When Ed Hornick first tested positive for COVID-19 last January, he assumed he would one day feel better. But a year later, like millions of people who contracted the virus, he is still sick. This tortuous cycle of debilitating brain fog, fatigue and muscle pain – which Hornick, senior editor at Yahoo News, recently wrote about – has been referred to by mostly casual names so 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 him by an official name: PASC. “Many of you are now aware of what was long called ‘prolonged COVID,’ but in reality, what it really is is the post-acute sequel to the SARS-CoV-2 infection, which we now refer to as ‘PASC’ “. Fauci said.
With some studies showing that up to a third of COVID-19 patients may experience persistent symptoms, the National Institutes of Health announced this week that they are launching an analysis to find out what is causing the constellation of symptoms. “It’s very difficult to treat something when you don’t know what the goal of the treatment is,” Fauci said during the press conference. “And that’s why it’s extremely important to look at these people, not just the extent of this and not just, you know, the depth and breadth of the symptoms, but also to try to have some correlation that is actually the pathophysiological correlate “.
Dr. Bradley Sanville, a UC Davis pulmonologist who treats patients with PASC at the facility’s Post-COVID Clinic, says Fauci’s announcement is a significant advance. “The name is important. I think the colloquial name ‘long distance carriers’ is fine and helps patients identify with others,” Sanville tells Yahoo Life. “But from a medical point of view, naming is important because it gives you a bit of veracity that you wouldn’t have otherwise.”
Sanville says that the inclusion of “sequelae,” which technically means “side effect of a disease,” helps capture the wide variety of symptoms long-haul carriers experience. “It’s different from using ‘disease’; disease is something much more discreet and we know that it has a particular pathophysiology behind it,” says Sanville. “While a syndrome, or sequelae, is something that is associated with, well, in this case, the 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. that are happening.. “
He is hopeful that this name contributes to the legitimacy of this condition, which he currently sees at a rate of six new patients per week. “Giving it a name that doctors and nurses understand helps give it some reality as well,” he says. “I had a patient the other day who complained that the doctor that she had seen had just dismissed her as neurotic. So, not that she necessarily has any magic answers for all these patients, but it is so frequent that it seems unlikely. … it’s in people’s brains. “
Equally grateful for 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 is after acute illness, there are these long-term sequelae that we are really seeing come out of the woods,” he says. Titano is particularly happy to hear about the NIH’s plans to study the condition, whose 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 recognizing the syndrome, but what to really do with it is still up in the air, “says Titano.” There is a general approach that I take, but then I have to individualize a lot 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, make records, and then go ahead and say, ‘We have these clinical questions unanswered.
For people like Hornick, recognition and appointment were 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 devoted to addressing it,” says Hornick. “Hopefully, scientists will be able to get to the bottom of not only PASC, but also afflictions such as chronic fatigue syndrome and fibromyalgia, which remain a mystery to clinicians.”
Titano is optimistic that they will. “I have high hopes,” he says. “I think because, you know, the alternative is really bleak and, because in my experience, I have seen many patients improve. It has been very gradual and gradual … but I have seen patients improve, and I think we will continue to see that as that we learn more and more. “
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