI, for example. And then their long COVID symptoms? Or neuro or psychiatric? Maybe Jennifer?

Dr. Jennifer Frontera 

Yeah, that’s a that’s a great question. And I think, you know, at least what we’re seeing, in some of our preliminary data, it seems to be kind of a persistence of symptoms. Again, that is something that we’re still unraveling. And as we do longitudinal follow up on the same population. So you’d have to interview them multiple times serially, will get a better sense of how the symptoms changed, but also how more quantitative measures of their outcomes change, which I think is really important to collect as well. So if we use standardized measures of anxiety, fatigue, depression, etc, sleep, I think that’s meaningful, because your level of anxiety and my level of anxiety we may describe very differently, even though they may quantitatively be the same.

Dr. Jennifer Frontera 

So understanding that over time, I think, is not to discount, you know, people’s subjective symptomatology. But I think having objective measures that this will really give us some input and better understanding of what’s going on and how people recover over time, we’re doing one year follow up right now on our first wave of patients. And, you know, we’re repeating the same metrics we did at six months. So hopefully, we’ll see something in a positive direction. And that might be encouraging for some folks who have been infected more recently that. But we’ll see, we’re still working through the data.

Dr. Bob Wachter  22:29

Even take us through the six months, because it’s so if you see a patient who is a month into it, or six weeks into it, and still feels pretty crummy for many of these symptoms, what do you tell them about what they’re likely to feel like, let’s say five months from now?

Dr. Jennifer Frontera 

Yeah. So I mean, you know, we can develop models where we can look at predictors of how people are going to do, which we have done for six months, the people that wind up having more disabilities are the same people at risk for more severe COVID. So older people, males, people with high blood pressure, diabetes, other comorbidities like that. People with underlying depression or anxiety, or other types of psychiatric illnesses. And then, of course, patients with dementia, at baseline prior to having COVID tend to be more disabled at six months than people that don’t have those issues. And lastly, you know, what our primary hypothesis was, was to look at people that had neurological events during hospitalization.

Dr. Jennifer Frontera 

And that certainly does impact. Many of those metrics, including your ability to engage in your normal activity, is your ability to go back to work if you’re working pretty morbidly your ability to walk or do activities, even around your own house. You know, and I will say that most of the neurological issues that we were looking at in the hospital were what we call encephalopathy, or confusion. And so things that not may not seem it so severe to some people actually did really have sequelae that were important.

Dr. Bob Wachter  24:05

Yeah, I guess I’m still not clear. And maybe the answer is we’re not clear if I’m a 30-year-old woman who comes to see you a month out. And I just my brain just doesn’t feel right. It’s foggy. I’m not thinking as clearly as I was, I have no special risk factors for a bad outcome. Are you going to tell me that it’s likely or the not several months from now that I’ll feel fine, or we can’t say that at this point?

Dr. Jennifer Frontera

Oh, this this is a very good question. And this is kind of what Lekshmi was referring to in a way. So at six months, I’m talking about follow up from people that were hospitalized, that had objective tests of their cognitive function, like I had to administer an exam to you. And so that’s quite different than a subjective cognitive test where you’re asked to fill out a questionnaire basically about a bunch of your normal activities, do you find it more difficult than normal to concentrate, to fill out a form to etc, etc. So subjectively, on these types of quantitative measures, and also based on reported symptoms, it’s interesting that the people that are at risk for subjectively feeling bad or subjectively feeling like they had brain fog, are different than the people that have objective quantitative abnormalities after being hospitalized for COVID.

Dr. Jennifer Frontera 

Completely different groups. So the people that do poorly after hospitalization, or older men, multiple comorbidities, the people that subjectively have more symptoms of perhaps brain fog, headache, etc, and do worse on tests that measure how your subjective level of cognitive problems are younger women, Hispanics, really not that many comorbidities. So very different groups. And I think we have to work to figure out what the underlying reason for that is. And some of it is probably related to different stressors that these different groups are experiencing. But I think we have to really kind of parse them apart and study them separately in some ways, because probably the interventions to help these people with what they’re dealing with are going to be different.

Dr. Lekshmi Santhosh  26:30

I’ll piggyback on that for two main points. One is that, as Dr. Frontera says, The symptoms that people experience not necessarily correlate with are validated measures of organ dysfunction. So what I mean by that is, some people can feel really, really short of breath. But they’re breathing tests, their pulmonary function tests can be normal, surprisingly, they could feel chest pain, but their echo and ultrasound of the heart could be normal, they could feel brain fog, but an MRI of their brain could be normal. And one of the things that’s tricky and very humbling about this disease, is that the opposite can be true, we can have people with really bad PFT’s, lung function tests, and they’re walking around saying actually feel okay.

