By Thomas Goldsmith
Talk with UNC Health physician John Baratta and his patient Tony Marks about long-haul COVID and two points quickly surface.
Baratta, founder and head of the UNC COVID Recovery Clinic, said that the cause of the syndrome affecting millions of Americans remains unclear after more than two years of the pandemic. The extended bouts that follow initial COVID cases can last for weeks, months and now, for some, a year beyond more usual cases.
And the lack of an underlying cause for the syndrome means that treating symptoms remains the only path for doctors to offer patients.
For Marks, a long-COVID patient from Pinehurst being treated at the clinic, that lack of knowledge means there’s no clear end in sight for his year of pain and life upsets.
“We’re still battling the unknown about what this is doing to us internally,” said Marks, 52, an executive at a company that creates and supplies software for smaller government units.
“How has this affected our organs? It’s too new, right? I think every COVID long-hauler would say the same thing,” said Marks. “We just want our old body back. We want our old self back.”
Baratta, a rehabilitation specialist on the faculty at the UNC School of Medicine, was named director and founder of the recovery clinic in March 2021. That was only about a month after the syndrome that people had been calling long-COVID or long-haul COVID got an official name from the National Institutes of Health: Post-Acute Sequelae of SARS-CoV-2 infection or PASC.
Approaching a year on the job, Baratta has seen in Marks and in hundreds of others the evidence that long-haul COVID has proven every bit as serious and mysterious as patients’ accounts of lingering aches, pains, shortness of breath, relentless fatigue and brain fog. PASC research now draws hundreds of millions annually in federal dollars, but it was people who encountered these after-effects who first brought it to the attention of the medical establishment.
It’s the real thing
“Physicians many times can’t see it, they can’t hear it with a stethoscope and that makes it a little harder for us,” Baratta said in a phone interview.
Even with in-depth medical workups, clinicians don’t find the kinds of pathologies and metabolic markers that usually speak clearly of a newly recognized disease.
“The lab work and the imaging comes back normal and the patient’s complaints or concerns are vague and unable to be really objectively seen by the physician,” he said. “I think that is a setup sometimes for medical providers’ dismissing the concern or blaming it on psychological issues, such as depression or anxiety, or malingering.”
At the UNC clinic, care of patients often involves compiling a long list of ongoing symptoms, sometimes realizing new problems they had not connected with long COVID. Discussion of symptoms — of what is part of long COVID and what is not — comes as part of creating an evaluation plan for the patient.
“A lot of times these tests are normal, but it’s important for us to rule out other underlying medical conditions,” Baratta said. ‘For example, if someone is anemic, like if they’ve low blood counts, that would be important to know if they’re having fatigue because that can be the cause of their fatigue. Or it could be a complicating factor and slow down their recovery with long COVID.”
Marks, a husband and the father of two grown sons, harbors no doubt of the reality he’s encountered in long COVID. It’s been “off the charts” compared to anything he’d ever experienced, he said in an interview. First told that he’d recuperate within six to eight weeks, he realized that the prognosis was unrealistic when he was barely able to walk.
“About four weeks after being home and not being able to work, I’d never felt anything like that,” Marks said. “The combination of muscle pain and fatigue was just overwhelming. I was holding steady at what I would consider poor health and noticing that I had more and more weird things happening to me.”
A startling set of long-COVID symptoms took hold, Marks said: brain fog that left him unable to remember recent conversations, struggles to breathe, muscle spasms, feelings of electricity through his legs and arms, arthritic sensations, rashes, insomnia, and unprecedented anxiety and depression.
Work hindered for more than half
“I see patients every day in our clinic who are profoundly affected by this post-viral syndrome and I find their concerns to be authentic and very genuine,” Baratta said. “These are people who many times were highly active, with few pre-existing medical conditions, if any.
“Over half the people that we see in our clinic have reduced their workloads, or are out of work, because they can’t do it, related to long COVID symptoms.”
Baratta and associates deal with some patients who endure shorter courses of long COVID before they simply emerge from the disease. But others are like Marks, who has weathered substantial life changes since his initial COVID-19 case hit hard then refused to let go.
“I’m coming up on a year. The only thing that has changed for me is that Dr. Baratta suggested that I do some physical therapy and that did make my leg stronger so that I am now at least able to walk better,” Marks said. “I am overall stronger. But here I am a year later. And I’m still battling the exact same side effects that I had eight months to a year ago.”
