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For more than a year, many Utah coronavirus patients with lingering, sometimes debilitating symptoms have struggled to get doctors to take them seriously.
When Lisa O’Brien sought help for muscle tremors, aches and a spiking heart rate, she said hospital staffers wrote off her symptoms as “anxiety” until she demanded a test that revealed blood clots in her lung and arm. She found other patients on social media who reported similar symptoms — and were similarly dismissed when they told doctors they feared COVID-19 was behind it.
Now, after months of advocacy and increasing evidence linking the coronavirus to neurological symptoms and other chronic problems, COVID-19 “long-haulers” have found vindication: The University of Utah is launching a clinic especially for them.
“It takes a village to take care of folks because COVID affects so many organ systems and we have so many different symptoms associated with long-term effects,” said Dr. Jeanette Brown, pulmonologist and medical director of the new clinic.
The clinic, which opened Tuesday, will incorporate an array of specialists — heart and lung doctors, neurologists, rehabilitation experts, psychiatrists and social workers, for example — to treat patients who are still recovering from severe illness, as well as those whose symptoms persist for weeks or months even if their initial bout was mild.
“It can be very debilitating for patients,” Brown said, “so the focus is not just on your symptoms but how the symptoms are affecting your life.”
O’Brien no longer could drive or stand up in the shower as her muscle control deteriorated in the months after she believes she contracted COVID-19, in March 2020. When she first became sick, testing was fiercely limited. By the time she finally received a test almost two weeks later, it came back negative.
That negative test would haunt her as doctor after doctor waved off her suspicion that she’d had the coronavirus. It was sending her body into a tailspin — even though she was finding online more and more fellow patients with similarly strange symptoms weeks after they had caught the virus.
“They wouldn’t even entertain the possibility I had COVID,” O’Brien said. “I started thinking, I’m not even going to bring up COVID because as soon as I do they say, ‘This person is crazy.’”
But researchers were finding mounting evidence of an array of long-term symptoms in some coronavirus patients, often with seemingly little to do with the respiratory infection that preceded them: tinnitus, or ringing in the ears; irregular blood pressure or heart rate; and, alarmingly, cognitive decline and other neurological problems.
“Common [symptoms],” Brown said, “include what people refer to as sort of brain fog: difficulty thinking, difficulty remembering, difficulty with conversations, headaches, nausea.”
O’Brien eventually was referred to a COVID-19 clinic at New York’s Mount Sinai Hospital, which faced a flood of patients after it opened last summer. She launched a Facebook support group for long-haulers that now is 3,100 members strong. In November, some of them began talking with U. officials about a clinic in Utah, O’Brien said.
“After months of having so many doctors dismissing us,” she said, “we’re just so grateful that these doctors really listened to us and took us seriously, and they want to help us and they’ve created this multidisciplinary post-COVID clinic for us.”
Patients are not required to have had a positive coronavirus test at the U. clinic, though a physician referral is preferred. That’s crucial, O’Brien said, because not having a positive test has been a major setback for lots of patients in her group when they try to seek care.
Demand likely will be high, Brown said, just like it was at Mount Sinai and at the University of Colorado, which, until this week, was Utah’s nearest long-hauler clinic.
But the clinic won’t just provide specialist care; it also will streamline medical studies, with a research coordinator to identify candidates as patients check in.
University researchers are already looking at, for example, the effect of COVID-19 on dental enamel, and whether symptom-tracking systems used for cancer patients are useful for long-hauler coronavirus patients, said Dr. John Inadomi, chair of the U.’s Department of Internal Medicine. He said he also would like to examine the possible reasons the virus often causes ringing in the ears.
“The best part,” Inadomi said, “is that stuff we learn through this research we can immediately implement.”
The buy-in of Utah’s long-hauler community, he added, makes it much easier for the clinic to produce robust research.
“The nice thing is that the patients who really need this [research] have already advocated for this,” Inadomi said. “The patients themselves have expressed a great desire to be able to participate in that process.”