Dr. Lekshmi Santhosh 

And so what I always say is, I believe the patients believe their symptoms, this is not all in your head, I do a lot of talking to people and validating that, that this is, you know, experienced by millions of people worldwide. This is not your head, I believe your symptoms, even if the organ dysfunction test that we currently have, are not showing up anything. And then the other thing that I tell people is what is that long term trajectory? What is the outlook Am I going to feel like this forever. And what I tell people is that from the data that we have, so far, most people in these studies are improving slowly over time.

Dr. Lekshmi Santhosh

However, symptoms that improve, that are more common to improve are that chest pain and shortness of breath, those type of symptoms, the neurocognitive symptoms, and the fatigue in many studies are often later to improve. So it’s really tricky to predict. What I tell people is we don’t know exactly for sure; we don’t have a crystal ball. In most patients that I’ve seen that the research shows they are improving, which gives us hope. These are what we can work on now to manage your symptoms now, and that most people are improving over time. But the fatigue particularly can be quite intractable in many patients. And so ongoing research and studies are needed.

Dr. Bob Wachter  28:43

Let’s talk about treatment for a second. When we start with the question of whether vaccines are useful. Is there any evidence about that? I know there’s sort of anecdotal when the study when we first heard about it. And then, are there any treatments that have been proven to be useful? It sounds like it would be kind of a mix of things because the symptoms are so varied.

Dr. Lekshmi Santhosh 

So there’s been kind of one small study that’s come out. And it really was a very small study less than 100 people looking at essentially the safety of vaccines in patients with long COVID. And it found that some people did better, a minority felt worse. And then some people stayed the same. And the main researcher who’s now investigating this is Dr. Akiko Iwasaki at Yale, who is doing research on exactly those hypotheses that we talked about, is it auto immunity or auto antibodies? Is it a persistent virus reservoir in your body? Or is it inflammation related to it? So as of now, what I tell people is that if you had COVID, please still get the vaccine.

Dr. Lekshmi Santhosh 

Our UCSF infection control guidelines say to wait 90 days or three months after your first infection. And that’s both to kind of avoid excessive side effects as well as that early immunity in the first three months is quite strong for your natural infection. But I say if you’ve had COVID, before, please still get the vaccine because that’s going to be a more durable long-lasting immunity than the natural immunity. And some preliminary data show that it may help you. It certainly in the small study that exists, doesn’t hurt. And Dr. Iwasaki at Yale is currently studying this.

Dr. Jennifer Frontera  30:19

I will also add that there was a New England Journal small article, really suggesting that people who have had COVID and then get vaccinated generate an even better immune response than people who have just been vaccinated. So it’s a win win across the board, you might even get better. So certainly, we would support vaccination for people with COVID, long COVID or without COVID at all.

Dr. Bob Wachter 

Okay, so Jennifer, take us through other potential treatment modalities of if I had long COVID, I’d come in and I would wonder about getting an antiviral drug, I would wonder about getting something that’s going to modulate my immune system, if that may be part of what’s going on. So how do you talk through those issues with patients?

Dr. Jennifer Frontera 

Yeah, so I think it’s immune modulators certainly have a risk to them, and really, at this point, no clear benefit, and in the post-acute setting, very different than in the acute setting. So I think at the moment, we’re dealing with a lot of kind of supportive therapies, which might be physical therapy, keeping in mind, the lessons that we’ve learned from chronic fatigue syndrome, that you have to be very measured in terms of activity, that excessive activity will really exacerbate people that have chronic fatigue syndrome, for example. And so we want to try to keep that in mind when we’re gauging people’s responses to physical therapy.

Dr. Jennifer Frontera 

There’s also cognitive therapy, for example, as well as some, I think data coming out on neuropsychiatric types of management of depression and so forth. And for fatigue, people are looking at what we often use, which would be melatonin at night, and then potentially neuro stimulant in the morning, which could be methylphenidate, it could be amantadine, there’s a variety of different things that have been studied for arousal. I think those are the options at this moment. None of them have very robust data. But I think at least it’s one way to approach dealing with people’s debilitating symptoms.

