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Brian Lehrer: Brian Lehrer WNYC, we turn now to long-haul COVID. With the Delta variance spreading out there, can vaccinated people who get mild initial cases be in for a rougher ride long-term? What about the unvaccinated people? Few recent studies on the long-term symptoms of COVID-19 are shedding light on just how much we still don't know about the ongoing effects. Researchers are still looking into the dozens of possible symptoms that people who have survived COVID are experiencing, but the impact on their lives are more clear.

One big study published in The Lancet's EClinicalMedicine Journal last week, found that out of 3,700 survey participants with long-haul symptoms, 45% had to reduce their work hours as a result of their symptoms and another 22% were completely unable to work. Joining me now to discuss the latest in long-haul COVID news is Dr. Marjan Islam, Director of the COVID-19 Recovery and Engagement or CORE clinic, and Assistant Professor of Medicine in the Division of Pulmonary Medicine at the Albert Einstein College of Medicine and the Montefiore Medical Center. Dr. Islam thanks for doing this with us. Welcome to WNYC.

Dr. Marjan Islam: Hi, Brian, so happy to be here. Thank you.

Brian Lehrer: Is there a working definition first of long-haul COVID for you as a doctor or as a researcher?

Dr. Marjan Islam: Yes. The term long-haul COVID or long COVID rather is a very patient-oriented definition. It's something that came upon naturally from the community of patients that were experiencing these symptoms. It's different from a research definition, where we've been describing it as something called post-acute sequelae of COVID which-- We're using it in the research community to define a number of symptoms and conditions when we're trying to study this in a systematic way, but really long COVID is this protracted symptom that umbrellas symptoms that persist for typically four weeks or more. It can affect a wide range of symptoms involving physical or mental health consequences.

Brian Lehrer: Is it possible to say what percentage of COVID survivors go on to suffer, what medicine is coming to call long-haul?

Dr. Marjan Islam: It's very hard to say. A lot of the studies are plagued with something called sample bias or recall bias, where typically through surveys patients that have symptoms tend to participate in these surveys. The CDC recently noted in a large group that maybe about 23% of patients that had COVID-19 go on to experience long COVID, but really the epidemiology of it, it's still being worked out.

Brian Lehrer: As I mentioned in the intro last Thursday in a study published in The Lancet's EClinicalMedicine, a team led by University College of London Scientists looked at survey responses from over 3,700 COVID survivors from 56 countries. The authors of the study claim it's the largest study of long-haulers to date, and they found that 91% of participants reported having COVID-19 symptoms for more than 35 weeks. I'm curious what the range is that you've seen among your patients at the CORE clinic. Is there an average or does it depend a lot on different factors?

Dr. Marjan Islam: Yes. That is such astounding number right? 35 weeks, 91% still persisting with symptoms. One of the challenges here is defining what patient population we're talking about. A lot of patients who've been hospitalized have severe illnesses from COVID. We see objective impairments and lung function. When we look at breathing tests, X-rays, heart ultrasound, we can see objective measures that can explain their symptoms.

There's a separate group here of patients, who are typically younger, typically women, typically-- Who had milder symptoms that have this other constellation symptoms of fatigue, shortness of breath, headaches, some of the long-COVID symptoms that you described. Really it varies so much that it's hard to say. One thing that's important to delineate here, is I think we're talking about two groups of patients here. One who have objective impairments that us physicians are able to define through functional studies that we do, that are due to organ injury that we see in patients with COVID.

Then this other group that-- We look at their X-rays, we look at their breathing tests, their heart ultrasound. Everything comes back pretty normal, but the patients are still complaining of these debilitating symptoms. It's also important to understand that the way that we've been defining this illnesses, whether it's severe or not severe COVID, that's really been revolving around the degree of pneumonia that these patients have.

We say that it's severe COVID if these patients have had severe pneumonia, resulting in them needing oxygen support or steroids. Certainly a lot of these long-COVID symptoms are severe, but they're just not life-threatening. The shift in understanding how to label COVID is shifting as a pandemic has evolved from such a surge in calamity that it was back in spring of 2020, and then the winter of 2020, then now we're looking at pretty severe debilitating symptoms but not life-threatening or requiring hospitalization.

Brian Lehrer: Listeners help us report this story with your own long-haul experience or-- And get your questions about long-haul COVID answered for yourself or anyone else, 646-435-7280 for Dr. Marjan Islam from Albert Einstein College of Medicine and Montefiore Medical Center. 646-435-7280 for your long-haul experiences or questions. 646-435-7280 or tweet your question or story @BrianLehrer.

