Michel Martin, Host:
For many Americans, the end of the pandemic feels just within reach. With millions of people vaccinated and the number of cases declining nationwide, it’s easy to imagine returning to normal life. But for so-called long COVID patients, at least still, they knew it, so it doesn’t seem to come back to life. Many of these patients were young, unhealthy, infected with COVID and simply did not improve. Even months after getting sick, some people still suffer from persistent fever, brain fog, extreme fatigue, and sometimes skepticism from the medical community.
Many went online and found others with the same experience. That’s how Hannah Jeter and Fiona Lowenstein met. They are both long COVID patients and met last year after Lowenstein wrote about her experience. Lowenstein has formed a support and advocacy group for people with long COVIDs, and Davis is a founding member of the Patient-Led Research Collaborative. They recently co-authored a New York Times editorial, explaining that what they say could be one of the largest disability events in modern history.
And Hannah Jeter is with us now. Welcome, Hannah.
Hannah Jeter: Thank you.
Martin: And Fiona Lowenstein is with us. Welcome.
FIONA LOWENSTEIN: Thank you.
Martin: So I’ll start with your long personal experience with COVID. That is, many have heard about it in the summary, but they may not have met anyone who lives with it. So I will ask each of you to talk about your experience. I do not know. Fiona, do you want to get started?
LOWENSTEIN: Yes, sure. So, very early on, I got sick with something like a pandemic hitting the United States. I live in New York City and my first symptom was Friday the 13th of March. I think I got infected with a friend who came on March 10th. And a few days later, I had a headache and a fever.
For my first few days, they were the main symptoms I had. I have a little cough. I had a fever. But as you know, when I was young, I was 26 at the time. I didn’t have a serious existing health condition. I thought I could only ride at home.
And it became clear that it wasn’t. I started to develop quite severe shortness of breath. By March 16th, I was too short to walk or talk. So I went to the ER on the 16th. I spent the night there. I was hospitalized the next day. And that’s why I was able to get a COVID test. I’ve called everywhere in the city before, but it didn’t help because they didn’t test people unless they were exposed to the person who checked the test themselves.
Then I spent just a few days in the hospital for oxygenation. And I seemed to be short of breath, and after the fever was gone, I was released. And I went home and made some assumptions, ok, it might take-you know, I may be a little tired, but the recovery is more or less horny I thought it was just around the corner. And I started to develop new symptoms.
Therefore, the first problem was a severe gastrointestinal problem. And there was a loss of odor. Hives and rashes have begun to appear. I started getting runny nose, sinus pain, and severe headaches, but now I think I have migraines. I had eye pain and photosensitivity. Over the next two months, these cycling symptoms went on and off, and new ones appeared. It was something I had never experienced before and was quite different from what I had imagined.
Martin: So here we are a year later. Do you still have these stuff?
LOWENSTEIN: So I’m one of the lucky ones in the sense that I’ve recovered almost completely. I still have some long-term symptoms. Most notably, my period has changed completely and is now very debilitating. And flu-like symptoms, malaise, migraine, and sometimes nausea and vomiting recur. And that’s something I’ve never experienced before COVID, which is what we see in many long-term COVID patients and survivors who are menstruating.
LOWENSTEIN: And I also have some circulation problems. And my skin is not the same. It’s very sensitive. I have a new, skin allergy you know.
Martin: Until then?
LOWENSTEIN: I didn’t have any of them before. number.
Martin: That’s crazy. OK. I have more to say, Hannah, how about you?
Davis: So I got sick in New York City on March 25th. My first symptom was that I couldn’t actually read the text message. I thought I was a little tired. However, one hour later, when I measured my body temperature, I noticed that I had a fever.
And to me, I actually showed primarily the neurological symptoms of COVID. There was a very intense brain fog. I experienced a really terrible amnesia, which I still struggle with today. As you know, I forgot the name of my partner. I forgot a person in my life. As I was crossing the street, I forgot to look in both directions. I was almost run over by a car many times. I forgot how to use the bus …
Davis: … something continues to happen and comes back, as well as a non-stop low-grade fever for just a few months. I was diagnosed with viral autonomic imbalance with a very high heart rate. Whenever you are standing, your heart rate can reach 140 or 150 just by standing, which makes your activity difficult. And I experienced fatigue, joint pain, hypersensitivity to light and noise, really bad tinnitus, insomnia, and thermoregulation. There was a phantom smell, such as the smell of smoke and the smell of meat. I completely lost the sensation in my arms and limbs. I experienced some sort of continuous tremor and a very bad headache, but thankfully it has alleviated in the last few months.