Dr. Bob Wachter  32:25

Lekshmi, anything that else that you are using, or you’re particularly excited about seeing clinical trials in for these patients?

Dr. Lekshmi Santhosh 

I really want to emphasize the do not prescribe list. I worry that in this area of great therapeutic uncertainty, there’s a lot of snake oil sales men and women who have come out of the woodwork, marketing ineffective, unproven, and sometimes frankly, dangerous therapies to our patients and preying on their fears. I’ve had patients be approached about IV therapies, IV vitamins IV ozone, things like that. iv remdesivir, Tamiflu antiviral. So none of these work steroids for long COVID symptoms is something that I would definitely not recommend.

Dr. Lekshmi Santhosh 

I’ve seen a lot of patients who’ve been on prolonged courses of corticosteroids, prednisone and have a lot of complications from that. There have been studies of anti-inflammatory medications like interferon, antivirals, all of that has not panned out. And so what I tell people is, I’m interested in treating your symptoms now and helping you feel better now. And because there is no one long COVID there is no one long COVID treatment plan. So if you’re predominantly in that, you know, dysautonomia, postural tachycardia, pots type person.

Dr. Bob Wachter 

Let translate those things back into English.

Dr. Lekshmi Santhosh 

Yep. So dysautonomia, pots, what does that mean? Some people with long COVID symptoms, when they stand up, suddenly, they basically feel really, really heart racing short of breath. And that’s because some people with long COVID have this response where the nervous system is basically kind of turned on inappropriately or inappropriately fast and that your heart races way faster. So that can be connected to with chronic fatigue symptoms. In some cases. In fact, it’s one of the criteria for chronic fatigue syndrome is to have that so some people are having a lot of issues with that with difficulty with fast heart rate shortness of breath when standing up or when walking.

Dr. Lekshmi Santhosh  34:24

We do a lot of things to coach them to break that cycle, talking about fluid intake, salt intake, compression stockings, and in rare cases or medications for that, for the fatigue. As Dr. Frontera mentioned, there are trials ongoing of neuro stimulants, improving sleep. There’s some trials ongoing of low dose naltrexone for chronic fatigue type symptoms. I think all the behavioral interventions are really important. I always talk to my patients about treating everything that you’re experiencing and treating mental health as a huge pillar of that. So I emphasize that there is a strong mind and body connection, especially with my specialty, pulmonary shortness of breath.

Dr. Lekshmi Santhosh 

You can get into a vicious cycle with shortness of breath and anxiety and they can drive each other. And so treating that we talked about breathing exercises, there’s a great website for kind of free breathing exercises, almost like a mini pulmonary rehab, which is a guided exercise program for people’s lungs that I recommend for people. pulmonary rehab is something that is covered by many insurance companies, for people who are having issues with long COVID. And so I asked people to ask their doctors about that or look at if I could prescribe it for that. And then physical therapy, cognitive therapy, if appropriate, and a lot of linkage to supportive resources.

Dr. Lekshmi Santhosh 

So the other thing that I would emphasize, Bob, is that not all that long hauls is COVID. And what I mean by that is, I have folks coming to me nine months after diagnosis a year after diagnosis six months after diagnosis and saying, I have this new rash, I have these new headaches, this I didn’t have before and either they themselves or their doctors or their clinicians have labeled them as Oh, it’s just your lawn COVID. And in our clinic, we have diagnosed sadly, metastatic cancer, hypothyroidism, hypersensitivity pneumonitis, which is basically an allergic reaction in the lung to something in the environment, postpartum depression, etc.

Dr. Lekshmi Santhosh  36:19

And so I always say, put those thinking caps on think broad, don’t anchor on one differential diagnosis, don’t anchor on the, on the diagnosis of long COVID. But think broadly. And so I tell people, if there’s new symptoms popping up, don’t just attribute it to long COVID, especially in this era of deferred care, where people have put off their doctor’s visits, put off those colonoscopies and mammograms, I just asked people to take these new symptoms really seriously.

Dr. Bob Wachter 

That’s a really good point. Kim Sena asked, my 19-year-old had COVID at the beginning of January flu like symptoms for 48 hours and then lost his taste and smell, and they’ve not yet returned. Is there anything I can do to speed up the recovery there? And also, what is the prognosis of that particular symptom? Which is, can be debilitating? Jennifer, what have you seen with that?