Staying on that same study for a minute, and then I want to get into vaccines and whether they diminish the chances of long-haul if it's easy enough to tell that yet. That same study also found that long haul symptoms impacted 10 different organ systems, including of course pulmonary and respiratory but also what they call neuropsychiatric, dermatologic which I guess is skin, and even reproductive systems. How do you as a researcher and a clinician begin to understand how COVID long-haul is impacting the rest of the body?

Dr. Marjan Islam: Like I mentioned, when patients have a severe illness, it becomes in a way easier because we can see that they've had injury to the lung, injury to the heart, even injury to the nervous system. It's this group that doesn't have these objective measurements that are complaining of symptoms, that really is the black box and the mystery of long COVID. The more that we're learning about this, the more it seems likely or certainly similar to a condition that is known as opposed to viral syndrome. That's something called myalgic encephalomyelitis or chronic fatigue syndrome.

I think this condition was brought to the forefront when Dr. Fauci mentioned it in a Medscape interview back in 2012. This is a condition that is still fairly unknown by the general medical community, but we're learning more and more about it over the last few years. It seems to be a condition that stems from the body staying in this persistent sickness state, when we're sick. We've all been there where we feel unwell for a few days, we kind of feel crummy we don't do a lot of things that consume a lot of energy. That's an adaptive response that our bodies have to focus on healing and fighting off the infection, so that we can get better.

When patients complain of this long-COVID syndrome, it's almost as if this adaptive behavior is never switched off and we stay in this persistent state. This seems to be a blueprint for a syndrome that these patients are experiencing, and it does overlap significantly with a lot of the complaints of fatigue, brain fog, having something called post-exertional malaise, where after you exert yourself you have this crashing feeling where you really lose energy. There's still a lot to learn about it, but this diagnosis seems to be a framework that fits well with long COVID.

Brian Lehrer: Interesting. It's interesting that you bring up myalgic encephalomyelitis also known as chronic fatigue syndrome. I know that people with that, hate the term chronic fatigue syndrome now. They think it's come to be Kind of slur, and that people don't take them seriously, and they think it's all in their heads and things like that. Are there specific lessons from so much long-haul research, because I think another complaint that people with myalgic encephalomyelitis have is that there isn't that much research on it because even the medical establishment doesn't take it seriously? Obviously, people are taking COVID very seriously, so is there a side benefit to understanding chronic fatigue from the research that's being done now on long COVID?

Dr. Marjan Islam: Absolutely. You hit the nail with the hammer there. This chronic fatigue syndrome thus far has been this post-viral condition that's difficult to characterize. There's no blood test to diagnose it, but there's a constellation of symptoms that are present consistently. With this pandemic, there's such a large influx of patients who are having this post-viral syndrome that-- Just like the term long COVID came from the community, this constellation of symptoms are coming from the community and forcing the healthcare system and physicians to really take a look at it.

Like I mentioned earlier, a lot of these patients we do tests on and it all comes back normal. What we're learning here is just because the testing is normal doesn't mean that nothing's wrong. It just means that we haven't found out what's causing the symptoms. That really is the lesson that COVID and the long-haul population is really forcing the medical community to embrace.

It really does generate from the patient population that they're the ones that are-- One, they coined the term long COVID, and now they're driving the research community and physician community to focus on what symptoms they're having, and trying to understand what explanation exists for why they're experiencing these symptoms. There was a study-- Sorry, go ahead.

Brian Lehrer: No, you go ahead. Finish that thought.

Dr. Marjan Islam: There was a recent paper that came out pre-COVID. This was back in 2019, and it gave a great update on understanding the pathophysiology of chronic fatigue syndrome. When we say that a lot of these patients, there's nothing wrong, well, really what we mean in that is the tests that are routinely done in clinics show that there's nothing that we're able to detect as are normal. But certainly in these highly-specialized centers that do research in this condition, there are a lot of things that they're picking up, that's different.

The amount of energy that's being produced by the cells of patients with chronic fatigue syndrome, MRI scans of their brain show abnormalities, there's something [unintelligible 00:13:00], which is an exercise test that we look and do on patients that have symptoms of fatigue and shortness of breath that we can't explain. We find that these tests are also abnormal in patients who have CFS. Really, it's not that the tests are all coming back normal, it's just that the right tests aren't routinely done for a condition that's so challenging as CFS.

