Breakthrough: Long Covid’s Early Origins

with this whole virus thing? And she got an email from her work saying that she didn't have to come in the next day, that they were going to start, you know, take a few days off. Midway through the evening, Sabrina turns pale and suddenly doesn't feel well. We both kind of looked at each other like, isn't it couldn't you know, you don't even want to speak it out loud.

And of course at that point, there was I think maybe one case of community spread confirmed in New York City, so it really didn't seem very likely, but just in case, we were like, you should go home right away, go home, you know, to sleep it off, and I, you know, did a light maybe cleaning of my apartment. Three days later, Fiona starts feeling unwell. When the first symptoms hit, it was it was a Friday night, and um, it felt very bizarre. I I could tell right away that I

had a fever and a headache. Of course, my mind went, who could this be COVID? And then, of course your mind also goes to the worst case scenario. This is a novel virus. It's a deadly virus. You know, it seems very scary what could happen here? But if you're young and otherwise healthy, you really don't have anything to worry about. You should be able to write it out at home like a common flute. At least that's what

Fianna was hearing. When she wakes up the next morning on Saturday, she has a cough, and by Sunday it's worse. I felt very nauseous and I vomited. I remember I vomited once, but ultimately I just feel like I couldn't catch my breath. I kept kind of, you know, wheezing, and just like feeling like I couldn't get enough oxygen, but it wasn't a feeling I'd had before, so I was confused by it um And then the whole next day that feeling got worse and worse. Fianna talks to

a doctor. He says she must go to the emergency ring. Fianna is only in the hospital for two nights, but when she gets back to her apartment, she notices something is different. On the night I came home from the hospital, all I wanted to do is sleep, and I wanted to set up my room to make it, you know, nice for me to sleep. And so I took out some lavender essential oil and I unscrewed the top and I didn't smell anything. I actually thought someone had replaced

the essential oil with water. At first, I was like, I guess maybe I can't smell, But we're not going to worry about that right now. A few days later, Fiona is on the phone with her friend, said Barina, who asks her a question, And she said to me, have you lost your sense of smell? And I said, yes, have you? And she said yep. And I thought it was maybe a separate like seasonal allergy or something like that. So we were having this back and forth about whilst

of smell. Now we know it's a COVID symptom, At the time, it really wasn't being talked about loss of smell, high fever. Fiona had a classic case of COVID before she knew what a classic COVID case was, but there was more she didn't know. She was also about to join a special class of patients we now know them as long haulers. At the start of the pandemic, it was presumed that if young adults like Fiona got COVID, they'd feel pretty miserable for several days and be completely

recovered within three weeks. But we now know that's not always the case. The vast majority of people survived the infection, but some developed new symptoms days or weeks later, and others described never completely recovering months or even a year after their infection. These persistent conditions represent the pandemics second chapter. They mean we're going to be living with the ramifications of COVID and learning how to treat them for a

long time. This season of prognosis is called breakthrough. It's the study of the legacy COVID is leaving behind. We will explore how scientists are advancing m R and a technology used in vaccines, and we'll look at how we're preparing for the next pandemic. In the first four episodes, we'll be talking about what we know and don't know about long COVID. Our understanding of this emerging condition has

been shaped by disparities past and present. A patient lad movement has once again raised the alarm, but this time has ensured that those with the lived experience of long COVID are recognized alongside the experts treating and studying them. I'm Jason Gale, Chief bio security correspondent and a se the editor at Bloomberg News. From the Prognosis podcast. This

is Breakthrough. After Fiona realizes she's lost a sense of smell, she and a friend, Sabrina, start looking around online for similar stories, hints that patients are experiencing gastro intestinal upsets and other things not listed as COVID defining symptoms by health authorities. That was what kind of made a click for both of us. And then she was doing some online slew things. She found a Twitter thread from somebody

who had lost their sense of smell. We found an article about someone from a cruise ship who had had g I issues, and so we started to piece it together a little bit. But I think what really changed things for me was connecting with even more pay ships, and that happened after I wrote about my experience in

