A Better Understanding of Long Covid

[0] From New York Times, I'm Michael O 'Barrow.

[1] This is a daily.

[2] Today.

[3] Throughout the pandemic, long COVID has remained something of a medical mystery.

[4] Now, amid the latest surge of infections, a series of major studies are shedding new light on who is getting long COVID, and just how widespread the condition actually is.

[5] I spoke with my colleague, Pam Belloc, about what we're learning.

[6] It's Friday, May 20th.

[7] Pam, you have been reporting on long COVID since the term first emerged, and for the longest time, our understanding of it has been highly anecdotal.

[8] We have mentioned it several times on the show, and we know that lots of people are very worried about it, but we've never had that much real data about long COVID.

[9] And that seems to have now changed, right?

[10] Yeah.

[11] What we've been seeing in the past few months is studies that are looking at very, very large amounts of data, usually from medical records.

[12] And we've had enough time now.

[13] You know, the pandemic has gone on, obviously, for more than two years.

[14] And so we have had enough time now to be able to look at questions like how many people seem to be suffering, what kind of symptoms.

[15] they have, how long it's going on, who's at risk, that kind of thing.

[16] So we are getting a high level picture that helps us kind of color in between the lines a little bit and giving us a better sense of what this condition is like.

[17] And just to begin with, how do these studies define long COVID?

[18] Because the phrase itself has always felt pretty ambiguous.

[19] Yeah, and I think that definition still isn't entirely clear.

[20] Basically, the general definition is symptoms that occur after the initial COVID infection that people have had.

[21] Some places like the CDC start the clock a month or more after.

[22] So if you're still experiencing symptoms or you're experiencing new symptoms a month or more after you've had COVID, then you could be considered to have long COVID.

[23] The World Health Organization defines it starting at three months later.

[24] But basically, the simplest definition is if you're experiencing symptoms that are lasting weeks or months or emerging weeks or months later, that qualifies as long COVID.

[25] Got it.

[26] So symptoms that are occurring at least a month after an original infection and cannot really be explained by anything else.

[27] Exactly.

[28] And that's a really important point.

[29] Okay.

[30] And what are those symptoms according to the studies.

[31] Yeah, so the symptoms can really run the gamut and they can affect every part of the body, every organ system, everything from trouble breathing, coughing, gastrointestinal symptoms, problems with heartbeat issues and rapid heartbeat and dizziness and that kind of thing.

[32] Fatigue is really, really common.

[33] People just feeling so tired and unable to get back to their normal energy level and then when they try they can have setbacks there are a whole bunch of brain related or cognitive issues that people are experiencing you've probably heard the term brain fog sometimes that's sort of a catch -all term that's used for things like not remembering things not being able to concentrate not being able to pay attention the way you used to so pretty much anything that you can think of that your body does or that your brain does can become a symptom depending on on the person.

[34] It's an extraordinarily wide range of symptoms from one virus.

[35] Yeah, it's very nebulous at this point.

[36] And I think that's part of the reason that doctors and scientists are having trouble kind of pinpointing a definition.

[37] The other reason is that we don't really know what the underlying cause or causes are.

[38] And so I actually think that as we learn more, it may be likely that there end up being, you know, three or four different flavors of long COVID, that have different causes and that have a different set of symptoms.

[39] But right now we're still really very much in the discovery phase and the reporting phase.

[40] And so that's why people have had this sort of huge basket of, you know, something like 200 symptoms that different people have reported.

[41] What you just said feels important.

[42] Even though we have these major surveys that track thousands, thousands of people who have long COVID, you're saying we're not that much closer to understanding why COVID -19 causes these long -term varied symptoms.

[43] Right.

[44] And, you know, we're getting little hints that it might be related, for example, to the surge of inflammation that we know the virus causes when people first get infected.

[45] Some people get kind of a, you know, huge surge of inflammation.

[46] And so inflammation can cause all sorts of bad things in the body.

