When Ed Hornick first encountered COVID-19 symptoms last January, he assumed he would feel better one day. But a year later, like millions of others who contracted the virus, he is still ill. This torturous cycle of debilitating brain fog, fatigue and muscle aches – about which Hornick, a senior editor at Yahoo News, recently wrote – has so far been mostly called by informal names, such as ‘long COVID’.
But during a press conference on Wednesday, dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, finally referred to it with an official name: PASC. “Many of you are now aware of what has long been called ‘long COVID’, but in fact it is post-acute consequences of SARS-CoV-2 infection, which we now call ‘PASC’.” Fauci said.
Some studies have shown that as many as a third of patients with COVID-19 may experience persistent symptoms, the National Institutes of Health announced this week that it is beginning an analysis to find out what causes the constellation of symptoms. “It is very difficult to treat something if you do not know what the purpose of the treatment is,” Fauci said during the press conference. “And that’s why it’s extremely important to look at these individuals, not only the extent of these, but also the depth and breadth of the symptoms, but also to try to have a correlate that is actually the pathophysiological correlate. “
Dr. Bradley Sanville, a pulmonologist at UC Davis who treats patients with PASC at the facility’s Post-COVID clinic, says Fauci’s announcement is an important development. “The name is important. I think the colloquial language of ‘long guards’ is good and helps patients identify with others,” Sanville tells Yahoo Life. “But from a medical point of view, naming is important because it gives a little truth that it would not otherwise have.”
Sanville says that the inclusion of ‘sequelae’ – which technically means ‘after-effects of a disease’ – helps to capture the wide variety of symptoms experienced by long-term caregivers. “It’s different from using ‘disease’; disease is something that is much more discreet and we know there is a specific pathophysiology behind it,” says Sanville. “While a syndrome, or consequences, is something related to – well, in this case SARS – CoV – 2 virus. But we do not know exactly what causes it, and it’s probably a collection of some different things that happen. “
He is hopeful that this name will increase the legitimacy of this condition, which he is currently seeing at six new patients a week. “Giving it a name that doctors and nurses understand also helps to give it some reality,” he says. “I had a patient the other day who complained that the doctor she saw just wrote her off as neurotic. So – not that I necessarily have magical answers for all these patients – but it’s so common that it’s unlikely looks … it’s just in people’s brains. ‘
Dr. Ruwanthi Titano, a cardiology specialist on Mount Sinai, treated more than 260 patients with PASC symptoms. “I think it’s an appropriate name – to indicate that after the acute illness, it’s these long-term consequences that we’re really seeing coming out of the woodwork,” she says. Titano is particularly pleased with NIH’s plans to study the condition, for which symptoms range from shortness of breath and palpitations to hair loss and numbness.
‘I think the more [patients] we see, the more comfortable we are in recognizing the syndrome – but what to actually do with it is still in the air, “says Titano. There is a general approach I follow, but then I have to be very individualized for each patient … and so we adapt all the time. This is a critical area where I think NIH-level assistance and funding is really important in collecting data, making records, and then going ahead and saying, ‘We have these unanswered clinical questions.’
For people like Hornick, recognition and nomination are no longer necessary. “It’s incredibly comforting to know that what I’ve been through for the past ten months has an official name – and that important research and resources are devoted to tackling it,” says Hornick. “Hopefully, scientists can not only treat PASC, but also ailments such as chronic fatigue syndrome and fibromyalgia, which are still a mystery to doctors.
Titano feels optimistic that they will do so. “I’m very hopeful,” she says. “I think because the alternative is really obscure, because based on my experience I have seen many patients improve. It was very incremental and gradual … but I have seen patients improve, and I think we will continue to see it as we learn more and more. ‘
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