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Months After Contracting Virus, They Suffer Crippling Effects Of 'Long COVID'

MICHEL MARTIN, HOST:

For many Americans, the end of the pandemic feels just within reach. Millions have been vaccinated, and cases are declining nationwide, so it's easy to imagine a return to normal life. But for so-called long COVID patients, there doesn't seem to be a return to life as they knew it, at least not yet. These patients, many of whom are young with no underlying health conditions, contracted COVID and simply never got better. Months after getting sick, some still struggle with persistent fevers, brain fog, extreme fatigue and, at times, with skepticism from the medical community.

Many have turned online to find other people going through the same experience. That's how Hannah Davis and Fiona Lowenstein met. They are both long COVID patients and met last year after Lowenstein wrote about her experience. Lowenstein formed a support and advocacy group for those living with long COVID, and Davis is a founding member of a Patient-Led Research Collaborative. They recently co-wrote an op-ed for The New York Times describing what they say could be one of the largest mass disabling events in modern history.

And Hannah Davis is with us now. Hannah, welcome.

HANNAH DAVIS: Thank you so much.

MARTIN: And Fiona Lowenstein is also with us. Welcome to you as well.

FIONA LOWENSTEIN: Thank you for having me.

MARTIN: So I'm just going to start with your personal experiences with long COVID. I mean, many people have heard about it in the abstract, but they might not have met anybody who's been living with this. So I'm just going to ask each of you to tell us about your experiences. I don't know. Fiona, do you want to start?

LOWENSTEIN: Yeah, sure. So I got sick very early on in kind of the pandemic's trajectory of hitting the United States. I live in New York City, and my first symptoms were on Friday, March 13. I believe I was infected by a friend who came over on March 10. And then a few days later, I developed a headache and a fever.

For my first couple of days, those were the main symptoms I had. I had a little bit of cough. I had a fever. But, you know, as a young person - I was 26 at the time. I didn't have any serious pre-existing health conditions. I assumed that I would just be able to ride it out at home.

And then it became clear that that was not going to be the case. I started to develop pretty severe shortness of breath. By March 16, I was too short of breath to, you know, walk, to talk. So I went to the ER on the 16th. I spent the night there. I was hospitalized the following day. And that's the reason that I was able to get a COVID test. I had tried previously calling, you know, everywhere in the city, and they weren't giving tests to people unless they had been exposed to someone who themselves had a confirmed test, so that was unhelpful.

And then I spent just a couple of days in the hospital on supplemental oxygen. And then I was released after my, you know, shortness of breath seemed to be getting better and my fever was gone. And I got home and kind of assumed, OK, it might take - you know, I might be a little fatigued but assumed that recovery would be more or less around the corner. And then I started developing new symptoms.

So the first issues were intense GI issues. And then there was the loss of smell. I started to have hives and rashes. I started to get a runny nose and a sinus pain and intense headaches that I think now were migraines. I had eye pain, light sensitivity. Over the course of the next, you know, two months, it was just these cycling symptoms that would come and go, and new ones would pop up. It was unlike anything that I had experienced before and totally unlike what I imagined.

MARTIN: And so here we are a year later. Are you still having these things?

LOWENSTEIN: So I'm one of the lucky ones in the sense that I have made an almost full recovery. I do still have some long-term symptoms. The most notable is that my menstrual periods have changed entirely, and they're very debilitating now. And I have a return of flu-like symptoms as well as fatigue and migraines and sometimes nausea and vomiting. And that's something I never experienced before COVID, but it is something that we see with a lot of long COVID patients and survivors who menstruate.

MARTIN: Wow.

LOWENSTEIN: And I also have some circulation issues. And my skin is not the same. It's very sensitive. I have new, you know, skin allergies.

MARTIN: And none of that before?

LOWENSTEIN: None of that before, no. No.

MARTIN: That's crazy. OK. I'm sure there's yet more to say, but Hannah, what about you?

DAVIS: So I got sick also in New York City on March 25. My first symptom was actually that I couldn't read a text message. I kind of thought I was tired. But then an hour later, I took my temperature and realized I had a fever.

And for me, I had actually a primarily neurological manifestation of COVID. I had extremely intense brain fog. I had really bad memory loss, which I'm still struggling with today. You know, I forgot my partner's name. I just forgot people in my life. I forgot to look both ways when I was crossing the street. I almost got hit by cars multiple times. I, like, forgot how to use the bus...

MARTIN: Wow.

DAVIS: ...As well as kind of a nonstop low-grade fever just for months, something that continues to happen and come back. I have been diagnosed with post-viral dysautonomia, which includes a very high heart rate. Whenever I stand, my heart rate can go up to 140, 150 just by standing up, which makes activity difficult. And I've had, you know, fatigue, pain in my joints, sensitivity to light and noise, really bad tinnitus, insomnia, temperature regulation. I've had phantom smells, like smelling smoke and smelling, you know, meat. I've had a complete loss of feeling in my arms and various limbs. I've had kind of ongoing tremors and very, very severe headaches that thankfully have lessened in the past couple of months.