[47] And it's possible that people who experience long COVID have either ongoing damage from that inflammatory reaction or they're continuing to have inflammation that's causing damage.

[48] That's one theory.

[49] Another theory has to do with the immune system response.

[50] And these two things could be sort of related that for people who are experiencing it, their immune system just did not get the memo to shut down.

[51] Some people think that there may be little fragments of viral genetic material or even little fragments of the virus itself that are kind of hanging around, and they're sort of sending the immune system this signal to keep being activated when really there's just not that much for it to do.

[52] And so that's another theory.

[53] Interesting.

[54] So the best working theory we have so far for the cause of long COVID is that COVID itself triggers the body's protections to go into some form of overdrive and stay in overdrive even when the threat of COVID has subsided.

[55] Yeah, I think that's a leading theory.

[56] Okay, and Pam, what can we say about how many people seem to be experiencing these symptoms after a COVID infection?

[57] So again, one of those questions that has a very wide -ranging answer.

[58] The best estimates that I've seen from, I guess, several different studies range from about 10 % to about 30 % of adults.

[59] You know, it's a very wide range.

[60] The Government Accountability Office just came out with a report a month or so ago, and I think they said that as of March, they were estimating that there could be between 7 .7 million and 23 million Americans who had long COVID at that point.

[61] A lot of people.

[62] Yeah, I think it really is a lot.

[63] I mean, if you think about cancer, the government figures are that 1 .6 million people in the United States a year are diagnosed with cancer.

[64] This is a lot more than 1 .6 million.

[65] Yeah, you know, it's the size of a major city, you know, or two or three major cities depending on whether you're picking the upper range of that 23 million figure.

[66] So it's an awful lot of people.

[67] Right.

[68] On the other hand, 70 to 90 % of us who get COVID, and at this point, I think we can say us because almost everyone we know has gotten COVID, don't experience long COVID, which is the vast majority of people who get infected.

[69] That is a more optimistic way of looking at it for sure.

[70] Trying.

[71] And to be clear, what are the surveys telling us, these big studies, about how long these symptoms in long COVID persist?

[72] I mean, are they considered indefinite or do they eventually stop afflicting the people who have long COVID?

[73] Yeah.

[74] Again, I think it really ranges widely.

[75] So we are getting a sense that some people get better just with time.

[76] So that's a good thing.

[77] But I've certainly talked to many people who have had symptoms last well over a year.

[78] And sometimes new symptoms kind of emerge.

[79] after they think they've conquered a couple of things, something else will happen.

[80] And I think the other thing to sort of keep in mind here is that for many people, this is not a linear recovery process.

[81] It's not like, you know, tomorrow's going to be better than today, and it was better than yesterday.

[82] For a lot of people, especially with things like fatigue, when they sort of exert themselves and think maybe they can get back to the level of activity that they used to have, it will set them back so much that they may have to be lying on the couch for two days.

[83] And so it's a very difficult thing for people to kind of plan around and to be able to know how much they can take on and how much of their life they can return to, which gets very, very frustrating for people.

[84] No doubt.

[85] So now I want to turn to what we are now learning about who is getting long COVID.

[86] What can you tell us about that?

[87] Yeah, so these studies are really coalescing around a picture of the types of people who are developing long COVID.

[88] And I think there are five really interesting findings that seem to be pretty solid right now.

[89] The first finding is that many, many people who had mild or very moderate initial infections with COVID -19 end up getting long COVID.

[90] So you do not have to have been hospitalized with your initial infection to end up having lasting, very debilitating symptoms for months.

[91] And that is surprising to a lot of people, but several studies have documented this now.

[92] And one of them that I just reported on looked at 78 ,000 people who had long COVID and found that more than three quarters of them had never been hospitalized for, their initial infection.

[93] That is surprising because I always imagine that a prerequisite for long COVID was pretty meaningful bouts of original COVID.

[94] Yeah.

[95] And certainly people who are hospitalized for COVID have a very high risk of having long -term symptoms.

[96] There's no doubt about that.

