Melissa Harris-Perry: This is The Takeaway, I'm Melissa Harris-Perry. Chronic pain, lasting heart problems, breathlessness, powerful fatigue, memory loss, thick brain fog. These are just some of the long symptoms that persist for many people long after they first test positive with COVID-19. Some studies show that as many as half of COVID survivors experienced some sort of lingering symptoms. Here's Georgia Linders, who spoke to us about her symptoms back in August. Now, this was following the Biden Administration's announcement that long COVID qualifies as a disability under the American Disabilities Act.
Georgia Linders: This announcement and everything was really validating, but it's about a year too short almost for me because I already actually lost my job. I had been working for 10 years at a company and I was fighting through the times when I would feel better than worse. When it was worse there's 20 different symptoms that I had, and this is one of my main symptoms. Like right now, my brain is slowing down so I have to pretty much do one thing at a time. It's hard for me to do multitasking.
Melissa Harris-Perry: Some of you told us about your experiences with long-haul COVID symptoms.
Linda: Linda, from [inaudible 00:01:34] Beach. I haven't got my taste or my smell back since October, and I've had high blood pressure to the point where I've had to be medicated and I'm in my early thirties.
Tom: My wife and I had COVID in summer of 2020. I only had it for about four days, but the cough never quite went away. Even months later, I would have a cough, and all of a sudden I had to spit or swallow and it never went away. I didn't have that before, it's only just now clearing up. It still happens now and then. My name is Tom I'm in Sacramento, California.
Laurie: My name is Laurie from Greenville, South Carolina. Yes, I have experienced long COVID. As a fully vaccinated person, I was very discouraged to get COVID in October. I have completely lost my sense of smell and taste. The exhaustion is profound. Going through that is not fun. I hope somebody gets an answer on how get through this.
Laurie: This is Laurie calling from Oakland, California. I am in my 22nd month of disabling debilitating long COVID. I also developed myalgic encephalomyelitis from the long COVID and my doctor has now declared me TPD, Total and Permanent Disability. In March 2020 when I first became ill and then when I recovered and started to develop long COVID no one cared. Thanks for taking on this topic.
Melissa Harris-Perry: That feeling that no one really cares about long COVID, that not enough attention has been paid to the illness, that was echoed by one of the leaders of a COVID long-hauler group that the takeaway reached out to.
Anne Wallace: Hello. My name is Anne Wallace, and I'm from Jersey City, New Jersey. I'm the Vice president of the COVID-19 Longhauler Advocacy Project, which is working to advocate for the needs of long haulers. We are looking to have the number of people experiencing long COVID counted so that the US can better prepare for meeting the needs of people who are struggling to get better, struggling with their health, now disabled, in many instances or out of work. This has been a mass disabling event for the United States, and we feel like nobody has their eye on this.
Melissa Harris-Perry: Nearly two years into this pandemic, doctors still don't know much about why some people develop these long-lasting symptoms and others don't. But a study published last week by the scientific journal, Cell, found several factors that were identified early in a person's coronavirus infection that could show increased risk of developing long-term symptoms. Dr. Jason Goldman infectious disease clinician and researcher at the Swedish Medical Center in Seattle, Washington is here. He's also a lead clinical author of this study on long COVID. Welcome to The Takeaway Dr. Goldman.
Dr. Jason Goldman: Thanks, Melissa. I love your show.
Melissa Harris-Perry: Oh, thank you. Talk to us. How was this research conducted, and what were some of the big takeaway points from it?
Dr. Jason Goldman: Sure. We did a large study of over 200 patients with COVID and we did a deep dive to understand the biology of long COVID. In this study, we identified four main risk factors, which when measured at the time of the acute diagnosis of COVID, can predict who's going to go on to develop long COVID.
Melissa Harris-Perry: What did you find? Are there particular risk factors associated with the likelihood of developing that long COVID?
Dr. Jason Goldman: Yes. The four things that we identified are presence of Type 2 diabetes, the SARS-CoV-2, or the virus that causes COVID detectable in the bloodstream at the time of COVID diagnosis. The third thing was another virus in the blood called Epstein-Barr virus, which is the virus that caused the clinical syndrome, mono. The last thing was autoantibodies, which are proteins the body makes against itself and they're pathogenic and cause rheumatologic or autoimmune diseases like lupus.
