In the year before the omicron variant began spreading in the United States, an estimated one-third of people aged 18 to 45 were infected with COVID-19. Just three months later, that number had doubled, and I was one of the first to contract the coronavirus.
When I finish the fall semester at Cornell in December 2021, I will be one of the first to receive an omicron. The day I received my positive test result, I knew it was coming. I have a sore throat, cough, and body aches. For the next few days, I was so tired that I slept for most of the day, trying to finish my final exams while helping my college daily report on the epidemic. A few days later, after taking all the vitamins, supplements, and over-the-counter medicines I could get my hands on, I tried to get back to my normal routine, starting with exercising on Zoom. I find myself needing to stop every few minutes to catch my breath.
time flies. I started to exhaust my YouTube workout list and I started to feel better, but I never really got to 100%. After six months, my friends and family stopped asking, “Are you feeling better?” In some ways I did.But, when I’m more out of breath than before every time I go to work out, or I’m often hitting a wall at 3pm, I wonder: Do I belong An estimated one in five people Who has COVID in the US?
Questions that seem simple at first are actually more complex than yes or no. There are no biological tests — no swabs or blood tests — to say someone has long-term Covid-19. Doctors and public health organizations do not have a uniform definition of the condition.
give it a name
Although the disease caused by the novel coronavirus is named COVID-19 February 2020, Months later, long-term COVID surfaced as a label On Twitter when Elisa Perego started using the word in her tweets. The archaeology researcher, who has become a longtime COVID advocate, first fell ill in the Italian region of Lombardy in late winter 2020. Three months later, she relapsed – her blood oxygen levels started to drop again and she may have a small blood clot in her lung. This is not the same as what Perego sees in the news for COVID-19.
“To me, the idea of long-term COVID is to redefine COVID,” she told me via email, as persistent symptoms made it difficult to talk for long periods of time. Not only did the word give a name to her experience, but it began to unite the growing number of those who are living with COVID-19 and can’t seem to get over the aftermath.
“Italy is talking about a very long period of positive tests. A grassroots movement of people who have not recovered from COVID is picking up quickly on Twitter and other media,” she said. “So I think hashtags and long COVID names might be a way to connect with this growing community.”
Since then, other terms have been used: acute sequelae of SARS CoV-2 infection or PASC, acute sequelae of COVID-19 and Post-COVID ConditionsUsing the last one, the US Centers for Disease Control and Prevention writes broadly: “Post-COVID-19 disease is a set of new, recurring, or persistent health problems that people experience after first contracting the virus that causes COVID-19.”
When it comes to long-term COVID, the only clear distinction that health professionals seem to agree on is that it is the onset or change of symptoms after being infected with the coronavirus for a period of time. But there is no general agreement on how long after and what those symptoms are.
For now, experts say, that’s probably for the best.
David Putrino, a neuroscientist at the Icahn School of Medicine at Mount Sinai in New York City, said a broad definition could help people with long-term Covid-19 infections recognize that they are infected and receive the care they need. It could also help historically long-excluded COVID patients get the correct diagnosis who might otherwise be written off and labeled psychosomatic.
However, even with a broad definition, people may not know they have it. In a recent recruiting effort for a long-term COVID clinical trial, Putrino found that about half of those who reported they had “completely recovered” failed his screening for post-COVID illness because they still had lingering symptoms.
Many of these people fell into a similar camp to me: they weren’t weak, but they “slowed down.” Similar to me, Putrino says, many of them say they’ve made a full recovery, but one symptom doesn’t seem to go away — like difficulty exercising or needing to fall asleep much earlier than in the past or noticing that they need an extra coffee in the afternoon .
When COVID-19 gets longer
A key issue in understanding who has prolonged COVID is determining when acute COVID ends and when prolonged COVID begins. There are differences there too.Centers for Disease Control and Prevention in Four weeks after infectionwhile the World Health Organization says close to 12 weeks. National Institutes of Health, in Recruited for its active study of long-term COVID-19defined “post-acute” as the onset of 30 days after infection in children, but did not define a window for adults.
Too little time or too long is risky. Too short, and doctors may include people who have just experienced a particularly prolonged acute COVID-19 attack. They are likely to recover regardless of treatment, so including them makes it difficult to determine whether long-term COVID treatment is effective. For his work, Putrino is firmly on the “WHO team” as he says some people are still dealing with acute symptoms of SARS-CoV-2 infection four weeks later.