[97] But what is somewhat surprising, but very, very true is that the majority.

[98] of people who are experiencing long COVID never had to be hospitalized.

[99] And that's because the majority of people who have COVID never have to be hospitalized.

[100] Right.

[101] So bottom line, a garden variety COVID can lead to long COVID, which is another way of saying having a very mild bout doesn't protect you from long COVID.

[102] Right.

[103] That's absolutely true.

[104] Even having no symptoms from the initial infection doesn't necessarily protect you.

[105] Interesting.

[106] I've talked to many people who have been in that category.

[107] Asymptomatic and still get long COVID.

[108] Asymptomatic or basically, you know, just a few days of mild illness and then several weeks later, they can't get off the couch.

[109] What is the second finding?

[110] So the second finding is that many people who have long COVID did have previous health problems.

[111] You know, things like diabetes, heart problems, autoimmune conditions.

[112] And in one study that I wrote about, you know, about two -thirds of the people had those previous health problems.

[113] But that means that one -third of people in that big study did not have any previous health condition.

[114] So it is definitely the case that people who were previously very healthy can still get long COVID.

[115] As one of the people I was talking to said, you know, it's sort of like a roulette wheel.

[116] We really don't know who's going to be more at risk based on what their health was like beforehand.

[117] So this is yet another way in which long COVID seems to afflict those who might not at all expect to get it because either they had mild COVID or because they're pretty healthy.

[118] Yeah.

[119] And, you know, the third finding is kind of also in that unexpected category.

[120] And that is that we're seeing a whole lot of people who are younger, basically in kind of the prime of their lives who are getting long COVID.

[121] Many studies now are finding that people who are reporting these long -term symptoms are in their 30s, 40s, 50s.

[122] These are people who led very active lives, and they are really struggling with long COVID.

[123] And we don't really know why that is.

[124] I mean, one theory is that people of that age group, especially active people, they are no doubt.

[125] the impact of these symptoms more than maybe somebody who is a lot older and already has some health issues, maybe already has some, you know, memory decline.

[126] So it could be that it's just so noticeable that these are the folks who are coming forward and seeking help at clinics and that kind of thing.

[127] But it is definitely a real aspect of the long COVID picture.

[128] And I've talked to many people who fit into that description.

[129] And, you know, just one.

[130] who I've been following now for several months, a 34 -year -old woman named Samantha Lewis in Aurora, Illinois.

[131] She has a very demanding job, which she was holding down with no problem before she got COVID, and also raising a child with special needs, and also doing roller derby.

[132] And she was just very active and a terrific multitasker.

[133] and she had a relatively mild case of COVID and several weeks later she just entered kind of a spiral where she had just many symptoms, fatigue, lots of brain fog.

[134] She started assigning three employees the same task and not remembering she had done that, not being able to remember how to do basic things, tremendous fatigue, had to stop the roller derby, had to stop driving, I mean, all sorts of stuff.

[135] stuff like that.

[136] Life -altering symptoms here.

[137] Life -altering symptoms that went on for well over a year.

[138] And unfortunately, I've talked to many people with long COVID who have very similar experiences.

[139] And, you know, doctors at post -COVID clinics have told me that her situation is really not an extreme case.

[140] Hmm.

[141] That makes me wonder, Pam, about kids, the youngest among us.

[142] Does being under the age of 18 or under the age of 12, does that seem to be any kind of protection against long COVID?

[143] So we do seem to be finding that kids are at lower risk for this, maybe much lower risk.

[144] And that's good news, right?

[145] Yes.

[146] However, there certainly are kids.

[147] Most of them seem to be in the preteen or teenage years as opposed to the really young ones.

[148] who are experiencing symptoms like this as well.

[149] And I've talked to several of those kids who, again, were previously sort of healthy, active on the tennis team, on the basketball team, and had relatively mild COVID, and then weeks later, unable to concentrate in class, unable to play basketball.

[150] So it can afflict kids, and there are clinics that have been set up specifically to, treat kids with long COVID.

