By Thomas Goldsmith
Tony Marks in Pinehurst and Brooke Keaton in Charlotte both lived orderly, productive lives two years ago. That was clearly reflected in their steady jobs and close family ties.
However, their experiences with the long-term effects of infection with the COVID-19 virus have touched and in many cases devastated nearly every other aspect of each of their days.
Marks and Keaton don’t know each other, but both have worked with John M. Baratta, who practices physical medicine and rehabilitation at the University of North Carolina COVID Recovery Clinic. There, Baratta and his colleagues attempt to explore several paths out of these lingering, disabling after-effects of the pandemic.
“I haven’t had a day in over a year and a half that I have not hurt, that I have not been tired, that my hands just don’t feel like they have arthritis,” Marks, 55, a software executive, said during a physical therapy session at the clinic. “I just can’t explain how bad I just physically hurt, on a day-to-day basis, and there’s the fatigue, and so I know there’s gotta be something else, right? And that’s why I want to do this so badly.”
As Marks battles the lingering effects of COVID, he faces unpredictable limits on his working days. Keaton struggles with her symptoms so much that she has lost her job as a preschool teacher.
However, in the larger picture emerging from the UNC clinic and others, there are signs that help may be on the way for the patients known as COVID “long haulers” — aid in the form of new research, promising treatments, and evolving approaches to therapy.
New research holds hope
Approaches monitored at the UNC clinic include new hard science about microclots that may lie at the heart of some of long COVID’s symptoms, a potentially game-changing analysis introduced by South African researcher, Resia Pretorius.
“Her lab has demonstrated that there are circulating microclots in the blood of many people with long COVID,” Baratta explained during an interview at the Chapel Hill-based clinic. “These clots don’t necessarily block blood vessels causing stroke or heart attack. What these microclots do is trap inflammatory molecules and they prevent the breakdown of some of the inflammation.
“So these circulating microclots can cause this persistent inflammatory process. And they’ve actually, in some early clinical research, been trying to anticoagulate patients in an attempt to break down the microclots and some of their early data suggests favorable results.”
The theory of microclots’ role in the disease has created excitement as an example of a new direction, even though Pretorius’s findings were based on a relatively small sample of patients and separate research found lower levels of microclotting in the vessels of other long COVID patients.
It’s too early to know whether Pretorius’s findings will be replicated on a large scale, Baratta said, but her findings show the kind of progress that will be necessary to advance the treatment of long COVID.
Known internationally before her research on long COVID, Pretorius gave the keynote speech at a symposium on approaches to long COVID presented by UNC in Greensboro in May.
How many people have long COVID?
A U.S. Government Accountability Office estimate found that more than seven million people, and as many as 23 million people nationally have long COVID.
A recent study of more than 100,000 people in Scotland, regarded as authoritative because it relied on National Health Service data, found that 6 percent of people diagnosed with acute COVID-19 had not recovered at all and 42 percent had only partially recovered.
How to avoid energy deficits
Closer to home, therapists at the clinic give advice to patients on rationing their energy by comparing it to a balance on a credit card, a finite amount that must be carefully monitored lest it fall into a steep deficit. UNC clinic staffer Courtney Matrunick, who holds a doctorate in physical therapy, explained the theory about pacing to Marks during a visit to the Chapel Hill clinic. She told him that he will exhaust his energy balance more quickly as a COVID long hauler.
“Every morning you’re waking up and getting $100. It may not feel like you’re getting $100, but you’re getting this $100,” Matrunick said during a therapy session in a clinic examination room. “But you’re using more. So now you’re in a deficit. Right? So the next morning — and this is just super simplified — you have $100 and you use $150. You’re in a $50 deficit already.
“Then the next day you wake up and you don’t even have the energy to pay off that bill. But you still have to survive. You still have to eat, you still have to do everything, but you feel like, ‘I can’t get out of bed,’” she said. “And that’s because you literally have used everything.”
Matrunick said that’s often when a long COVID patient ends up needing to stay in bed for a couple of days to catch up.
Oxygen deprivation may cause long-haul symptoms
Researcher Pretorius asserts that some clinicians have made incorrect diagnoses in cases of long COVID because most tests don’t pick up on the presence of inflammation hidden within the microclots she’s studying.
“Many people feel that they go to a clinician and they are misdiagnosed,” Pretorius said during a video interview with the PolyBio Research Foundation. “Many of the typical laboratory blood-type analyses will not pick up any differences in inflammatory markers. And the patient has become very desperate as the condition is ascribed to a psychological issue.”
In Pretorius’s research, two infusions of the anticoagulant drug succeeded in dissolving the microclots. This allowed treatment of the inflammation that can cause damage to blood vessels and prevent oxygen – known as hypoxia – from reaching cells.