Brian Lehrer: We're talking about long-haul COVID, if you're just joining us with Dr. Marjan Islam from the Albert Einstein College of Medicine and Montefiore Medical Center. He's the Director of the COVID-19 Recovery and Engagement Clinic at Albert Einstein. Jerry in the Bronx, you're on WYNC. Jerry, thank you for calling in.

Jerry: [inaudible 00:13:47] taking my call. My daughter was infected with COVID more to a year ago. She and her husband had it and they recovered without going to the hospital. At that point, you couldn't get into the hospital in Boston. They were in Boston. Then about August, she started getting symptoms again. She continued with the hardness, the incredible headache and shakes and shivers, occasionally.

She called her doctor and her doctor said, "What do you want me to do about it? I don't know what I can do about it." She found another doctor in Boston, and that doctor ran very, very deep blood tests on her and found out that she had a 60% viral load and put her on a med that they use for herpes, an antiviral. She stayed on that for three months and her viral load went down to 6%, and she's pregnant.

[chuckle]

Brian Lehrer: Well, congratulations on that, and I guess on the whole story, although it sounds like it was pretty painful getting there. Is that a treatment that you've ever heard of, or does that story resonate with things you know doctor?

Dr. Marjan Islam: Yes. You're referring to the viral load of the SARS-CoV-2 virus or a herpes virus viral load?

Jerry: All I know is that Dr. Kumar said, “You have a 60% viral load and we have found infection in three of your organs."

Dr. Marjan Islam: I see. I'm not familiar on measuring viral loads for the SARS-CoV-2 virus, but what I will say is that we don't have any treatments, or we're not employing any antivirals in the outpatient setting for patients with COVID. Certainly remdesivir is an antiviral that we're giving in hospitalized patients, and that's been shown to help shorten the length of stay for patients that are hospitalized with COVID.

Now, one thing that you do mention that's interesting is the question of, if there is persistent viral presence in the blood or organs of patients that are experiencing long COVID, and that really is a question that is still a mystery. We know that patients are "negative for COVID" but sometimes after 14 days of infection typically. That is really measuring the presence of active viral shedding in the upper airway, the nose, nasal pharynx, but that says nothing really about presence of low levels of virus in other parts of the body, because we know that the SARS-CoV-2 virus can impact a lot of different organs.

That's why we're seeing so many different symptoms, and so many different organ injuries during acute infection and now beginning to appreciate that this may be happening in the long-term as well. That is shedding light on trying to understand the pathophysiology of long COVID. Is this low levels of viral presence? Is it viral proteins that are there that the immune system is not able to clear? There are still a lot of questions and a lot of answers that are left to be discovered.

Brian Lehrer: Elizabeth in Harlan, you are on WNYC. Hi, Elizabeth.

Elizabeth: Well, hello there, thank you very much for taking the call. I have one comment and one question. The comment that the doctor made initially that identified some set of long-haul with women, but these things were not identifiable by any of the tests. I'm a little concerned that, that hearkens back to the old thing of women being hysterical.

I would just like him to clarify that these things are really real, and that women, if they're even in the majority of those reporting it, it does not represent anything like the old-fashioned "women are hysterical" in the kind of symptoms that they present. The second thing is that I had a mild case of COVID. After that, I was pretty much fine. Then I started developing some fatigue, which I ignored.

I went and I had both vaccines and three weeks after the second vaccine-- I had the Pfizer. I developed this histamine response, and now I have itching all over. I'm wondering if any of the research conducted today, it has identified that as a long-haul problem associated with the persistent virus in the body or the vaccine itself.

Brian Lehrer: Thank you for both those questions, Elizabeth. Dr. Islam?

Dr. Marjan Islam: I would love to clarify the comment. What I meant by the epidemiology of women experiencing long COVID, part of that may be due to the pathophysiology of chronic fatigue syndrome. We're still learning about it, and some of it may be due to the different biology between men and women. We know that other autoimmune conditions such as lupus or Sjögren's, these are conditions of autoimmune diseases that are more prevalent in women. The fact that based on the epidemiologic studies, more women are complaining of some of these symptoms. It may be an explanation for the biologic basis for why women may have more long-COVID symptoms than men. Alternatively, it could be a demographic situation where women are more likely to engage with online surveys or seek medical care due to symptoms, like fatigue than men. This is something that we've seen in our clinic, a lot of other clinics, and just the survey data. When we look at thousands of respondents, when we break it down between men and women, pretty consistently, there are more women that respond to the surveys than men.

