Doctors estimate that up to 30% of people who get COVID-19 become what’s known as “COVID long-haulers," people who contract the virus and have lingering symptoms months after being sick.
UT Health Austin, which is the clinical practice at Dell Medical School at UT Austin, has been operating a program that collects information on long-haulers and tries to be a resource for primary care doctors and their patients who are struggling with long COVID.
A few weeks ago, a small group of doctors and nurses in the program, known as the Post-COVID-19 Program, hosted a webinar for people who are in an online support group for COVID long-haulers.
They fielded a wide range of questions, like how to combat the persistent “brain fog” they have post-COVID.
Dr. Esther Melamed, a neurologist and research director for the program, says this is a common post-COVID symptom that makes it difficult to concentrate and impacts retention and memory. She told members of the support group that it’s still kind of a mystery.
“The causes of brain fog are not currently completely well understood,” she said, “but it may relate to ongoing inflammation or auto-immunity either systemically in the body or in the brain post-COVID.”
"We really realized that there is a group of patients out there who have been really suffering and bouncing around from doctors without clear answers."Dr. Michael Brode, assistant professor at Dell Medical School
But Melamed told members of the support group that there are things that could help, like working out a little more — particularly cardio. Getting better sleep and eating a healthier diet are also things that help your brain.
“In terms of specific exercises for the brain, it’s important to keep the brain challenged and to continue to learn,” Melamed said. “Picking up new skills can really help, like learning an instrument.”
Melamed told members of the group that learning a new language and doing Sudoku puzzles could also improve brain function.
Members also asked questions about constant fatigue and expressed fears about long-term damage to the lungs and heart and blood clotting.
Dr. Michael Brode, an assistant professor of medicine and population health at Dell Medical School, said there is still a lot we don’t know about long COVID, including how many people who get COVID are likely to have symptoms months later.
“It’s a little tough,” he said. “Each study there’s not consensus about how we track symptoms or report it. But we are thinking about 10 to 30 percent of people at six months will have persistent issues.”
That’s a large number of people, given the roughly 100,000 people who have gotten sick with COVID in Austin alone. Brode said he and the team at Dell Med have set their sights on helping two groups of people, the first being primary care physicians.
“We are going to be helping educate them on how to take care of these patients in the primary care setting because that’s where they are being seen,” Brode said. “And then we really realized that there is a group of patients out there who have been really suffering and bouncing around from doctors without clear answers.”
He said that’s why the team is talking directly to people with post-COVID symptoms in settings like webinars.
“Our program really wants to be kind of a clearing house for what is good information and what is known and unknown,” Brode said.
There’s still a lot of frustration among COVID long-haulers, he said, and a lot of them are desperately seeking answers. One cause of frustration is that most testing isn’t helpful.
Brode said a lot of these people go through a litany of exploratory tests to figure out what's going on and all the tests come back normal. But patients say they know something is wrong.
“The way I describe it is, the disease is almost like the kitchen wiring is faulty and kind of sparking, but the tests we have are a fire alarm,” he said. “And so, if the wiring catches fire, the alarm will catch it.”
But, unfortunately, that metaphorical fire alarm is not sensitive enough to catch these patients' issues, Brode said.
He said there is so much still to learn and improve upon for treating people with long COVID. But he said it’s been helpful just to assure patients who feel alone in their illness — and the doctors treating them — that long COVID is real and there are ways to manage the symptoms until a cure is discovered.
“A lot of what I am providing is reassurance," Brode said.
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