Davis: But …
Martin: And none of that before COVID?
Davis: Before COVID, none of them were there. That’s what people don’t think they understand. For example, what happens suddenly is a very serious set of symptoms.
Martin: So, Hannah, you-earlier you said you were a founding member of Patient-Led Research Collaborative, a long self-organizing group of COVID patients. Do you feel how widespread this is?
Davis: Yes. There are some small longitudinal studies. And one of the things Fiona and I’m talking about with other patients like Neslin Alan (ph) in the UK, as you know, we have a really long COVID much bigger. Must be counted on a scale. However, longitudinal studies conducted show about 30% of the numbers.
Martin: This is one of the reasons you say this could be one of the biggest disability events in history, as it can have so many people affected. .. And since many people haven’t returned to the office yet, I suspect this effect is a little hidden.
But as you know, one of the things I wrote in this article was that one of the biggest problems was getting doctors, family and friends to take these symptoms seriously. Fiona, why don’t you take this? Why do you think?
LOWENSTEIN: Well, I think it’s actually happening to people with chronic, autoimmune, and, as you know, mysterious illnesses for a very long time. However, the fact that COVID itself is new and information is still available, and the first media coverage focused on the idea that the virus could actually appear in only two ways. I think it was. Mild cases that require a ventilator to go home like a normal flu, or to become really ill and potentially fatal.
But in reality, many patients experience something in the meantime. There were also many early studies focusing on long COVIDs that focused only on inpatients. Therefore, there has long been a misunderstanding that only patients have long-term symptoms. And that’s part of the reason I think patients are experiencing gas lamps from clinicians, employers, family and friends.
Martin: Well, also-what you wanted to say before-you one-another problem is the fact that some early COVID patients could never be tested.
Martin: How do you think this affects the whole question of being incredible?
LOWENSTEIN: Well, there are so many problems there. That is, in the first place, all of these patients are, even when talking about prevalence-the first shake you know-they couldn’t access the test just for that-testing ability Was limited, and we were at home as we were told. And for those patients, they do not have in their records that they had a COVID infection.
And, as you know, by the time things settled down in the area where they had access to care or they realized they weren’t really getting better, the clinician told them that this was the result. Previous viral infections that were difficult to understand have heard a lot of stories from patients that I went to the doctor, so I had them this, that, and other symptoms, and I used to Said he had a COVID. And they said, OK. Now, where is your positive PCR test from having a COVID?
Martin: You point out in your work that people can’t take this health crisis into account just by quitting the infection. So can you give me a sense of what people think about this issue, just as we left? Hannah, do you want to take this first?
Davis: Of course. That is, there are many needs. First and foremost, I think you need to understand the long COVID. And you need to count it and incorporate it into your policy decisions. Also, one of the recent surveys found that basically only 7% was recovered. And those who did not recover in the first three months continued to experience an average of 14 symptoms in the seventh month.
LOWENSTEIN: Yeah. So, first of all, I think it’s very important to understand that the general public is mild-a case of initially mild COVID is not necessarily a case of unaffected COVID. Of course, from a broader awareness perspective, employers need to understand the long COVID. This is because the disability allowance system does not actually work for many long-term COVID patients today because it requires proof of a 12-month disability to work. .. And most of us are just approaching that 12-month point.
I think another conversation that hasn’t happened is looking at a long COVID in terms of racial disparity. Tracking infectious disease, hospitalization, and mortality rates shows that COVID-19 has a disproportionate impact on black, Latin, and indigenous communities. However, we haven’t tracked long COVIDs, so we have no idea what the impact on these communities will be.
And finally, I think we need extensive clinician education on long COVID. But just asking about our own symptoms when we go to the doctor, I think we can all play a role in supporting that kind of clinician education.
MARTIN: Fiona Lowenstein is the founder of the BodyPolitic COVID-19 Support Group, and Hannah Davis is a founding member of the BodyPolitic research partner Patient-Led Research Collaborative. And, as we said, they co-authored an editorial explaining the experience of being a long-time COVID patient at the New York Times.
Fiona Lowenstein, Hannah Jeter, thank you for joining us. And, well, I wish you the best. Go for it.
LOWENSTEIN: Thank you. you too.
Davis: Thank you.
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