MARTIN: Wow.

DAVIS: But...

MARTIN: And none of that before COVID?

DAVIS: None of that before COVID, no. That's the thing I think people don't understand, is, like, it's a very severe set of symptoms to have all of a sudden.

MARTIN: So, Hannah, you were - we were saying earlier that you're a founding member of the Patient-Led Research Collaborative, which is a self-organized group of long COVID patients. Do you have a sense of how widespread this could be?

DAVIS: Yes. There are a couple of small longitudinal studies. And one thing Fiona and I have been talking about alongside other patients like Nisreen Alwan in the U.K. have - are - you know, we need to really count long COVID at a much larger scale. But the longitudinal studies that have been done point to numbers around 30%.

MARTIN: Which is one of the reasons you say this could be one of the largest mass disabling events in history because there could be so many people affected by this. And I'm thinking the effects of this might be somewhat hidden because a lot of people still haven't gone back to offices.

But, you know, one of the things you wrote about in the piece - you said one of the biggest issues has been getting doctors and family and friends to take these symptoms seriously. Fiona, why don't you take this one? Why do you think that is?

LOWENSTEIN: Well, I think it's something that's actually been going on for people with chronic illnesses and autoimmune diseases and, you know, mysterious-seeming illnesses for a very long time. But I think the fact that COVID itself is new and information is still emerging on it, and initial media coverage really focused on, you know, the idea that there were really only two ways that this virus could manifest, that you would either have a mild case that you would ride out at home like a common flu, or that you would get really sick, and it would be potentially fatal, and you would have to be put on a ventilator.

But the reality is that a lot of patients experience something in between. And we also have seen a lot of the early studies that focused on long COVID focused on only hospitalized patients. So there was also this mistaken understanding for a long time that it was only those patients who would have long-term symptoms. And that's part of the reason as well that I think patients are experienced gaslighting from clinicians and employers and family and friends.

MARTIN: Well, also - something you said earlier I want to go back to - you said that one - another issue is the fact that some early COVID patients were never able to get tested.

LOWENSTEIN: Yeah.

MARTIN: How do you think this feeds into this whole question of not being believed?

LOWENSTEIN: Well, there's so many issues there. I mean, to start with, even when we're talking about prevalence, we have all of these patients - you know, first wavers - who were not able to access testing because it just - testing capacity was limited, and we were being told to stay home. And so for those patients, they don't have on their record that they had a COVID infection.

And by the time, you know, things settled down in the area that they were able to access care, or by the time they realized they really weren't getting better, it was hard to get clinicians to understand that this was a result of an earlier viral infection because we've heard lots of stories from patients who are saying, I went to a doctor, and I told them I have, you know, this, that and the other symptom and that I had COVID earlier. And they said, OK. Well, where's your positive PCR test from having COVID?

MARTIN: You make the point in your piece that this health crisis cannot be considered over when people just stop being infected. So just in the time that we have left, could you each just give me a sense of what you think people should be thinking about, about this issue? Hannah, do want to take this first?

DAVIS: Sure. I mean, there are a lot of needs. I think, you know, first and foremost, we need an understanding of long COVID. And we need to be counting it, and we need to be incorporating it into policy decisions. And, you know, in one of our surveys we did recently, we found that basically only 7% had recovered. And people who had not recovered in the first three months continued to experience an average of 14 symptoms in month seven.

MARTIN: Fiona.

LOWENSTEIN: Yeah. So the first thing I would say is, I think it's very important that the general population understand that a mild - an initially mild case of COVID is not necessarily a non-impactful case of COVID. Of course, you know, in terms of widespread awareness raising, we need employers to understand long COVID because the disability benefits system is really not working for a lot of long COVID patients right now because they need to prove 12 months of impaired ability to work. And most of us are only just coming up on that 12-month point right now.

I think another conversation that's not happening is looking at long COVID in terms of racial disparities. We have seen - because we've been tracking rates of infections and hospitalizations and deaths, we've seen the disproportionate impact of COVID-19 on Black and Latinx and Indigenous communities. But because we are not tracking long COVID, we really have no idea of the impact in these communities.

And then finally, I would just say we need widespread clinician education on long COVID. But I think we can all have some part in helping with that sort of clinician education by just asking about it when we're going to the doctor for our own symptoms.

MARTIN: Fiona Lowenstein is the founder of the Body Politic COVID-19 support group, and Hannah Davis is a founding member of Body Politic's research partner, the Patient-Led Research Collaborative. And as we said, they co-wrote an op-ed in The New York Times describing the experience of being long COVID patients.

Fiona Lowenstein, Hannah Davis, thank you both so much for joining us. And, gosh, I wish you the best. Hang in there.

LOWENSTEIN: Thank you. You, too.

DAVIS: Thank you so much.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.