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When Ed Hornick first contracted symptoms of COVID-19 last January, he assumed that one day he would feel better. But a year later, like millions of others who have contracted the virus, he is still ill. This torturous cycle of debilitating brain fog, fatigue and muscle aches – which Hornick, a Yahoo News editor recently wrote – has so far been referred to by mostly informal names, such as “long COVID.”
But at a press conference on Wednesday, Dr Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, finally referred to it under an official name: PASC. “Many of you are now aware of what had long been called ‘COVID long’, but in reality these are post-acute sequelae of the SARS-CoV-2 infection, which we now call ‘ NOT C’.” Said Fauci.
With studies showing that nearly a third of patients with COVID-19 may have persistent symptoms, the National Institutes of Health announced this week that they are launching a scan to determine what is causing the constellation of symptoms. “It’s very difficult to process something when you don’t know what the purpose of the treatment is,” Fauci said at the press conference. “And that’s 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 magnitude of the symptoms, but also to try to. have a correlate which is in fact 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 an important development. “The name is important. I think the colloquial name of “long carriers” is great and helps patients relate to others, ”Sanville tells Yahoo Life. “But from a medical point of view, the name is important because it gives it a little truthfulness that it wouldn’t otherwise.”
Sanville says the inclusion of “sequelae” – which technically means “sequela of a disease” – helps capture the wide variation in symptoms that long-haul travelers experience. “It’s different from using ‘disease’; the disease is something much more subdued and we know it has a particular pathophysiology behind it, ”says Sanville. “Whereas a syndrome, or sequelae, is something that is associated with – well, in this case, the SARS-CoV-2 virus. But we’re not sure exactly what’s causing it, and it’s probably a series of different things. . “
He hopes the name will add legitimacy to the condition, which he is currently seeing at the rate of six new patients per week. “Giving it a name that doctors and nurses understand also helps give it some reality,” he says. “I had a patient the other day who complained that the doctor she had seen had just called her neurotic. So – not that I necessarily have magic answers for all of these patients – but it’s so widespread that it seems unlikely. .. it’s just in people’s brains. “
Equally grateful for the new name is Dr Ruwanthi Titano, a specialist in cardiology from Mount Sinai who has treated more than 260 patients with cardiac symptoms of PASC. “I think that’s an apt name – showing that it’s after the acute illness there’s these long term sequelae that we really see coming out of carpentry,” she says. Titano is especially happy to hear about NIH’s plans to study the disease, in which symptoms range from shortness of breath and heart palpitations to hair loss and numbness.
“I think more [patients] we see, the more comfortable we are in recognizing the syndrome – but what we should do with it is still pending, ”Titano says. There is a general approach that I take, 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 having help and funding at the NIH level is really important to collect data, create registries, and then go ahead and say, ‘We have these unanswered clinical questions. . ‘ “
For people like Hornick, recognition and naming are long overdue. “It’s incredibly heartwarming to know that what I’ve been through for the past 10 months has an official name – and that significant research and resources are being spent on dealing with it,” says Hornick. “Hopefully scientists can get to the bottom of not only PASC, but also afflictions like chronic fatigue syndrome and fibromyalgia, which still remain a mystery to doctors.”
Titano is optimistic they will. “I have a lot of hope,” she says. “I think, you know, the alternative is really dark and, because in my experience, I’ve seen a lot of patients improve. It’s been very gradual and gradual … but I’ve seen patients improve, and I think we’ll continue to see that as we learn more and more. “
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