Medical community scrambles to understand COVID-19 ‘long haulers’

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• Judy Woodruff:

  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.

• Stephanie Sy:

  This is Greg Rosen trying to go for a short run a few weeks ago.

• Greg Rosen:

  I just had to stop because I — I couldn't breathe.

• Stephanie Sy:

  This was Greg Rosen before COVID, sprinting to finish lines in marathons, road races and relays across the country.

• Greg Rosen:

  Even the other day, the act of folding towels left me breathless.

• Chimere Smith:

  COVID has left me with some nasty migraines.

• Stephanie Sy:

  Baltimore middle school teacher Chimere Smith has spent the better part of the last nine months in bed.

• Chimere Smith:

  It felt like a ghost or a monster had started to inhabit my body.

• Stephanie Sy:

  And New Jersey father of three and guidance counselor Dane Tabano has terrible brain fog.

• Dane Tabano:

  When it gets bad, I get like this buzzing and ringing in my ears, and my short-term memory is really poor.

• Stephanie Sy:

  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.

• Dane Tabano:

  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.

• Stephanie Sy:

  These three previously healthy individuals are in their 20s, 30s and 40s, and are now suffering long-haul COVID.

• Greg Rosen:

  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.

• Stephanie Sy:

  Are you somebody that got sick a lot before?

• Greg Rosen:

  No. I have no underlying health conditions.

• Chimere Smith:

  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.

• Stephanie Sy:

  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.

• Diana Berrent:

  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.

• Stephanie Sy:

  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.

• Diana Berrent:

  I am fully clear the virus.

• Stephanie Sy:

  Back then, she didn't think she'd be calling herself a long-hauler.

• Diana Berrent:

  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.

• Stephanie Sy:

  And she certainly didn't think her 12-year-old son, Spencer, who had a mild case of COVID in March, was at risk.

• Diana Berrent:

  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.

• Stephanie Sy:

  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.

• William Li:

  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.

• Stephanie Sy:

  In March, he started studying lung tissue from people who died of COVID.

• William Li:

  That that beautiful lace-like architecture has been completely destroyed.

• Stephanie Sy:

  More recently, he's been looking at what COVID can do to the heart.

• William Li:

  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.

• Stephanie Sy:

  It's like — it reminds me of the image you see in the back of a cigarette box.

• William Li:

  Exactly. Exactly.

• Stephanie Sy:

  Doctor Li has also been able to use special imaging software to see more than a C.T. Scan can capture.

• William Li:

  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.

• Stephanie Sy:

  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?

• William Li:

  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.

• Stephanie Sy:

  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.

• Man:

  There's definitely a lot that's still unknown.

• Man:

  We are flying a little bit blind here. We're not exactly sure what we're looking for.

• Chimere Smith:

  Wondering how much more of this I will have to go through.

• Stephanie Sy:

  Chimere Smith has been through a barrage of tests, like this EEG, and often been told it's all in her head.

• Chimere Smith:

  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.

• Stephanie Sy:

  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.

• Greg Rosen:

  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.

• William Li:

  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.

• Stephanie Sy:

  Chimere Smith's persistence to find answers is paying off. A new diet and medication regimen is making her feel a little better.

• Chimere Smith:

  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.

• Stephanie Sy:

  Well, this is a cliche, too, but it sounds like it made you stronger.

• Chimere Smith:

  Girl, yes.

  (LAUGHTER)

• Chimere Smith:

  Don't have me crying over here. Yes, absolutely.

• Stephanie Sy:

  For the "PBS NewsHour," I'm Stephanie Sy.

• Judy Woodruff:

  Such important reporting. Thank you, Stephanie.

  And I know we're going to continue to follow this. What a story.