being hospitalized in The New York Times. Fianna is a journalist and a TV producer, and on March twenty just a couple of weeks after her infection, she writes in All Bed in the New York Times titled on twenty six coronavirus sent me to the hospital. And all of these COVID patients started reaching out to me on email, on Instagram and Facebook. And a lot of them were young people like me, and a lot of them lived alone or lived in cities without their family nearby, and

so they were navigating their care completely alone. And a lot of them had had more initially mild symptoms than I had, So you know, some of them said, oh, well, my fever never got above a hundred, but I still have this fever two weeks later. Over the next few weeks, more and more people start contacting Fiona about their own experiences. There are similar themes in their stories. The symptoms specify

did and they weren't getting better. It all seems to fly in the face of the health guidance that's out there at the time. In like March, Fianna's friend Sabrina suggest keeping everyone looped in VIRAC group chat, and that is what gave birth eventually to the body politic COVID nineteen support group. And so I was also able to say to these other people, yeah, I'm having the same

issue and validate their symptoms. And that was when I began to wonder if maybe recovery from this was not as simple as the media was making it out to be. Fianna wants to get these stories out some way, so in mid April, she publishes another piece in the New York Times. To my knowledge, it's really the first article in a mainstream publication on what we now refer to

as long covid. Rita's immediately respond and I also included a link to sign up for the support group that I had started, just because you know, my editor was like, might not throw that in and and if you're mentioning the support group, And overnight, like within twenty four hours of it being published, we had two thousand people sign up to join uses, people from Seattle to London joined the group.

Too big for Instagram, they moved the forum to WhatsApp, but then we got too big for WhatsApp, and so then we moved to Slack. I can't describe to you how constant the conversation wasn't that WhatsApp group in that twenty four hours. It was like no one could even reply to each other because everyone was writing so constantly that the messages were coming in too fast to see it, and I was just glued to my phone, completely shocked. Fiona is more than people I have joined the group

since it launched. But bringing people together in this way hasn't just been about sharing information and providing mutual support. It's also allowed members to actually lead research on long COVID. Many in the group have backgrounds and science and health in May. They put those skills to use by creating a server. They ask questions on everything from the nature and severity of symptoms to the impacts of long COVID

on their lifestyle. Roughly sixty people reply. And I think also once we saw that data and we saw it all mapped out, and once I realized this is not just a support group that I'm running and I'm helping people. There's leaders forming all over the support group and little initiatives and advocacy projects popping up right and left. I think seeing the patient led research collaborative made me realize

that that was going to happen more and more. And that was when I felt like, Okay, this is this is big, it's it's it's going to have an impact beyond just me and this little group says. This is one of the first compilations of long term symptoms, and it was created by a group of volunteers. The data generates buzz, but long COVID is still not formally recognized by the medical establishment. By this point, the owner and body politics, we'll have to do even more to get

the medical community to take them seriously. The pandemic was not the first time patients have demanded the medical community recognized their condition. Forty years ago, gay men with a quiet immune deficiency syndrome were being actively denied treatment because of fear, stigma, and prejudice. Robert Chips Schoolly was a newly minted infectious disease physician working at Massachusetts General Hospital, one of Boston's premier medical institutions. When AIDS struck in

the early nineteen eighties. He says the hospital refused to provide a certain treatment for those dying from AIDS that didn't want to be the aide hospital in town. They had no qualds about getting the newest cardiac barpouse device, but they didn't want to have the best HIV TO

equipment because they didn't want to attract patients. Chips stepped down as chief of Infectious Diseases at the University of California, San Diego a few years back, but continues to consult there and as editor in chief of a major medical journal in the field. Jip says it was the patients and their supporters who mobilized to tackle prejudice and overturned the lack of care. The community did a good job of trying to shame the hospitals into doing what they

should have done the first place. And there was such discrimination at the time that hospitals had these crazy ideas that donors would not come if they thought that AIDS patients were there, that it would gather hospitals about name so a lot of the demonstrations about this I think shamed some of the hospitals into doing the right thing.