[151] But I guess the good news there is that it does seem to be less of an issue for kids and fewer kids are being affected.

[152] Okay.

[153] And what about the fourth finding about who is getting long COVID?

[154] So the fourth finding is that women seem to be at somewhat greater risk for long COVID.

[155] But we still don't really know if that is because there is a physiological difference are women just kind of biologically more at risk which could be possible women are more likely to have certain autoimmune diseases and it's possible that autoimmune conditions increase your risk for something like long COVID or they sort of mirror what's going on with long COVID in some ways so there could be a reason why being a woman is going to put you at higher risk but it's also possible that women may be more likely to seek help for some of these issues.

[156] So it's still, you know, not clear why, but we are seeing that maybe 55%, maybe 60 % of patients are women.

[157] Pam, there really does seem to be a dismal quality to all of these findings about who's getting COVID, because I think it's fair to say that we all want long COVID to be exceedingly rare, and from these findings, it's not.

[158] Then perhaps we want to think, well, If you're healthy, then you're safe from long COVID.

[159] That's not proving true.

[160] And then we want to think, well, if none of those other things are true, we want long COVID to be generally mild and highly manageable.

[161] And in some of the cases you're describing, like this 34 -year -old woman, it's not.

[162] So this is starting to feel, and I want to be careful with this wording, but it is starting to feel a little bit like a pandemic within a pandemic.

[163] People are definitely describing it that way, sort of like a pandemic within a pandemic or a post -pandemic pandemic.

[164] And it's affecting a lot of people.

[165] It's going to affect a lot more people.

[166] So it is a daunting problem, for sure.

[167] I think one signal of optimism in, I would say, the fifth finding that's worth noting is that it does seem like vaccines can be helpful in the long COVID picture.

[168] There are a few studies now.

[169] that suggests that if you're vaccinated and then you get COVID, you're less likely to get long COVID.

[170] But none of these studies are saying that it prevents it altogether.

[171] It just might reduce your risk.

[172] And for those who didn't get vaccinated and suddenly get long COVID, do we know anything about what happens when a vaccine is administered afterwards?

[173] Does that do anything to lessen the impacts of long COVID?

[174] So there have been some surveys of people in that category, and I actually wrote a whole story about this, of people who got COVID before vaccines were available, had terrible fog and other types of symptoms, then got vaccinated, and some of those people, you know, they think 30, 40 percent maybe of those people did feel better after the vaccination.

[175] But most people didn't really see any difference and there was a small percentage like 14, 15 % of people who actually said they felt worse after vaccines.

[176] So again, you know, highly variable and still an awful lot we don't know.

[177] But at this point, Pam, in the pandemic and in our conversation, I think we'll take any measure of good news, of optimism, of not bad.

[178] So thank you for that.

[179] You're welcome.

[180] We'll be right back.

[181] So, Pam, what are the implications of all this?

[182] Because we're talking about a set of very serious symptoms across a very large population.

[183] And we're in a moment in the pandemic when we're now realizing, because of the reporting of our colleagues, that many people will not get COVID just once, but perhaps get COVID multiple times.

[184] So when we think about all that put together, what are the implications of all this?

[185] I think the implications will be very far -reaching.

[186] I think they are going to obviously affect individual patients.

[187] It will affect society and all the institutions of society, and it will affect medicine itself and the way medical care is delivered.

[188] Let's start with individuals.

[189] How do you start to think about the implications for individual people suffering from long COVID?

[190] Yeah, well, I think the 34 -year -old woman that I described earlier, Samantha, is a really good case and point.

[191] She had to cut back on her job for a while.

[192] She spent several months going around to different doctors, including a neurologist who basically told her to try harder.

[193] and when she finally got off the wait list for a post -COVID clinic about five or six months after she had originally gotten infected, she was tested by neurologists and her cognitive testing put her in a category of almost kind of a pre -dementia category.

[194] Wow.

