The Toll: Are 'long-haulers' the key to understanding COVID-19?

Oct 1, 2020

On this first day of October, WBFO concludes its series "The Toll." For the last two months, we've been telling the personal stories of Western New Yorkers who've survived COVID-19 and those who haven't.

But as WBFO's Marian Hetherly reports, another group of people has since emerged that medical experts are just beginning to understand. This group may forecast just how great a toll the coronavirus ultimately takes on our society.

Meet Paulette Bailey. She's a nurse working in Buffalo who lives with her partner in East Amherst. Bailey said she got the coronavirus the third week in March, before people were mandated to wear face masks in public and before testing was widely available.

"I was working and I had a patient cough all over me. She couldn't really control her cough the whole time she was with me, which was about 30 minutes," Bailey said. "Then it was probably three days later, I woke up and I had some diarrhea, which was very unusual for me."

At 57 years old, Bailey considered herself fit and healthy, although she has Hashimoto's disease, an auto-immune disorder that can cause an underactive thyroid. So the nurse went to work the next day and explained the bout to her supervisor, who sent Bailey home. It was another month before she was able to get tested—and the result was positive.

Little did she know what was to come.

"Then I started getting the respiratory symptoms: a cough, fever, occasional chest pain, my oxygen saturations were going down at times," she said. "I did a lot of breathing exercises to try to expand my lungs. My symptoms got better. I thought I was over it for about a month and a half."

Bailey thought it was safe to fly to Iowa for the funeral of her 17-year-old niece. She wore a face mask the entire trip, but many Iowans weren't. When symptoms returned, Bailey said her next COVID-19 test came back positive—again—and New York State counted her as a new case.

Members of the Senate Committee on Health, Education, Labor & Pensions meet Set. 23 to receive an update on the nation's response to COVID-19.
Credit U.S. Senate Screenshot

"A number of individuals who virologically have recovered from infection, in fact have persistent—measured in weeks to months—of symptomatology that does not appear to be due to persistence of the virus," said Dr. Anthony Fauci in testimony before a Senate committee last week.

Fauci has become a household name this pandemic. As the immunologist who heads the National Institute of Allergy and Infectious Diseases, he's been a leader in America's fight against COVID-19. He reported on people like Bailey and several others WBFO interviewed for "The Toll."

"They're referred to as 'long haulers.' They have fatigue, myalgia, fever and involvement of the neurologic system, as well as cognitive abnormalities, such as the inability to concentrate," Fauci said. "In addition, we found to our dismay that a number of individuals who have completely recovered and apparently are asymptomatic, when they have sensitive imaging technology, such as magnetic resonance imaging, or MRI, have found to have a disturbing number of individuals who have inflammation of the heart. These are the kind of things that tell us we must be humble that we do not completely understand the nature of this illness."

"Relatively little is known about the clinical course of COVID-19 and return to baseline health for persons with milder, outpatient illness," said the Centers for Disease Control and Prevention at the end of July, when the pandemic was at its peak.

At the time, a CDC study found a third of people who tested positive for the coronavirus but were not sick enough to be hospitalized were enduring long-term effects, but others have found as much as twice that.

"These are the kind of things that tell us we must be humble that we do not completely understand the nature of this illness." —Dr. Anthony Fauci talking about long-haulers

"COVID-19 is the most significant public health challenge that our nation's faced in more than a century," said CDC Director Dr. Robert Redfield in last week's Senate testimony.

Dr. Nancy Nielsen, senior associate dean for Health Policy at the University at Buffalo and a former president of the American Medical Association, has been answering questions about COVID-19 in a weekly appearance on WBFO since the pandemic began. She explained the long-term effects of the virus this way:

"First of all, the symptoms do linger for months. We know that. This is not a two-week disease," Nielsen said. "But that's a different issue than can somebody get infected again and we can't totally dismiss that."

Nielsen noted a man in Hong Kong who was hospitalized for COVID-19 in March, tested negative twice, then five months later during an international trip, tested positive again. That was the first of only a couple confirmed cases of reinfection in the world.

"And then one other study was done in South Korea. This is important," Nielsen said. "Their version of the CDC studied 285 people who had positive tests months after getting the infection originally. They tried to grow virus and could not, and none of those people transmitted disease to anyone else. The theory is that these were likely dead viral particles that were being picked up by testing."

The bottom line, Nielsen said, yes, it's remotely possible to get infected again with a related strain of coronavirus, but "you'll probably be protected anyway." The Erie County Health Department told WBFO it does not keep data on reinfections.

More than 7 million U.S. coronavirus cases have been reported to the CDC since Jan. 21. Fauci said his team will be pursuing the experiences of long-haulers "in the future," but where does that leave Bailey and hundreds of thousand others?

"How has this affected your relationship, your daily routine?" WBFO asked Bailey.

"Since March, right away, we've had separate bedrooms and separate bathrooms," Bailey said. "We social distance in the house. We wear masks if we're near each other. If I ever prepared food, I was super careful, made sure everything was very clean. When my partner's been gone and I needed groceries, I order them online and I drive to the store and put them in my trunk. I don't want to go into the grocery store anymore. I'm scared."

Bailey's partner is a doctor at Sisters St. Joseph's Hospital, which until the begining of August was an all-COVID campus.

"So he was getting exposed regularly at work and sometimes at home, but for some reason he seems to be very resistant to it. He's gotten tested so many times and always negative—and thank goodness," she said.

When Bailey talked with WBFO in mid-September, she had just received two negative COVID-19 tests, again.

"We've been told that I'm not infectious anymore, by the state. So for the first time this week, we actually touched each other, you know, gave a hug and a kiss after so many months. It's been weird being in a house and you can't even touch each other," Bailey said.

"How would you assess the medical care you've gotten throughout this experience?" WBFO asked.

"So my primary doctor, who's an Internal Medicine doctor, told me yesterday there's nothing more he can do for me," Bailey said. "It's a lot of frustration. It just felt like the doctors don't know what's going on. I understand how they're feeling, They don't have enough information. That was one of the reasons I went on Facebook."

A number of online support groups have appeared, searching for answers about the effects of the coronavirus over the long haul.

"It's been very helpful," she said. "Many people are not getting support from even their family and friends, because people think it's all anxiety or depression. They're grouping us into a category of, you know, craziness, that, you know, like we're imagining these symptoms or something, I don't know, but that's very disheartening that that's happening to so many people. This group, we're there for each other and give each other support."

Bailey's been learning online what's working for other long-haulers. For example, she's now looking into the Center for Post-COVID Care at NYC's Mount Sinai Hospital, which acknowledges on its website that COVID-19 behaves so differently in many patients, it can affect many systems of the body and the long-term effects aren't clear yet.

Bailey hasn't worked since July 6 and has applied for disability.

"Yeah, life will never be the same again," she said.