Jip says. It took a while for the National Institutes of Health, which has led AIDS research globally, to realize that doing the right thing would ultimately benefit medical institutions. For while they wanted the research but not the patients, and then they realized they couldn't have one without the other. And the places that we're doing the research became the places that emerged as the centers of excellence in age care,

age research, and indeed all of infection diseases. So in the long run, it was the hospitals have jumped in early in the medical skills, are jumped in early, really profited about making the right decision. She says, the medical system is doing a much better job with responding to the nights of longhouls. Back in the summer of the oer and body politic was still trying to raise awareness of the plant of sufferers. Fiona says she drew on

lessons from the AIDS movement. When HIV AIDS first came on the scene in the US, they didn't have Slack, they didn't have Instagram. They worked with what they had right they were setting up hotlines to answer people's questions, and I remember reading about that, and really that resonating with me, the idea that people who were not doctors were answering medical calls and giving the information that was

available to them. Another similarity is that COVID hit can entities a bit like HIV did, with many people falling ill around the same time, and so that creates this huge cohort that is able to mobilize together all at once. But and I think as a result also the pandemic was in the news, so we got a lot of

media attention. So my hope is that people who are outside of these kind of health justice communities or patient led communities are recognizing the importance of patient's voices, not just as like a curious human interest story to illustrate, you know, some essay, but also as experts on their own lived experience. And I think that's something we learned from HIV AIDS, and I hope we're learning it again. Here you enter another long hole has had a hard

time being taken seriously. At the start, A big problem was getting tested. It was difficult to access one and therefore to prove that you had had the virus. People were showing up and saying, I have these symptoms, but they were being asked if they had a COVID test and they didn't, and so they were being told that their symptoms were anxiety or cold or some thing else. There was also the way that the virus was being discussed and who it was affecting. At the start, people

thought those most at risk were older men. Some ways, it was framed as a disease that was primarily affecting older men. Right, not long COVID, but COVID nineteen itself. At the beginning of the pandemic, I remember even having conversation with my own father. I'm saying, I should I be afraid of this, and him saying, no, you don't need to be scared of it. If anyone should be scared of it's me because I'm an old man. Basically.

Although many men who did get seriously are still suffering the effects of COVID a year or more later, the data is showing that it's women, many of whom are in their forties, who are disproportionately affected by long COVID. Among long haulers, females out number males by four to one. And I think absolutely it's very easy to kind of say all these young women are making up their symptoms, or it's you know, mental health issues, or they just

need to get over it. And I think that probably that's something that wouldn't be said as much if this was something that was disproportionately impact sing men. And I've seen some of the COVID advocates, you know, long COVID advocates, will actually use the fact that long COVID has been tied to a rectile dysfunction to try and get men

to care about it. Another reason long haulers weren't being taken seriously initially was because the non respiratory symptoms, things like brain fog, just weren't featuring in the medical literature.

I think that's when we started to hear more and more of these stories of people being told it was in their heads, or that it was something else, or even that they just couldn't be treated as a long COVID patient because they didn't have that test and the doctor didn't know how else to explain what was going on with them. The owner knows the frustration of being dismissed my doctors, she says. Hives and rashes start to

appear shortly after her infection in the spring. The only way to describe it at the time, I said, it's as if every skin issue I've ever had in my entire life is coming back to just say hello. She was also extremely exhausted and had gastro intestinal issues. If you under asked the doctor if they could be linked to COVID, and every time, you know, she was like, it could be, it could not. I'm not really sure. I'll try to ask around. In Juna full three months

after Fiona got COVID, she saw some improvement. I was able to start doing a very light yoga and not feeling like it was completely exhausting me. And then I started to increase the amount that I was walking, you know, And this was this was again, after feeling relief and after feeling more energized, my gi symptoms went away mostly, I would say, but Fionna says her recovery during the

summer only lasted so long. And then I realized that every time that I got my menstrual period, I was having what I was referring to as a mini COVID. So a lot of the symptoms of COVID were coming back. I was having the fatigue and the migraines very intensely in the exact same way I had them before, but I was also getting flu like symptoms. I would have a running note and a sore throat. So once a month,

