JUANA SUMMERS, HOST:
Before the spring of 2020, Shelby Hedgecock's life revolved around fitness. She worked as a personal trainer in LA and competed in endurance races on the weekends. Then she got infected with COVID. She struggled to breathe at night. Recovery didn't come a week or two later. For months, her brain didn't get enough oxygen. She wasn't even able to read for a year and a half.
SHELBY HEDGECOCK: It was like there was a disconnect between the words and my brain.
SUMMERS: Now she doesn't leave her apartment without a medical alert button that can instantly call an ambulance.
HEDGECOCK: I've passed out in the shower before. I've passed out alone at home before.
SUMMERS: Hedgecock moved from LA back home to live with her family in Tennessee because she can't be alone.
HEDGECOCK: It's hard. I've never dealt with anything like this before COVID, and it's been life changing.
SUMMERS: She's not alone. An estimated 15 million adults in the U.S. are currently suffering from long COVID. They are no longer contagious, but health issues related to their infections stretch on and on. The severity and duration of long COVID varies. Some people do slowly recover from their symptoms, while a smaller number have debilitating and lingering health issues for many months, even years. It's not yet known why some people develop long COVID, while others don't. The health issues from long COVID are linked to a kaleidoscope of more than 200 symptoms, says Dr. Linda Geng, co-director of the Stanford Long COVID Clinic.
LINDA GENG: It is a complex, likely multi-system condition of manifestations that persist after infection, and it can be quite debilitating.
SUMMERS: Many long COVID patients feel their condition is dismissed by family members and even their doctors. Shelby Hedgecock feels lucky that she has a team of specialists helping her to slowly improve. She's met people online in long COVID groups who are unable to work.
HEDGECOCK: A lot of them have lost their life savings. You know, some are experiencing homelessness.
SUMMERS: It makes it frustrating to watch the rest of the world seemingly move on from the pandemic. Masks are largely considered a thing of the past. The federal government will end the public health emergency in May. President Biden touted the country's recovery in his State of the Union address.
(SOUNDBITE OF ARCHIVED RECORDING)
PRESIDENT JOE BIDEN: Today, COVID no longer controls our lives.
HEDGECOCK: Hearing that is extremely disappointing and infuriating. We were injured by this virus and so patients are losing hope. We feel swept under the rug.
SUMMERS: Hedgecock is worried that while researchers look for a treatment or cure, politicians will forget about people like her struggling to live a normal life. CONSIDER THIS - since the pandemic began, scientists and frustrated patients alike have been working to get to the bottom of what's behind long COVID. Now it seems one possible explanation is gaining traction. After the break, we'll hear more about those looking to solve long COVID's mystery. From NPR, I'm Juana Summers. It's Monday, April 17.
It's CONSIDER THIS FROM NPR. Before the phrase long COVID meant anything, Brent Palmer had already begun research into the condition. Palmer studies how the immune system responds to infectious diseases at the University of Colorado, so when some of his friends returned home from a ski trip in March 2020 with COVID, the opportunity was too good to pass up. He started collecting their blood. One person in particular intrigued him.
BRENT PALMER: I was up there maybe a month and a half after they had SARS-CoV-2, and she was still complaining of heart palpitations, chest pains, some difficulty breathing.
SUMMERS: Palmer was analyzing part of the immune system's arsenal known as T cells. He noticed that, unlike the others, the person who was still struggling with symptoms still had a very high percentage of these immune cells aimed at the virus in her blood.
PALMER: So I just kind of shelved that and thought, well, that's interesting.
SUMMERS: Typically, T cells reach very high levels during the acute infection, Palmer says, and over time, they drop off, so he was surprised as he began looking at the T cells of more and more long COVID patients well after they'd been infected.
PALMER: These individuals had frequencies that were a hundredfold higher, in some cases, than the individuals that didn't have any sort of persistent symptoms.
SUMMERS: Those with long COVID also had higher levels of systemic inflammation that was associated with worse lung function. It had been months since their infection, but it was as if their immune system was still fighting the virus, which raised the question...
PALMER: Even despite the fact they test negative in a nasal swab, is the virus still persisting in the lung? Is it persisting in some other organ?
SUMMERS: Many scientists studying long COVID have wondered the same thing. Maybe the virus isn't entirely gone. Maybe there are viral reservoirs hiding in the body, and as NPR's Will Stone reports, there is evidence to support the case for viral reservoirs.