Certainly, there are a lot of different factors here that may explain the gender difference that we're seeing in this long-COVID population. Interestingly, it is clear from the hospitalized data that men are more likely to get sicker, but from what the studies have shown women seem to have a higher prevalence for this long COVID syndrome. Does that answer your question, Elizabeth for the first comment?

Elizabeth: Yes, I just wanted it to be clear that we weren't going back to the time when women would complain about things and the doctors would be so--

Brian Lehrer: Dismissive.

Elizabeth: Consider this to be a hysterical response, would consider this to have no basis in fact, and I just wanted it to be clear that, that may not be the case with what we're dealing with at this point in time.

Brian Lehrer: Thank you for that. What about her second question because we are going to run short of time on the histamine response and the itchiness?

Dr. Marjan Islam: That, I don't think has been well-characterized as a long-COVID symptom. It may be an adverse reaction to the vaccine that you've experienced. Vaccines are-- We've seen by and large incredibly safe and effective in preventing acute illness with COVID.

There are some suggestions that it may help prevent long COVID, but the response that you've had shortly after the vaccination may be somewhat of an allergic reaction. That can be managed with our allergy immunology physicians. They're really great in taking care of some of these symptoms post-vaccination with Benadryl or steroids, or things of that. There are therapies that we can give for patients that have had these adverse effects following vaccinations.

Brian Lehrer: You're talking specifically about your colleagues at Montefiore?

Dr. Marjan Islam: Yes, at the CORE clinic we have a network of referral physicians that are managing these post-COVID patients in all things related to COVID. There's so much literature and scientists coming out daily on this topic that at our CORE clinic, we've had a multi-subspecialty referral network that we're able to fairly-quickly and easily refer patients so that they can be seen and have their issues managed. Certainly, allergy and immunology is the division that manages these vaccine-related situations that some of our patients experience.

Brian Lehrer: All right. Elizabeth, if you decide to go to that clinic in the Bronx, tell them you spoke to Dr. Marjan Islam on the Brian Lehrer Show. We're almost out of time, but I want to pick up on something kind of related to that. She did mention the vaccines. Another study published in the Journal of the Royal Society of Medicine last week led by researchers at the University of Birmingham in the UK, reports that patients who experienced five or more Coronavirus symptoms in the first week of infection were a lot more likely to develop long-haul COVID.

I'm curious, if you found that to be the case in your research or in your practice, and as this pertains to people who've been vaccinated. I know people who are fully vaccinated who say-- They're still going to be really cautious because even though they feel safe in terms of serious COVID, that would lead them to be hospitalized or potentially die, feel safe from that. They're still worried about even getting mild COVID that could wind up with long-haul. I'm curious if you have anything yet on the impact of vaccination on the likelihood of getting long-haul COVID, if you get COVID at all, and on those clusters of symptoms that would indicate it.

Dr. Marjan Islam: Let me take that first question first. I have seen patients that have-- Typically, if they do have a number of different complaints, it does tend to persist. I have seen that shortness of breath and palpitations, those improve over time, but the neurocognitive and constitutional symptoms, like fatigue and the neurocognitive symptoms of brain fog or difficulty concentrating, those seem to persist.

Rather than recover over time, certainly the studies have shown wide variations in time course, certain cohorts recover, certain cohorts, if they've persisted after a few months, they seem to persist. It is still very heterogeneous and difficult to characterize, but there are certain symptoms, if patients are experiencing them, those seem to be more difficult to recover over time.

With respect to your question for the potential for infection following vaccination and its risk with long COVID. These are also areas that are still being investigated, but thus far it seems that the vaccines are very protective against severe disease, that would prevent hospitalization, but that still leaves the question on mild disease. Certainly, we know that some patients who are asymptomatic from the acute phase of COVID go on to develop long COVID symptoms.

I think the nature of the pandemic, the swings in risk based on local prevalence of disease, and the fact that we still don't know how effective vaccines are in preventing long COVID, these are still questions that are up in the air. We'll have to exercise caution.

Brian Lehrer: Some very good answers in this segment, and candidly some questions yet to be answered. Dr. Marjan Islam from the COVID Recovery and Engagement Clinic at Albert Einstein and Montefiore. Thank you so much for all of this.

Dr. Marjan Islam: Thank you, Brian.

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