Fiona relives her symptoms, they come rushing back. Around this time, Body Politic is still not getting clear answers from the medical establishment about long COVID. Fiuna finds nothing on it from the Centers for Disease Control and Prevention, and she

says clinicians still lack answers on how to help. As an alternative, the group hosts online conversations with people from different health related backgrounds, like nurses and even yoga teachers using Slack, a messaging app, and sometimes it was researchers or folks that were working in healthcare, but a lot of the time they just had kind of questions, what are you seeing that sort of thing. Then Body Politic hears from a neuroscientist mount Sinai he wants to participate

in the conversation. Fionaces. This was a huge shift. This was the first time that we actually had a healthcare professional come into the group and answer questions about an illness that, frankly, no other healthcare professional was willing to answer questions about It was the first time that I recall seeing people in the group having a positive experience after interacting with a clinician Fionaces. It was at this point that Buddy Politic begins to gain momentum. She says

there were two reasons for this. The first was that New Yorkers are starting to leave their homes more and we're able to get in person medical care. So I think that providers were for the first time starting to see people show up in large numbers with long COVID because a lot of these patients had been trying to manage their own symptoms at home during March and April

and May, and by June. You know, I know, just kind of from the interviews I've done with patients who got sick in the first way of New York City, a lot of those patients were coming to terms with the fact that they hadn't gotten better and starting to seek real medical care for that. The second reason momentum is building is the amount of media attention. The group is generating enough buzz that even medical institutions start to listen. One important body that was starting to pay attention was

the National Institutes of Health. We became aware of the problem probably in the late spring of alter. Chorashats is the director of the National Institute of Neurological Disorders and Stroke. He's also a co director of a team that the nih assembled to study the causes of long COVID and to figure out how to treat and prevent it. Walter says that by mid twenty the CDC and groups in Europe had accumulated evidence that supported the data Body Politic

had gathered two months before then. We talked to Congress in the summer. Was Congress became worried by the reports that we occurring in the newspaper. Is we had been working on the issue throughout the summer of trying to understand it. Congress. That's aside one point one five billion dollars over four years for the research. It's motivated in

large part by the emerging data. In July, the CDC publishes the results of a multi state telephone survey of people who have tested positive for COVID at least two to three weeks earlier. They showed that thirty of people were not better at three weeks, and compare that the influenza wherein to be of people would be better. So we knew right from there that that that this is a virus that has an significant impact on longer term recovery.

And now we know that people are out six seven months and haven't recovered by Politic was nimble and well connected and that enabled the group to gather an analyzed server data fast. In doing so, it was one step ahead of these official government organizations. Now the conversation of a long COVID has changed and researchers have started looking for answers. Fionna has found summer self like what made a difference with her own long COVID symptoms. She says

things started to turn around in March this year. I was able to get vaccinated and I had a unique experience in that the vaccine pretty much got rid of my menstrual issues entirely. She noticed a difference after the first shot. After I got the second one, that was when I was like, Okay, don't really see what's going to happen here, um, And the next cycle it was

it was much much better. UM. I had actually I had very severe cramps, which is a side effect of the vaccine that some people who menstruate have experienced um but I was like jumping around. I was so excited that I was having a normal period symptom. I was like, perhaps are terrible, but at least people understand that they're associated with menstrual periods, whereas a running nose and you know, headaches is not something that everyone understands is affiliated with that.

And after that it was it was, you know, much much better. This is a unique moment. Long COVID is a brand new disease and we're learning how it works in real time. This means it's harder to find factual information. We're still learning about the effects of COVID vaccination on long haulers and menstruation and strung changes after immunization have been reported, and an editorial in the British Medical Journeal b MJ in September said a link is plausible and

should be investigated. It's an example of the kind of phenomena the pandemic is throwing up once we need to be open minded about if you only recently published a guide to help the media report on long COVID. It includes tips on telling diverse patient stories and highlighting different manifestations. Part of what I'm trying to interrogate there is like, is health reporting in the way that we've done it before, did it work during this pandemic? And are there things

that we need to reinvent or think critically about? And what do you do when there's a novel illness and the people who are supposed to be experts all the time actually have less knowledge than maybe people who have no medical expertise. This observation struck a call with me too. I had almost blind faith and trusted health officials, but when a new disease emerges, the truth is we're all learning together, patients, medical authorities, and the media. No one