WILL STONE, BYLINE: Take the findings of David Walt at Harvard Medical School. His team detected proteins from the coronavirus, mostly the spike protein, in the blood of some long COVID patients up to a year after their infection.
DAVID WALT: And the only place it could be released from is from, you know, some sort of reservoir, some source of virus that continues to spew these proteins out.
STONE: It was a relatively small study, and Walt says as they've looked at more long COVID patients, it appears only about 20% have viral proteins in their blood. But for those who do...
WALT: We think that this is, you know, to some extent, a smoking gun for the presence of, you know, a persistent, active viral infection.
STONE: Then there are all the places in the body where scientists have unearthed evidence of the virus, like in biopsies of the gut or in the stool of people who'd had COVID months earlier. Dr. Dan Chertow at the National Institutes of Health led a painstaking autopsy study of people who'd had COVID.
DAN CHERTOW: We found virus in over 30 different cell types in tissues really throughout the body.
STONE: Essentially, all the major organs, like the lungs, kidneys, liver, heart and throughout the brain.
CHERTOW: It, you know, provides definitive evidence that the virus is capable of spreading to parts all over the body, that it is capable of persisting all over the body.
STONE: In one case, they found genetic material from the virus had persisted for 200 days. And in another...
CHERTOW: In an individual that died relatively early, within two weeks of their initial illness, we were able to culture live virus in the brain.
STONE: He says you can only take so much from this study. After all, it wasn't focused on long COVID, and the people tended to be older and sicker. But Chertow says their findings do provide strong biological plausibility that viral reservoirs may play a role. So where does all of this evidence leave us in the hunt to uncover the roots of long COVID? Microbiologist Amy Proal sums it up this way.
AMY PROAL: No one thinks that every long COVID patient has the exact same thing happening, but we do think that of the research that has come out recently, that reservoir of the virus in tissue ranks at the top of what might be happening to a good number of patients.
STONE: Proal is president of the nonprofit PolyBio Research Foundation, which is working with scientists to advance this theory of viral persistence.
PROAL: Does it persist more in certain body sites over others? If it does persist in one body site, does it have a different mechanism of how it sticks around there? Like, all these nuances of how it's sticking around, we need further research on.
STONE: Mohamed Abdel-Mohsen at The Wistar Institute says scientists now need to draw a clear line from viral reservoirs to the long COVID symptoms. He says it's possible the body's immune response to the virus or parts of the virus is behind some symptoms.
MOHAMED ABDEL-MOHSEN: A chronic reaction to something could lead to immune dysfunction and inflammation. Anything happening in a long period of time can cause our immune system to be, quote, "exhausted and dysfunctional."
STONE: Now, there are many theories about what's contributing to long COVID. For example, Abdel-Mohsen wants to know if viral reservoirs in the gut are responsible for bacteria and fungi leaking into the bloodstream. Scientists are also looking at the role of autoimmunity or damaged tissue or tiny blood clots. The list goes on. Abdel-Mohsen says it's important to realize that some of these theories are not mutually exclusive.
ABDEL-MOHSEN: Each one of them could happen independently and can lead to a problem to our immune system, but it can all lead to each other.
STONE: Figuring out which treatments work for long COVID can also help untangle what's going on here. There's keen interest in using antivirals, like the COVID drug Paxlovid, because it might help extinguish any residual virus. A trial at Stanford expects to have results on that later this year. But some people aren't waiting for that data.
SCOTT LEDUC: I did see some dramatic benefit.
STONE: Scott LeDuc has dealt with long COVID since early in the pandemic. About three months ago, he found a doctor who was willing to prescribe him Paxlovid for 15 days.
LEDUC: All of a sudden, I was able to go for longer walks. You know, I'm starting to push myself a little bit. I was actually starting to introduce some light jogging.
STONE: After struggling for so long, he says it was euphoric.
LEDUC: I truly felt well, that I was almost back to my previous self.
STONE: It didn't entirely last, though. Within a few weeks, LeDuc found himself backsliding. But he says the medication did give him a new, improved baseline, and it also gave him something else - a bit of hope.
SUMMERS: That was NPR's Will Stone. Earlier in this episode, you heard reporting from LAist reporter Jackie Fortier. It's CONSIDER THIS FROM NPR. I'm Juana Summers.
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