It took international feedback from COVID patients to convince clinicians that long COVID symptoms indeed were a “thing.” Medical and academic response came after patients made a case for it, often on social media, even as some of the problems weren’t showing up in imaging or other tests.
And though designated as a new, separate syndrome, PASC shares symptoms that may dog people after enduring other viruses, such as the original SARS, or Ebola.
“I think it sheds light on how little we know about these viral fatigue illnesses,” Baratta said. “In medical school, I learned a little bit about chronic fatigue after mononucleosis, for example. But I certainly didn’t get much training on it. And then I don’t think that at this point, our education and our knowledge base is very strong on this type of syndrome.”
‘Things were looking pretty rough’
PASC descended on Marks following his bout of COVID about a year ago. He contracted the disease when working on a remodel of a house for a family member. Vaccines had not yet been made available to people his age. Everyone involved with the project was infected, but only Marks wound up in the hospital, on Feb. 5, 2021.
“I was hospitalized for one day and then six days later I was back in the hospital again, much worse off,” he said. “I had developed COVID pneumonia at that time, and things were looking pretty rough.”
Marks’ hospitalization brought treatment including 24-hour oxygen, intravenous fluids and steroids, shots of blood thinner, doses of remdesivir treatments, and, upon discharge, the word that he was lucky to be walking out at all.
Even after discharge, things were falling apart for Marks. He felt terrible pretty much all the time.
Neither he nor his attending doctor knew why.
“My doctor said, ‘I’m not downplaying what you’ve got,’” Marks said. “‘I’ve seen COVID patients before, but they have all gotten better in a week or two. I can obviously look at how much pain you’re in, your struggles, your respiratory problems, but I don’t know what to do for you at this point.’”
As an internet-generation man, Marks took to his computer in a desperate quest to find out what was going on. Encountering support groups and medical websites focused on the new syndrome, he learned he wasn’t alone in navigating long COVID’s sea of symptoms. And he learned about the clinic that Baratta and colleagues had started, just about 65 miles away in Chapel Hill.
Complex interaction of symptoms
Marks also returned to work even though he was still vexed by the inability to concentrate caused by brain fog. Fatigue limited him to about one to three hours of a lower level of work responsibility. That arrangement was based on an understanding of his condition at the software company where he was a valued manager.
Accepted as an outpatient participant at the UNC clinic, Marks became the object of medical attention aimed at helping him recover.
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As the overall picture for COVID continues to change, with the onset of vaccines and variants, research shows that between 15 percent to 80 percent of patients experience some long-haul symptoms. One of the most troubling symptoms is attention and memory problems known as “brain fog.” Contributing factors include fatigue, poor sleep and challenges with adjusting to a new chronic illness, including depression and anxiety symptoms, Baratta said.
“In other post viral syndromes, there are reports of, of some cognitive dysfunction or like memory or attention issues,” Baratta said. “And people with chronic Lyme disease or people who have chronic fatigue syndrome report that, so these are not not totally new concerns.
But again, they’re more brought to light at this time because of the tremendous number of people that are affected all at once.”
Not knowing what’s ahead
New research seems to appear almost daily about the nature and possible treatments for long COVID. At the UNC clinic, means of dealing with the syndrome include cognitive rehabilitation, some medications, dietary modifications and lifestyle changes. But healthier living doesn’t take aim at the heart of the problem, Baratta said.
“Because there’s no clear reason that we know that people are developing long COVID, we don’t have a single treatment to address the underlying issue,” he said. “And as such, the best approach for addressing a condition like this is to treat and manage the symptoms and their recovery.”
Many patients like Marks take part in widespread online support groups as well as academic studies at a range of institutions. They know that fellow “long-haulers” encounter bewilderingly different symptoms and periods of involvement, sometimes peaking more than once. Perhaps even more troubling is the idea that no one can predict the long-term effects of long COVID.
“But none of us know when that’s going to happen,” Marks said. “There have been a number of long haulers who got better, right? And then they relapsed. So, why did they get better and why did they relapse? And why have some of us never gotten over this? There’s just so many variables. That’s the other thing that everybody has to keep in mind or that everybody should know, is that it’s different for every one of us long haulers.”