Melissa Harris-Perry: Some of those same factors that may an individual more likely to contract COVID at all, because I know I hadn't really heard the Epstein-Barr one before, but certainly the Type 2 diabetes, certainly autoimmune conditions are associated with greater vulnerability for contracting the disease, and then that is also a vulnerability for long COVID.
Dr. Jason Goldman: Exactly. Those were things that at the time of diagnosis predicted the later development of COVID, so the risk factors for going on to develop the persistent symptoms that define long COVID.
Melissa Harris-Perry: All right. Let's walk through some of those. Let's start with Epstein-Barr, which might be a little less well-known for folks. What is that Epstein-Barr virus, and why is it a risk factor for long COVID?
Dr. Jason Goldman: Epstein-Barr virus also known as EBV is a virus of the herpes virus family. It's a cousin of the more well-known herpes virus and it's in approximately 90% adults. When adolescents get infected, they sometimes will contract a prolonged fatigue illness called infectious mononucleosis or mono. This tends to be a lifelong infection that is mostly dormant throughout someone's life. The virus does go to sleep and wake up occasionally we call that the lytic and the latent cycles where it wakes up oftentimes in states of severe illness, like critical illness, for instance. Epstein-Barr virus and other herpes viruses can wake up from their sleeping or latent state.
We showed in this paper, patients at the acute COVID diagnosis who have Epstein-Barr virus in the blood, that is a risk factor of who goes on to develop long COVID. Now, these herpes viruses are complicated in themselves and the association with another viral infection is also complicated. We'll have to do more research to understand if that's a feature of just being critically ill or if that's actually associated with that feature development of long COVID.
Melissa Harris-Perry: Right. That's helpful. When you're saying that it's in 90% of adults, that's obviously an enormous potential pool of individuals, and this notion of waking and going back dormant. So it could be that COVID is just acting like other kinds of illness would act relative to this, is that right?
Dr. Jason Goldman: Yes, but COVID also greatly affects the immune system. That's a central feature of it and this sleeping and waking cycle of herpes viruses, like Epstein-Barr virus, that has to do with our immunologic control. I don't think it's a totally random coincidence. I think they're related. I think that we just don't know yet if that waking up with the other virus is going to be directly causal or directly related to the development of long COVID. It's definitely associated, from what we've seen.
Melissa Harris-Perry: All right. Let's now talk about Type 2 diabetes and maybe you could do two things. One, just remind folks how Type 2 is different from Type 1, and then give us a sense of how it's related to long COVID.
Dr. Jason Goldman: Sure. Type 2 diabetes and Type 1 diabetes are the two different cause of diabetes that affect the body's ability to deal with sugars. Type 1 diabetes is actually the autoimmune type of diabetes and Type 2 diabetes is associated with metabolic syndrome, meaning other conditions like being overweight or high blood pressure. Both of these, but predominantly Type 2 because it's so common is really associated with getting COVID and being severely affected by COVID.
It's not surprising that we identified this in our study as one of them major comorbid conditions or diseases that's associated with the development of long COVID. There's also, at this point, a pretty well-known association with the more severe COVID you have at the beginning, the more likelihood that you're going to have long COVID after the weeks and months tick away.
Melissa Harris-Perry: That severity, that's measured through self-report, or is that actually measured in some biomarker?
Dr. Jason Goldman: There's different ways to measure severity of COVID and, largely, we think about it as how much oxygen you need is the central marker. Patients who are experiencing fever and cough, and muscle pains, and headache at home, but don't require oxygen, they have mild COVID even though it doesn't seem mild. The patients when they're going through it, it's intolerable, that's still considered mild COVID whereas someone who can't breathe on their own, and comes to the emergency room, and gets put on a ventilator that would be severe or critical COVID.
Melissa Harris-Perry: As I can remember in the first year of the pandemic, in particular, there were these moments when we would applaud those who were leaving the hospital after having been hospitalized for quite some period of time. It always felt miraculous because so many people did not leave the hospital and yet are you suggesting that those are the very folks most likely to, or among the group of people highly likely to now be experiencing those long COVID symptoms?
Dr. Jason Goldman: Yes. The severity of illness probably relates to some tissue injury in organs or organ systems, and those injuries take time to heal and they persist.
Melissa Harris-Perry: One last thing quickly to get in here before we take our break, this was a relatively small sample. Is that right?
Dr. Jason Goldman: Yes, we studied over 200 people so for the deep dive that we did that's actually a fairly large study. We also did corroborating analysis on a second cohort of 100 patients.
