They’ve become known as "long haulers" -- people who’ve been infected with COVID-19 but can’t seem to rid their bodies of its effects months later. Their symptoms run the gamut, from shortness of breath to heart palpitations to extreme fatigue. And this mystery has the medical community scrambling. Stephanie Sy reports.
Their symptoms run the gamut, from shortness of breath, to heart palpitations, to extreme fatigue. They have become known as long-haulers, people who've been infected with COVID-19, but can't seem to rid their bodies of its effects months later.
As the number of cases keeps climbing in surges around the country, it means more and more people will be struggling with similar problems. This medical mystery has the medical community scrambling.
Stephanie Sy has this report.
This is Greg Rosen trying to go for a short run a few weeks ago.
I just had to stop because I — I couldn't breathe.
This was Greg Rosen before COVID, sprinting to finish lines in marathons, road races and relays across the country.
Even the other day, the act of folding towels left me breathless.
COVID has left me with some nasty migraines.
Baltimore middle school teacher Chimere Smith has spent the better part of the last nine months in bed.
It felt like a ghost or a monster had started to inhabit my body.
And New Jersey father of three and guidance counselor Dane Tabano has terrible brain fog.
When it gets bad, I get like this buzzing and ringing in my ears, and my short-term memory is really poor.
And he's also struggled with tachycardia, elevated heart rate, since July. That makes it tough for the former University of Michigan wrestler to run his wrestling school.
If I actually stood in front of an athlete now and tried to work out with them in a wrestling practice. I don't think I could sustain more than five to 10 minutes at this point. But back when I was in the worst of it, I probably wouldn't even do two or three minutes.
These three previously healthy individuals are in their 20s, 30s and 40s, and are now suffering long-haul COVID.
For me, my experience has been intense, acute illness, followed by continued acute illness for months on end. So, it's been about six months now that I have been sick.
Are you somebody that got sick a lot before?
No. I have no underlying health conditions.
I had no idea that, in the course of nine months, that I would lose my vision or sometimes lose my ability to move my left arm and left leg.
By best estimates, nearly 23 million Americans are known to have had COVID-19. And, of those, more than 375,000 have died. It's unknown how many of those 22 million others may suffer long-haul effects down the road.
There were many members of our group who were a couple of months into COVID and were not recovering and, in fact, were sort of spiraling down and getting worse.
We first met Diana Berrent last spring, after she founded Survivor Corps, an online community for COVID survivors like herself that's now grown to over 125,000 members.
I am fully clear the virus.
Back then, she didn't think she'd be calling herself a long-hauler.
I had a good six, eight weeks where I felt like I was really much better. And then, over the summer, I had a complete symptomatic relapse.
I was having tremendous gastrointestinal problems. I lost so much weight. I could not put it back on no matter what I did. I was diagnosed with COVID-onset glaucoma at the beginning of September.
And she certainly didn't think her 12-year-old son, Spencer, who had a mild case of COVID in March, was at risk.
He was sitting on the couch watching television and one of his teeth, his front adult teeth, spontaneously fell out, with no blood loss.
I immediately posted to Survivor Corps and said, has this happened to anybody? And the answers started flooding in of so many people experiencing spontaneous loss, with no blood loss, cracked teeth, all kinds of dental issues.
Dr. William Li:
There are tens of millions of people who are COVID survivors who may be carrying this vascular damage in their bodies with them going forward. And we can't leave those people behind.
Doctor William Li is a vascular biologist, studying the 60,000-mile network of blood vessels in each of us that connects every organ in every cell in our bodies, supplying them with nutrients.
We think this long hauler syndrome has a vascular component, which I study, an autoimmune component, inflammation, and also a neurological component. So, this seems to be the three legs of the stool.
In March, he started studying lung tissue from people who died of COVID.
That that beautiful lace-like architecture has been completely destroyed.
More recently, he's been looking at what COVID can do to the heart.
And on the right hand side, you can see what happens in a COVID patient. When the virus infects the blood vessels in the heart, it completely destroys that normal architecture. This is sort of like a — you know, I call this a kind of scared-straight image.
It's like — it reminds me of the image you see in the back of a cigarette box.
Doctor Li has also been able to use special imaging software to see more than a C.T. Scan can capture.
Acute small blood vessels are really wiped out. This is living patients, long-term COVID, better, but not fully recovered.
And, by the way, this patient's C.T. scan of their chest was read by the radiologist completely normal. This is not completely normal. And this particular patient went to get a scan because she was still short of breath.
So, how is it the average person who says — goes and gets a C.T. Scan and doesn't have you, Dr. Li, supposed to know whether they have this long-term damage?
This is what I'm working on.
I mean, literally, this is like a new page of the textbook of medicine, because we need to get the word out that this is the kind of research that is being done to give people an answer that what they're feeling is, in fact, real.
Dr Anthony Fauci:
This is a phenomenon that is really quite real and quite extensive.
At a two-day virtual conference in early December run by the National Institutes of Health, one thing was clear: Doctors have more questions than answers about this medical mystery.
There's definitely a lot that's still unknown.
We are flying a little bit blind here. We're not exactly sure what we're looking for.
Wondering how much more of this I will have to go through.
Chimere Smith has been through a barrage of tests, like this EEG, and often been told it's all in her head.
For the better part of nine months, I spent time fighting for my life by myself and trying to get doctors to believe me. And it's been a harrowing journey.
I do not want another Black woman to go into a hospital with these symptoms that go on and on and on and seem so never-ending, and to be told that she's too smart to know about her body, or that she's too aggressive to take action on what happens to her health. I don't want that for anybody.
For Greg Rosen, months of debilitating symptoms without a clear diagnosis, prognosis, or even an idea of what lasting damage there is has been traumatizing.
These are the medicines I'm taking.
I feel like I'm fighting a battle against my body, but I'm also fighting a battle against the world right now. I think this is one of those things that, even if I physically get well enough to feel more like myself, I think the emotional toll this experience has left on me will be something I never forget.
This is a situation where doctors need to listen to patients who are bringing their symptoms to teach us, as a medical community, what's actually happening. It's the exact opposite of what normally happens, where doctors are telling the patients.
Chimere Smith's persistence to find answers is paying off. A new diet and medication regimen is making her feel a little better.
On my darkest days in the dark, no light in my room at all, when I couldn't even really see anything, I could not imagine a future for myself. And now I actually can. And I'm happy about that.
Well, this is a cliche, too, but it sounds like it made you stronger.
Don't have me crying over here. Yes, absolutely.
For the "PBS NewsHour," I'm Stephanie Sy.
Such important reporting. Thank you, Stephanie.
And I know we're going to continue to follow this. What a story.
Watch the Full Episode
Stephanie Sy is a PBS NewsHour correspondent and serves as anchor of PBS NewsHour West. Throughout her career, she served in anchor and correspondent capacities for ABC News, Al Jazeera America, CBSN, CNN International, and PBS NewsHour Weekend. Prior to joining NewsHour, she was with Yahoo News where she anchored coverage of the 2018 Midterm Elections and reported from Donald Trump’s victory party on Election Day 2016.
Lorna Baldwin is an Emmy and Peabody award winning producer at the PBS NewsHour. In her two decades at the NewsHour, Baldwin has crisscrossed the US reporting on issues ranging from the water crisis in Flint, Michigan to tsunami preparedness in the Pacific Northwest to the politics of poverty on the campaign trail in North Carolina. Farther afield, Baldwin reported on the problem of sea turtle nest poaching in Costa Rica, the distinctive architecture of Rotterdam, the Netherlands and world renowned landscape artist, Piet Oudolf.
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