Understanding of long COVID shifting at ‘breakneck speed’
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PHILADELPHIA — The understanding of long COVID, its symptoms and even its definition, continues to rapidly change amid a flood of data, according to Leonard H. Calabrese, DO, and Alfred Kim, MD, PhD, at ACR Convergence 2022.
“The story within the story of COVID-19 is trying to get our head around this concept of long COVID,” Calabrese, professor of medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, RJ Fasenmyer chair of clinical immunology at the Cleveland Clinic, and chief medical editor of Healio Rheumatology, said in his presentation. “This is not a 10-minute discussion.”
Kim, assistant professor in the division of medicine at the School of Medicine at Washington University in St. Louis, meanwhile noted the “rapidly evolving” field of COVID-19 research.
“It is moving at a breakneck speed,” he said.
The two experts cohosted a virtual community hub on long COVID at the ACR meeting.
According to Calabrese and Kim, the body of research into COVID-19 is keeping pace with the virus, which means that a flood of studies in long COVID is also beginning to emerge.
“We are starting to learn how to identify it a little bit better,” Kim said.
Early epidemiology suggests that between one-third and 40% of patients with COVID-19 experience “some lingering subjective symptoms” at 3 months or longer after acute infection, according to Calabrese. However, he added that, as time stretches on, it is possible that some patients may continue to experience long COVID symptoms for up to 18 months after acute infection.
Another challenge is that the definition of long COVID itself remains elusive. There are at least 50 — and maybe more than 200 — that have been attributed to long COVID, according to Calabrese.
“It is a lot of symptomatology to weave ourselves through,” he said.
One consideration is that it is important to differentiate between types of long COVID, Calabrese added. On one hand, there are clearly defined sequelae such as myocarditis, hypercoagulability, pulmonary scarring and stroke. For these conditions, the mechanism is understood.
On the other hand, there are also “medically unexplained” symptoms, Calabrese said.
“That is dominated by chronic fatiguability,” he said, adding that cognitive complaints and dysautonomia also fall into this category.
Poor sleep and “post-exertional malaise” that can put a patient into “crash-and-burn mode” for extended periods have also been reported, according to Calabrese, along with poor executive function, compromised vision and issues multi-tasking.
Kim added that understanding “circadian dysfunction” may aid rheumatologists in identifying and defining these sleep- and fatigue-related outcomes. He noted that the presence of tau in the cerebrospinal fluid, which is also seen in rheumatic diseases like lupus, could be an area of future research in this population.
Regarding risk factors for long COVID, severe acute infection tops the list. However, patients with mild or asymptomatic disease have also reported ongoing symptoms. Women are more likely to report long COVID symptoms, as are older individuals.
Protection from long COVID can start in one place: “Don’t get COVID-19,” Calabrese said.
Vaccination is also likely to reduce the risk for these complications.
Meanwhile, more recent data are suggesting that prompt use of antiviral therapy may “palpably decrease risk,” according to Calabrese.
Treatments targeting long COVID do not exist as yet. Thus, many clinicians find themselves in the difficult position of managing a condition that is poorly defined and has no clear therapeutic options. With that in mind, Calabrese urged empathy.
“I tell people that this is not in their head, that this is a real condition,” he said. “It is not their fault. I tell them, ‘I hear you.’”
Although empathy is not a substitute for effective therapy, validating patients can be beneficial in managing whatever symptomatology any given patient is experiencing.
For Kim, it is important to understand that many other infectious diseases have demonstrated post-infectious sequelae. He suggested that other viruses and previous epidemics could ultimately hold clues to the management of long COVID.
“This is not a new concept,” he said.
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Calabrese L, Kim A. Community Hub: Long COVID in Rheumatology. Presented at: ACR Convergence 2022; Nov. 11-14, 2022; Philadelphia (hybrid meeting).
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