Dr. Jennifer Frontera

So, there is an olfactory rehab type of thing you can or therapy type of things that you can do. And the good news is that most people that have loss of sense of taste and smell, it usually does recover over a few weeks. And I think neuro pathologically, though the literature is very mixed, I think most of it shows that SARS, Coby to the virus that causes covid is, is affecting, basically the lining of your nose, where the sensory neurons are for smell, rather than the neurons themselves. And in that case, they should recover. Sometimes it takes longer for some folks and others. And so, but I think the cases where people are reporting, like months to a year of loss of sense of taste, and smell, are rare. So most people will recover over a period of weeks or possibly less.

Dr. Lekshmi Santhosh  38:06

And how that actually works, there’s a great New York times article on it, actually. And when I tell people anecdotally in our clinic is, you know, you can train your brain where for a week, try to smell something really strong, that’s citrus and so you’re kind of saying citrus, and you’re focusing on citrus this week, and then the next week picking a different scent, you know, mint, something really strong. And so there’s some great both popular press as well as EMT, ear, nose and throat literature on that olfactory rehab or smell retraining

Dr. Bob Wachter 

Nasal rehab, who would have thought? Brian Spaulding asked, have any of the variants been shown to produce greater incidence of long COVID?

Dr. Jennifer Frontera 

That’s a good question. I will say that I think we have not done as much genotyping in this country as we would like to. Okay, so it’s still like a special kind of laboratory test. It’s not a routine thing. And so, because of that, and because long COVID is still remaining as a not as well-defined entity as we would like. I think that there’s, at this point, not great evidence that any given variant is more likely to produce long COVID. Some variants are associated with more severe forms of acute COVID. That is known. But the prolonged symptoms, or the post-acute COVID is less clearly tied to any one genotype. Unless I don’t know if Lakshmi wants to add anything to that.

Dr. Lekshmi Santhosh 

I would agree, I would just say we don’t know yet. And either way, the variants are something that, you know, as Bob likes to say, it’s kind of a race right now, the vaccines versus the variants, and so only time will tell and further research to be done.

Dr. Jennifer Frontera

I just, if I could just piggyback on something that lush made mentioned earlier regarding the idea of really addressing mental health issues. Unfortunately, in our society, it’s a taboo really to talk about mental health, and yet you know, at least on one of our surveys, we’ve looked like 30 to 40% of Americans, even without COVID are dealing with depression and anxiety right now. It’s a very stressful time. And I think that acknowledging and dealing with that is absolutely elemental for whole body health, as well as any symptom you might be dealing with from long COVID. So, I think that, you know, putting that out there in the open and saying it’s okay to really deal with mental health symptoms is absolutely essential for getting to the bottom of some of what people are dealing with long COVID.

Dr. Bob Wachter  40:36

Yeah, it strikes me that you must have a delicate balancing act to go through with many of these patients. As Lakshmi said, it was very important to tell them it’s not in your head. And yet very clearly, there are elements of it that either link to pre-existing anxiety or depression or bring out anxiety or depression. How do you articulate that in a way that doesn’t feel like you’re telling me one thing, and then you’re treating me completely, diametrically opposed way.

Dr. Jennifer Frontera

Well, I mean, I like to say, first of all, anxiety and depression are neurochemical imbalances, okay. Sometimes when people use the term in your head, it implies I don’t believe you, there’s nothing wrong with you, that is not at all what we’re saying these people’s symptoms are real, and they’re debilitating and need to be dealt with, and addressed. And that is for sure. But, you know, I tell people like depression and anxiety have really strong foundations in neurotransmitter abnormalities. neurotransmitters are the way that your neurons talk to one another. That is a physical problem that we can fix. Thankfully, with a variety of different medical options, I view it as another type of physical problem that people have that we can address. And I really do hope that the stigma surrounding mental health care that some of those barriers can really start to fall down, I just think it’s largely untreated.

Dr. Lekshmi Santhosh  42:04

I totally agree and to address that. That’s why when you come to our clinic, and many of these clinics around the country, your first visit is with a pulmonologist and either a psychiatrist or a mental health specialist, psychiatrist, psychologist, or a psych social worker. And so we, when we’re making our appointment, give the patient upfront those two appointments and normalize that before our appointment, we give them mental health screening questionnaires, and respiratory symptom screening questionnaires, normalizing that mental health is health, this is absolutely part of our integrated, multidisciplinary holistic approach. And it is so important to treat everything we can with multiple modalities.

