When Ed Hornick first came down with COVID-19 symptoms last January, he assumed that one day he’d feel better. But a year later, like millions of others who contracted the virus, he’s still sick. This torturous cycle of debilitating brain fog, fatigue and muscle pain — which Hornick, a senior editor at Yahoo News, recently wrote about — has been referred to by mostly informal names thus far, such as “long COVID.”
But during a press conference Wednesday, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, finally referred to it by an official name: PASC. “Many of you are now aware of what had long been called ‘long COVID’ but actually, what that really is is post-acute sequelae of SARS-CoV-2 infection, which we’re now referring to as ‘PASC,'” Fauci said.
With some studies showing that as many as one-third of patients with COVID-19 may experience lingering symptoms, the National Institutes of Health announced this week that it is launching an analysis to figure out what is causing the constellation of symptoms. “It’s very difficult to treat something when you don’t know what the target of the treatment is,” Fauci said during the press conference. “And that’s the reason why it’s extremely important to take a look at these individuals, not only the scope of this and not only, you know, the depth and breadth of the symptoms, but also to try and have some correlate that actually is the pathophysiological correlate.”
Dr. Bradley Sanville, a pulmonologist at UC Davis who treats PASC patients at the facility’s Post-COVID Clinic, says Fauci’s announcement is a significant development. “The name is important. I think the colloquial name of ‘long haulers’ is fine and helps patients identify with others,” Sanville tells Yahoo Life. “But from a medical standpoint, naming is important because it gives it a little bit of veracity that it otherwise wouldn’t have.”
Sanville says that the inclusion of “sequelae” — which technically means “aftereffect of a disease” — helps capture the large variation of symptoms that long-haulers experience. “It’s different than using ‘disease’; disease is something that is much more discreet and we know has a particular pathophysiology behind it,” says Sanville. “Whereas a syndrome, or sequelae, is something that’s associated with — well, in this case, SARS-CoV-2 virus. But we don’t know exactly what’s causing it, and it’s probably a collection of a couple of different things happening.”
He’s hopeful that this name will add to the legitimacy of this condition, which he currently sees at a rate of six new patients a week. “Giving it a name that physicians and nurses understand helps it kind of give some reality too,” he says. “I had a patient the other day who complained that the doctor she had seen had just written her off as being neurotic. So — not that I have any magic answers necessarily for all these patients — but it’s so prevalent that it seems unlikely that … it’s just in people’s brains.”
Equally appreciative of the new name is Dr. Ruwanthi Titano, a cardiology specialist at Mount Sinai who has treated more than 260 patients with cardiac symptoms of PASC. “I think this is an appropriate name — showing that it’s after the acute illness, there are these long-term sequelae that we’re really seeing coming out of the woodwork,” she says. Titano is particularly happy to hear about NIH’s plans to study the condition, for which symptoms range from shortness of breath and heart palpitations to hair loss and numbness.
“I think the more [patients] we see, the more comfortable we are at recognizing the syndrome — but what to actually do with it is still up in the air,” says Titano. “There is a general approach I take, but then I have to get very individualized for each patient … and so we’re adapting all the time. This is a critical area where I think having NIH-level help and funding is really important to collect data, make registries and then move forward and say, ‘We have these unanswered clinical questions.'”
For people like Hornick, the acknowledgment and naming are long overdue. “It’s incredibly comforting to know that what I’ve been going through for the past 10 months has an official name — and that significant research and resources are being dedicated to tackling it,” says Hornick. “Hopefully, scientists will be able to get to the bottom of not just PASC, but also afflictions like chronic fatigue syndrome and fibromyalgia, which still remain a mystery to doctors.”
Titano feels optimistic that they will. “l am very hopeful,” she says. “I think because, you know, the alternative is really bleak and, because based on my experience, I have seen a lot of patients improve. It has been very incremental and gradual … but I have seen patients improve, and I think we will continue seeing that as we learn more and more.”