[195] And she was able to enter a program that's called Cognitive Rehab, which is a kind of program that has been used for people who have strokes or brain injuries or concussions, things like that.

[196] And so I followed her for several times a week to physical therapy, occupational therapy, memory therapy.

[197] And she was very dedicated and very determined.

[198] And it did end up helping her get back to a level of function where she is better now, but she's not completely better.

[199] And her life and sort of the tools that she needs to function have completely shifted so she makes lists of everything she has note cards everywhere just so that she can remember to do things and one of the things that was just so striking to me was I was able to visit her and spend a lot of time with her and in her bathroom posted on the bathroom mirror is a bright fuchsia index card so bright that she couldn't possibly miss it.

[200] And on it, she's scrawled the nine steps that are required to brush and floss her teeth so that she can remember the order.

[201] And she was infected in October 2020.

[202] So we're talking over a year and a half now.

[203] And she's still using that index card.

[204] So in this individual case, the implications are.

[205] more or less a complete reordering of Samantha's life.

[206] Yes, and I think she's not unusual.

[207] I've heard from many people who have had similar disruptions and similar adaptive strategies and workarounds and things like that that they've needed to adopt in order to be able to do some of just the basic activities of daily life.

[208] I wonder how stories like that and the knowledge that they're not all that rare starts to change individual risk tolerance when it comes to COVID, knowing that long COVID of that kind might be a possibility.

[209] And I ask that particularly because the era of precaution during the pandemic feels like it's come to an end, right?

[210] Mandates have fallen away, even in places like New York City where I am, where infections are surging right now, and the government might be expected to intervene, it's not.

[211] There aren't going to be any mask mandates, again anytime soon.

[212] So in this moment where people are very much toggling between trying to get back to normal, but also seeing these big spikes in cases, how should we be thinking about long COVID in the kind of risk judgments that we all have to make in our heads?

[213] And I've had to make in our heads since the beginning of the pandemic.

[214] You know, it's a really good question.

[215] And every time there is a movement to relax restrictions or to characterize, say, a variant as mild.

[216] You hear from many people in this very large long COVID community saying, wait a minute, people, you really need to be thinking of the long term consequences here because it doesn't matter if a variant is mild.

[217] You could still get long COVID, right?

[218] And even though, yes, we do have good therapies now to help people stay out of the hospital, they are still at risk for long -term symptoms.

[219] So even though scientists think, you know, the majority of people won't develop long COVID, it's still something that people should keep in mind when they are trying to calculate their individual risk.

[220] They should be thinking not only about getting infected with COVID, but also about the potential long -term consequences of that infection.

[221] So moving from individuals to the larger society, what are the implications of having 7 million plus people?

[222] people in a country like the U .S. with long COVID.

[223] Yeah, I think they are going to be very substantial implications and they will last for a long time.

[224] I mean, with COVID itself, you already have a situation where there are going to be people who are going to be getting sick and they're going to have to take days off from work.

[225] And if you add in long COVID, you're just multiplying the number of people who have an issue like that.

[226] And, And long COVID, by definition, can last for months and months.

[227] So when are you ready to get back to work?

[228] When can you handle your job?

[229] That already is an issue for many people and is only going to become more of an issue for more people.

[230] So it's going to have huge implications for working people, for family life, for the folks who have to help out the people who are sick.

[231] every aspect of what makes society work is going to be affected by long COVID.

[232] Right.

[233] And that will presumably widen the already existing gap between those with benefits like paid sick leave and those without it, which was already exacerbated by regular COVID infections and will only deepen with long COVID.

[234] Absolutely.

[235] And that gap is also getting wider and wider.

[236] because of access to health care.

[237] There are no magic treatments for long COVID.

[238] And if you look at a program like the woman I was describing, the 34 -year -old woman Samantha, the therapy program that she undertook, she's not at all an affluent person, but she did have health insurance.

[239] And that kind of program takes months and a lot of dedication and an employer who's going to let you take time off to attend physical therapy or occupational therapy.