Dr. Lekshmi Santhosh 

So you’re totally right, Bob, that I always acknowledged to people that there’s so much that we don’t know, we’re still studying. And in the meantime, let’s treat everything that’s going on, effectively, every way we can. And we know that, you know, anxiety makes dyspnea shortness of breath worse. So let’s treat both of those. Let’s treat the anxiety with you know, therapy and anti-anxiety meds, and let’s treat with shortness of breath with pulmonary rehab, breathing exercises, measuring your lung function texts, and excluding anything else that might be going on. So I think when people come, they have the sense of oh, she and they are really looking at trying to understand what’s going on with me and not just putting me in a mental health box.

Dr. Lekshmi Santhosh

Because I think that’s what people don’t like to be labeled as that. Okay, this is just anxiety. And I think telling people that this is a whole-body approach, we’re going to treat everything we can with multiple modalities is helpful. And also keeping that differential diagnosis antenna broad to say, I’m also really interested in to figure out, is there something that I’ve missed? Is there something that we’ve missed? Are we anchoring on this diagnosis of Long COVID. So I think that helps people feel heard and understood and that approach is helpful.

Dr. Bob Wachter  44:13

And by looping back to where we started, I asked you what got you interested in this and you’re both intensivists. By training, you take care of really sick people in the intensive care unit, you have a ton of data at your disposal. Although there’s a fair number of situations with uncertainty, you know, we understand the illnesses quite well, we often have a pretty good database on which to prognosticate. And you’ve both chosen to get involved in a set of diseases or, you know, clusters of symptoms that we understand very little about, I’m sure many patients are frustrated and scared and don’t know if this is going to go on for three months or three years or forever. We don’t really know how to treat a lot of it. So what keeps you going and what do you find gratifying about this work today?

Dr. Lekshmi Santhosh 

I think this work is incredibly personally gratifying to me. Just as when at whether I’m in the ICU, in the hospital or in clinic, I get great satisfaction out of being people and helping them through the worst days of their life, the worst months of their life. That’s why I went to medicine, and it’s a pulmonary critical care and hospital medicine. And in our clinic, seeing people with that continuity, if someone who I took care of who is on death’s door, seeing them walking into clinic and talking to them, it’s very often that there’s tears on both sides. And so it’s very rewarding. I think that the uncertainty pushes me to keep up with the literature to learn from colleagues to help colleagues across the country set up their own clinics to help people. So it has been a very personally rewarding journey to see how I can help in any way I can. And the sessions are honestly inspirational.

Dr. Jennifer Frontera 

Well, I think, you know, we’re dealing with a once in a lifetime situation right now, where things are moving incredibly quickly, and millions of people are affected. If we were to extrapolate the number of Americans, for example, living with long COVID, from loose our preliminary small data from, you know, 1000 people, that would translate to about 6.25 million people right now living with protracted symptoms of COVID. This is a huge problem. And you know, certainly for the people that are dealing with this personally, it’s a huge problem. But then also for us, as a society, it’s a huge problem, if we have folks that are not able to go back to work, engage in the normal activities. So there’s a lot of repercussions to this. I don’t think there’s ever been a more pressing issue, at least in my lifetime, that we’ve confronted medically, with as much urgency as dealing with the fallout from this virus. So I mean, I feel compelled because of the sheer magnitude of the effect, the fact that we know so little, and so many people are affected so severely, that I just think there’s a lot of work to do. And that really drives me to move faster and harder, I think, to get answers to help a lot of people who are suffering.

Dr. Bob Wachter 

Yeah, I promise that was the last question. But I guess I just thought of one more, I feel like I will not be doing my public service duty if we don’t take an opportunity to do a vaccine PSA. So some people say I don’t want to get vaccinated, I’m young, I’m healthy. And if I get COVID, I’m gonna get a mild case. And I’m guessing you’ve seen patients with Long COVID that would make you give those folks a little bit of a speech about why vaccination might be a good idea to either one of you want to take that opportunity to do that?

Dr. Jennifer Frontera 

Yeah, we both do, I’m sure.

Dr. Lekshmi Santhosh 

Exactly any talk that I give about Long COVID. That’s exactly what I say I said, this is not black and white. This is not life and death. That’s the statistics you read in the newspaper, this many people died, this many people recovered. But recovery for some people means months of being unable to return to the work, to do laundry to do dishes. Our patient stories are heartbreaking. I see a lot of healthcare workers in my clinic, physicians, nurses, other health care workers. And it is heartbreaking hearing these stories. And so any opportunity to prevent the cycle, this cluster of symptoms that could be affecting people months out with a preventable illness, that’s just a shot in the arm, please, please take it, don’t hesitate.