“And if you look at the (long COVID) symptoms closely, it all comes back to a hypoxia of certain organ systems — whether it’s the muscle not getting enough oxygen, whether it’s liver damage, whether it’s brain fog concentration issues,” Pretorius said. “One can all bring it back to a reason why the symptoms might happen, because of oxygen deprivation to certain areas.”
‘Where’s the part where you apologize?’
Keaton, now 42, had been a go-to teacher, mom to two girls, a wife and someone deeply involved in church with a broad community of family and friends, when she was diagnosed with COVID-19 in December 2020.
“I was a fun teacher,” Keaton said. “They knew I played music and I would say, ‘We will dance! We will have a party on the playground!’
“And now I can’t even walk down the steps down to my kitchen without becoming short of breath. Even now having this conversation with you, I feel myself being short of breath.”
During a phone call from Charlotte, Keaton told of how missed diagnoses caused problems in her now yearslong effort to address her post-acute COVID symptoms. She said she’s heard of similar experiences during online discussions as a part of a group of Black women facing long COVID.
Keaton described an attempt to steer her on an unproductive path by a doctor who seemed determined to act on a particular diagnosis.
“I went in explaining to her the fatigue, the memory loss, the brain fog, the issue with the numbness in my hands and my feet, and feeling vibrations,” Keaton said. “And she looked at me and she’s like, ‘I think we need to test you for sleep apnea. Has that ever been a concern?’”
Researchers have found a high incidence of undiagnosed sleep apnea in African Americans, but Keaton pointed out that her husband could attest to the fact that she didn’t even snore.
“And her whole thing was like, ‘I think all of this is because you have sleep apnea,’” Keaton said. So Keaton spent money on testing at home and at the physician’s office, both of which indicated she did not have sleep apnea.
“And she just kind of left it there. I’m like, ‘So we determined I don’t have sleep apnea. What can we do about everything else?’” Keaton said. In response, the physician gave her pointers on how to get better sleep at night.
“So fast forward: ‘Where’s the part where you apologize to me for making an assumption, you know?’”
Adding insult to the entire process, Keaton has found her insurance coverage did not cover certain treatments and therapies that were otherwise recommended.
Other conditions similar to long COVID
Another direction for the clinic involves examining the overlap between long COVID and myalgic encephalomyelitis, also called chronic fatigue syndrome, abbreviated as ME/CFS. It shares a similarity with long COVID in that doctors sometimes overlook or minimize its symptoms.
About 20 percent of long haulers may also develop chronic fatigue, Baratta said.
“ME/CFS is a syndrome which has been recognized for many decades,” Baratta said. “It is thought to in most cases be post-viral, or post-infectious in nature and many people with ME/CFS have had difficulty getting their symptoms and the syndrome recognized in the medical community.”
Examining the reasons that chronic -fatigue cases are sometimes undiagnosed could reveal similar issues with recognition of long COVID, Baratta said. For one thing, many physicians are not trained to recognize these types of post-infectious disease fatiguing illnesses.
“So it’s not really on our radar when we evaluate patients,” he said. “The cases are not seen with great regularity. And that can also make it less likely for a doctor to think of it as a diagnosis.”
The subjective nature of the symptoms also comes into play.
“For example, someone might come into the office and say, ‘I’m fatigued. I feel like I don’t have as much energy as I did. I am not thinking as clearly as I used to,’” he said.
“These are not as easy to diagnose issues as a heart murmur, where you could listen with a stethoscope, and a doctor could clearly hear with their own ears.”
In addition, Baratta said, a clinician may think a patient is malingering or has an agenda such as an attempt to gain disability coverage.
The range and profundity of conditions that accompany long COVID — the intense fatigue, difficulty in concentration, chronic pain, shortness of breath — make faking it seem unlikely.
Crashing on the job
A long-time professional, Marks sounds distraught and unbelieving when he describes his attempts to keep working.
“I crash every day at work,” he said. And he said there’s no rhyme or reason as to the time, it can be first thing in the morning, or in mid-afternoon.
“And when I crash, I sleep, and I’m asleep anywhere from 30 minutes to two hours. Can you imagine being asleep for two hours at work?” he asked. “And I’m sleeping so hard and my neighbors in other offices are saying, ‘Dude, you slept good because you were snoring like a freight train.’”
He said that if he’s honest with himself, he really can only get in four hours of work during an eight-hour workday.
For Keaton, her case of long COVID has meant not only the physical and mental symptoms, but also losing her job, needing to replace her work-related insurance and chipping away at her typical role as a caretaker and problem solver.
She choked up briefly when talking about her change in personal status.
“I’ve always been a positive person,” Keaton said. “I had a rough time growing up, in certain situations with my parents.
“I’m just a fighter. I know that I’m going to get better. I have faith that I’m going to get better. I know that there is a reason for me going through this and before long you know God will reveal it.”
Despite the potential of multiple research efforts, there remains no set treatment or protocol to treat the condition. Some patients at Baratta’s clinic may receive medication, some are prescribed therapy and others are given suggestions about modifying their levels of activity.