group has a monopoly on the facts. How do you weigh those two opinions and balance them or give credibility where you need to? Um So, I just hope that there will be more of an engagement with patients beyond kind of this here's the human side very briefly and then pulling back to the experts. I hope that we will continue to treat patients as at experts. Since the summer last year, things have changed with body politics. Fiona is being given an opportunity to provide health experts with

valuable insights into long COVID. We have been in regular contact with the CDC since Biden's inauguration, UM a little bit before that, but things really were able to get going then. We were meeting with them regularly to kind of fill them in on what was just going on, what we were seeing with patients. We've also provided UM feedback UM pretty significant edits and suggestions to their clinical guidance, which they published recently their Interim Clinical Guidance. The group

also provides feedback to health authorities in the UK. Fiona and another group member admit with the World Health Organization the NIH, as well as other international advocates. And I also recently presented to the potus UH COVID nineteen Health Equity Task Force, So that's the President's Health Equity Task Force on COVID nineteen. Body Politic was there to talk about long COVID along with a couple of other organizations. It's a limeline. Fiona is both humbled and amused by.

It's been sort of shocking. I was, you know, not the best science student in high school. Now people are reaching out to me, you know, it's it's it's funny I make that joke sometimes that like my eighth grade science teacher would be like, this person has no credibility.

Between body politics and patient led research collaborative, I feel like we're in touch with almost every researcher or clinician who is studying or treating along COVID, and that's been amazing because you get to see this kind of inside view and then obviously they are incorporating more of the patient's perspective, which is really important. But the advocacy is hard work and a challenge to keep up, especially for Longhoulders. I feel like body politic has a pretty great seat

at the table right now. To be honest, I think we're all hoping that, you know, we can just continue trucking along to keep that seat, because frankly, most of this work is not paid and we are people. You know, I'm not battling debilitating health issues every day, but many many others are. I actually saw the other day there was a conversation happening on social media just about how

do you sustain this work and not burn out? And so I think that's that's one of the questions right now as debate moves to opening up economies and learning to live with COVID and people learn for pre COVID normalcy. Fiona says it's critical that policies acknowledge the risks of long COVID, which is a threat even for those who

are being fully vaccinated. We've been at least one, if not many more steps behind throughout this whole pandemic, and so I think all of us who have dealt with this on a personal level are kind of screaming, Okay, look one step ahead. Look at all the people who already have long COVID, Look at all the people were going to get it. What are you gonna do for us earlier this past summer? You want to spend a

weekend on Long Island. She recalls going into a grocery store wearing a face mask and the glass you received, and someone even asked, us, oh, did you not get the shot, you know? And we're like, no, we got it. We're still wearing masks. A false sense of optimism has been a hallmark of this pandemic epidemic. Peaks and troughs have brought a whiplash of panic, followed by relief that

the worst is behind us. But COVID nineteen is far from over and Fiona says she's concerned how all play out in terms of the risks for long COVID, even when people talk about it will eventually become, you know,

a mild illness. I hope that happens, but I also don't know what that means for COVID because many of these people who got it got an initially mild case, right, So I think just it's hard to envision the future when no one is accounting for the present or the past, honestly, so, the medical establishment finally acknowledged that long COVID is real, in large part thanks to the work of Fiona's and other patient led groups, but that only highlights are bigger challenge,

what's causing it and how can you stomp it? Next week on Breakthrough, doctors search for answers in the bodies of COVID victims. We set up a twenty four hour call schedule where I might hear about these cases. At two o'clock in the morning, communicate with our amazing admissions department, who would facilitate our contract funeral home going out in the middle of the night bringing bodies here so that my team would be suited up. At nine o'clock in

the morning. This episode of Prognosis Breakthrough was written and reported by me Jason gale So for Foreheads is our senior producer. Carl Kevin Robinson Jr. Is our associate producer. Theme music was composed and performed by Hannes Brown. Rich Sin is our editor. Francesca Levi, the head of Bloomberg Podcasts. Be sure to subscribe if you haven't already, and if you like this episode, please leave us a review. It helps outlet's find out about the show. Thanks for listening.