[240] And many people, especially the communities that were hardest hit by the pandemic, do not have the ability to get access to those kinds of programs or to go to see multiple doctors for many different kinds of symptoms.

[241] Pam, you mentioned the implications for the medical world.

[242] What are those?

[243] yeah i think it is beginning to transform hopefully at least somewhat in a positive way the way that the medical world looks at symptoms like this so before long covid there have been many patients who experienced some of these types of symptoms that are considered you know a little bit nebulous hard to treat.

[244] I'm thinking about conditions like chronic fatigue syndrome or myelgic and cephamiolitis fibromyalgia, all of these conditions that had somewhat similar symptoms to some of long COVID sufferers and have been dismissed or stigmatized or just completely not understood for decades.

[245] But there is, a brighter light being shown on long COVID as a real thing that we need to take seriously and do research on and pay attention to.

[246] So because of that, I think the hope of people in communities that have been suffering from these other conditions for years is that their conditions will get more attention, more validation.

[247] And doctors may even be able to figure out more about what is causing myelogic encephomyalitis or chronic fatigue syndrome or fibromyalgia, it may turn out that these are all types of post -viral conditions and they may have some very similar underpinnings and maybe they have similar treatment.

[248] So that could end up being a positive outcome that so much attention is being paid to long COVID, it might help us crack the mysteries of some of these other conditions as well.

[249] It's interesting because for a long time, it felt like long COVID was potentially going to be relegated to the world of those conditions, like chronic fatigue, like fibromyalgia, conditions that have been, for many, dismissed.

[250] And what you're saying is that now that long COVID is being taken seriously and is being better understood that it could help medicine take those other conditions seriously as well?

[251] I mean, that could be the case, or at the very least, there's hope that people with these conditions won't be as stigmatized or feel as kind of forgotten as they have been.

[252] I think another thing that sort of seems to be happening here that's very interesting is that a lot of the medical knowledge that we are getting about long COVID is coming directly from patient groups themselves, from communities of very energized and organized patients who are doing their own surveys and contributing to research studies and raising questions and showing up at medical meetings.

[253] And so there's this very grassroots -driven way, that medical knowledge is being acquired here that's really quite different.

[254] It's not coming from the laboratory.

[255] It's coming in a lot of ways from the patients themselves.

[256] And that may end up being a good thing for, you know, all kinds of patients if doctors realize that they need to listen to patients more and take patient reports seriously.

[257] That could be something that helps transform medicine in a positive way.

[258] Right.

[259] it might make medicine more sensitive, more thoughtful, more responsive to patients, and overall, perhaps, better.

[260] I think there's a potential for that.

[261] That's the hope.

[262] O 'PAM, thank you very much.

[263] We appreciate it.

[264] Thank you.

[265] We'll be right back.

[266] Here's what else you need to another day.

[267] The U .S. Senate has approved by far its biggest package of aid to Ukraine since it was invaded by Russia.

[268] $40 billion in assistance for weapons, medicine, and food that has already been approved by the House.

[269] The vote showed the depth of bipartisan support for financing the war.

[270] It was opposed by just 11 out of 100 senators, all of them Republican.

[271] And the Oklahoma legislature has adopted a bill that prohibits nearly all abortions starting at fertilization.

[272] if, as expected, the state's governor signs it into law.

[273] It would become the strictest abortion law in the country.

[274] It was the first major restriction on abortion since the emergence of a draft Supreme Court opinion overturning Roe v. Wade, and it highlights the eagerness of Republican -led states to prepare for a post -Roe world.

[275] Today's episode was produced by Rachel Quester and Chelsea Nand.

[276] with help from Diana Wynne and Stella Tan.

[277] It was edited by Paige Cowitt and Michael Benoit, contains original music by Dan Powell, and was engineered by Chris Wood.

[278] Our theme music is by Jim Runberg and Ben Lansford of Winderly.

[279] That's it for the Daily.

[280] I'm Michael Bobaro.

[281] See you on Monday.