When Ed Hornick tested positive for COVID-19 last January, he assumed he would one day feel better. But a year later, like millions of others who contracted the virus, it is still sick. This tortuous cycle of debilitating brain fog, fatigue and muscle pain – about which Hornick, a senior editor at Yahoo News, recently wrote – has been referred to by informal names so far, 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 him by an official name: PASC. “Many of you are aware of what was long called ‘long COVID’, but in reality, what it really is are post-acute sequelae of SARS-CoV-2 infection, which we now call ‘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 it is launching an analysis to find out what is causing the symptom constellation. “It is very difficult to treat something when you do not know what the target of treatment is,” said Fauci during the news conference. “And that is the reason why it is extremely important to take a look at these individuals, not only the scope of this and not just, you know, the depth and breadth of the symptoms, but also to try to have some correlate that is actually 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 a good one and helps patients to identify with others,” Sanville told Yahoo Life. “But from a medical point of view, naming is important because it gives a little bit of truth that you wouldn’t otherwise have.”
Sanville says the inclusion of “sequelae” – which technically means “side effect of a disease” – helps to capture the wide range of symptoms experienced by long-distance travelers. “It is different from using ‘disease’; disease is much more discreet and we know it has a particular pathophysiology behind it, ”says Sanville. “Considering that a syndrome, or sequel, is something that is associated with – well, in this case, the SARS-CoV-2 virus. But we don’t know exactly what is causing it, and it’s probably a collection of a few different things going on. “
He hopes that the name will increase the legitimacy of this condition, which he currently serves at the rate of six new patients per week. “Giving him a name that doctors and nurses understand helps to give a little bit of reality too,” he says. “I had a patient the other day who complained that the doctor she consulted had dismissed her as neurotic. So – not that I necessarily have magical answers for all these patients – but it’s so common that it seems unlikely … it’s just in people’s brains . “
Equally fond of the new name is Dr. Ruwanthi Titano, a cardiology specialist from 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 the acute illness, there are these long-term sequelae that we are really seeing coming out of the den,” she says. Titano is particularly happy to hear about the NIH’s plans to study the disease, for 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 to recognize the syndrome – but what to do with it is still in the air “, says Titano.” There is a general approach that I take, but then I have to be very individualized for each patient … so we are adapting 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 move on and say, ‘We have these unanswered clinical questions.’ “
For people like Hornick, recognition and nomenclature are lagging behind. “It is incredibly comforting to know that what I have been going through for the past 10 months has an official name – and that significant research and resources are being devoted to addressing this,” said 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 still remain a mystery to doctors.”
Titano feels optimistic about this. “I’m very hopeful,” she says. “I think because, you know, the alternative is really heartbreaking and, because based on my experience, I have seen many patients improve. It has been very incremental and gradual … but I have seen patients improve, and I think we will continue to see that as we learn more and more. “
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