“We don’t want to promote the idea that a certain percentage of long-term COVID patients will recover spontaneously,” he said. “That’s not the case. I think the people who get sick after 4 weeks and then go on to recover without any intervention are just the people who still have COVID and eventually recover.”
But starting too far can delay people getting care.
That’s why Perego favors a four-week time frame so people can seek care sooner. But researchers may want to track changes in a person’s condition over longer periods of time, she said.
“Clinically, I would like to get support as early as possible. The timing of disease progression may change in different patients,” she said. “Vaccinations and new variants may change the way the disease develops. But I don’t like having people without intensive care wait for the moment they match a specific clinical case definition, which can be an artificial construct and quite delayed.”
In many ways, defining a long COVID is like trying to hit a moving target, but a better understanding of how COVID changes over time will help researchers “figure out exactly what it is and maybe it’s not,” Josh Fessel said, senior clinical advisor at the National Center for the Advancement of Translational Science, part of the National Institutes of Health. In addition to tracking time, another approach is to track symptoms.
Symptoms of long-term COVID
I had what all the experts I spoke to thought were the most common symptoms – fatigue and shortness of breath.but others have trouble thinking or concentrating, severe heart, joint, or muscle pain To name a few (Serial Number: 2/2/22). While this long list of potential symptoms is spread as widely as possible, it also produces a “diagnosis of exclusion,” says Emily Pfaff, a clinical informatics scientist at the University of North Carolina at Chapel Hill. In order for a patient to know that they have been infected with the new coronavirus for a long time, they must first prove that there is no other cause of their symptoms.
“It’s to make sure we don’t confuse long-term COVID with other things, but what can be done is risk patients with this diagnosis, they’re trying to match their symptoms and their doctors and providers are trying to correlate them with various diseases. Match, just to rule out those diseases and say ‘yes, maybe it’s long-term COVID,'” she said.
What makes long-term COVID difficult to rule out and home in is that long-term COVID has a taste. It does not have the same symptoms and may not be caused by everyone with the same disease. “We envisioned that there are at least seven different mechanisms for long COVID,” said Joan Soriano, a medical epidemiologist who helped write the WHO definition of long COVID. “It’s akin to chronic fatigue syndrome or intensive care unit syndrome. So any definition of long-term COVID is not going to be simple.”
The definition of long-term COVID must cover people who may still have the virus circulating in their body, people who may have autoimmune problems after infection, people with micro-clots in their blood, and maybe people like me who have an uneasy feeling of recovery normal. When researchers try to understand long COVID and how to treat it, they need to distinguish between these different flavors, called endotypes, Putrino said. Different flavors require different treatments. Medications such as antiviral drugs may only be effective for people whose long-term symptoms of COVID are caused by the persistence of the virus. Blood thinners don’t work for them, but they can help those with microclots.
One thing that could help group long-term COVID flavors and identify how symptoms persist in large numbers of patients, Soriano said, is artificial intelligence. That’s what Pfaff at UNC is doing right now. She’s creating a machine-learning algorithm that can look at patients’ health records and predict whether they’ll be chronically infected with the coronavirus. “It’s never going to be 100 percent,” she said. But her algorithms are starting to accurately predict who will have it, and she’s starting to use it to figure out what tastes they might have.
However, she said, data cannot operate in a vacuum. Researchers need information from people like myself and many others in order to have a firm grasp on how long COVID is and how to treat it. Merging hospital data with patient survey data is the only way to create a definition, Pfaff said.
I’m still not sure what my situation is. A few weeks ago, I was ashamed to even mention that my thoughts were long-term Covid-19. Long COVID isn’t really something that comes up in my daily conversations, especially as an active 22-year-old. That quickly changed when Putrino spontaneously described a class of people who couldn’t get back to exercising or needed an extra cup of coffee to keep up with their pre-COVID pace. This describes how I’ve felt when I’ve been serving for months. Putrino, Pfaff and Fessel agreed that I usually belong to a large group of people with long-term COVID, and Fessel told me that if I applied to participate in an NIH clinical trial, he wouldn’t blink.
Still, I’m having a hard time using the word.I haven `t been there unemployment as Perego and Thousands of others have. While I don’t like to say that I have been chronically infected with Covid-19 because it has disrupted the lives of more people than myself, it may be important to define the broad experience it has led to. Until we have a solid test for this condition, it’s important that people share their personal experiences.