Melissa Harris-Perry: Dr. Goldman thank you. You've helped me, and I think helped many of our listeners to understand that constellation of risk. Talk to us a little bit. I mean here we are nearly two years or I guess more than two years down to the pandemic. Do we know how many people or what percentage of COVID survivors are now impacted by long COVID?
Dr. Jason Goldman: I don't know exactly if there's been scientific estimates of this. It's known to cause symptoms in millions of people. We've had 75 million people in the United States affected. Almost all studies that look at this, and there was a recent meta-analysis which means a collection of studying all the different studies, showed that there was symptoms in 50% of people persisting.
I think it might be a little bit lower than that but maybe to 30% to 50% of patients will experience symptoms after the first two months or so. That's just millions and millions of Americans are either experiencing long COVID right now or have experienced long COVID in the past.
Melissa Harris-Perry: There's long and then there's long. Again, two years has felt like a abusively long time to be in a pandemic, and yet, do we have a sense of whether these long COVID symptoms are going to continue to impact people for a decade, for the rest of their lives, or if as horrifying and difficult as it is, it's still maybe a mid-range long?
Dr. Jason Goldman: Long COVID is a very complicated syndrome it can affect many parts of the body and it likely has many different causes. Some of these causes are things like tissue damage and also inflammation or autoimmunity or even persistence of the virus or viral antigen or even psychosocial factors. I think that, given that the syndrome is so multidimensional and there's different causes, that there's going to be different time horizon on the resolution of the long COVID.
Let me give you an example. There's a lot of patients that have the persistent fatigue or brain fog. Thankfully, those things seem to go away in the majority of patients. There's other patients who might have permanent tissue damage. For instance, some of the respiratory or breathing problems that might develop after COVID. I'm thinking of one of my patients who had smoking-related lung disease before COVID, but it was mild and then after COVID he never really got off oxygen, so that's likely to be permanent for that patient. I think there's going to be a range, and it might depend a little bit on the specific manifestation of long COVID.
Melissa Harris-Perry: As a college professor living and working on or near campus right now, as Omicron has been ripping through our community, most of the young people are themselves quite healthy. Initially, we have a very vaccinated campus and yet in a class of 20 I might have five or six who are out each week with positive COVID tests.
So many of my young people are saying, "Well, we're just all going to get it now, that it's like this Omicron so contagious everybody's going to get it but as long as we're vaccinated and basically healthy we'll just have it, it'll be like flu will be fine on the other side." I have like parental angst and want to say, "No, no, there's this other thing, long COVID, that might really impact you for a very long time."
Dr. Jason Goldman: There's definitely going to be a lot of young, healthy people that experience very mild illness, maybe even asymptomatic, and don't experience any long COVID. Even right at the beginning of the pandemic, we knew that 80% of people had no real detectable symptoms or very mild illness.
This notion that because I'm vaccinated means I'm out of the risk window, I think I hope that's going to be true in the future when there's a better herd immunity from vaccines and natural infections. I don't think we're quite there yet to lower a guard. People have different risk tolerance for this, so I think we're seeing, of course, the wide range of opinions that people are holding and sometimes track with their political affiliations.
Melissa Harris-Perry: Sure. For people who are experiencing long COVID and many of them, people who were infected by COVID long before there was a vaccine even available, many of them are feeling that their needs are simply being by the medical community, by the social and political world. Again, it's just about recovery from that acute initial case. Is there some reason for optimism based on your research?
Dr. Jason Goldman: Absolutely. I think our study is one of the first major deep dives into the biology of long COVID and besides the risk factors, we've also uncovered a number of other features about the immune system, about hormone levels that are hopeful to me. I think will be a foundation for future research and development of treatments.
Let me give you an example. We showed in this paper that patients who are experiencing long COVID had lower stress-hormone levels, cortisone than people who weren't experiencing long COVID and had previous COVID and also compared to healthy controls. That's something that I'm really excited about because it's essentially immediately actionable in the clinic. I can do some tests on my patients and show if they have low cortisol levels and replace it with steroids. That's a hopeful feature. There's other things in the paper too that point to where we can develop treatments.
Melissa Harris-Perry: Dr. Jason Goldman is infectious disease clinician and researcher at the Swedish Medical Center in Seattle, Washington, and the lead clinical author of the recent study on early factors that could indicate risk of long COVID. Thank you for joining The Takeaway, Dr. Goldman.
Dr. Jason Goldman: Thanks for having me, Melissa.
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