Dr. Lekshmi Santhosh  48:36

And I think from a societal level, the more of us that get the vaccine, the closer we can return to normal. I want to go to a concert like I see my colleagues who are intensivists in Australia and New Zealand doing. I want to go to a concert without a mask. I want to do a lot of indoor dining. I’m a foodie without a mask, and the closer that all of us get to, you know, better vaccines for all the more people get vaccinated, the closer we’ll all get to normal. And, you know, I tell people, I don’t want to see you in my clinic, please. This is preventable.

Dr. Bob Wachter 

Yeah. Jennifer, anything to add there?

Dr. Jennifer Frontera 

Yeah, I would say that, you know, the concerns about side effects from a vaccination are, you know, really less than one in a million in terms of seriousness. And I will just remind people that when we had the first surge in New York, our mortality rates for people hospitalized was 25% to 30%. That’s unbelievable. And so would you rather take a one in a million chance that you have a potentially treatable side effect or would you do risk actual death by getting COVID and now adays that a lot of our older folks are vaccinated, we’re seeing younger people coming into the hospital with acute and severe COVID.

Dr. Jennifer Frontera 

So no one really is immune from this virus, in the metaphorical sense, you can be immune in the technical sense if you get vaccinated, but everyone is really at risk. And so I think that really has to be taken seriously. And I agree with Lekshmi, we’d all like to go back to life as normal. we’d all like to not have our ICU’s filled with people that are so so sick. And you know, certainly these folks that are suffering for months with protracted symptoms that keep them from even doing their favorite activities, that that should be enough to sort of motivate folks to go out and get vaccinated and avoid all of this, so easily avoidable.

Dr. Bob Wachter  50:36

Yeah, boy, you would hope so I think at this point, we know that every person that we see like this, it probably was preventable. So it will almost will add to the tragedy. And I think the point, you both made that it’s not just simply a black and white, you die or you get better, you’re seeing a lot of people who are not better and, and we hope we’ll find better treatments for them. But for now, knowing that for a lot of them that this could have been prevented is really, really adds to the tragedy. Thank you both for the work you’re doing in this area. It’s really important, and I know really hard, but it sounds like quite gratifying, and it is quite meaningful. So thanks for coming on today to describe it for us.

Dr. Jennifer Frontera 

Thanks for having me.

Dr. Lekshmi Santhosh 

Thank you, Bob.

Dr. Bob Wachter 

Well, a special thanks to Lakshmi and Jennifer for taking care of these really complicated patients and helping us expand the frontier of what we understand about them. And for that discussion, let me emphasize again, the last point I made with them, at least in the United States. Now, everybody over age 12 has access to vaccination, meaning every new case that we see, of COVID. And eventually, every case of long COVID that we see from an infection that happens now, we really can say to ourselves that was preventable could have been prevented, had someone gotten vaccinated. So if you’re not vaccinated, now is the time to do it. If you have friends and family who are not vaccinated, please continue to talk with them, encourage them to do it. Even if they say I’m at low risk of getting super sick and dying.

Dr. Bob Wachter  52:24

That does not mean as you heard that they’re at low risk or, or minimal risk of getting loan long. COVID. And as I hope the conversation impressed upon you, you don’t want to get that even if you ultimately survive your bout of COVID. So I’ll be doing one more episode with you this one on COVID and the restaurant industry which has gotten battered in the past year and is now coming back to life. I’ll be talking to celebrity chef and restaurateur Justin Sutherland. After that, we’ll take a brief break to prepare for Andy Slavitt’s return to the show, which I look forward to. In the meantime, we’ll replay a few of our best episodes over the last several months. And so you won’t need to go completely […] during a few week hiatus before Andy’s returned. So until I returned with you with Justin Sutherland, please stay safe, please get vaccinated. And I look forward to talking to you soon.

CREDITS

We’re a production of Lemonada Media. Kryssy Pease and Alex McOwen produced our show. Our mix is by Ivan Kuraev. Jessica Cordova Kramer and Stephanie Wittels Wachs executive produced the show. Our theme was composed by Dan Molad and Oliver Hill and additional music by Ivan Kuraev. You can find out more about our show on social media at @InTheBubblePod. Until next time, stay safe and stay sane. Thanks so much for listening

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