Hair loss, vision problems, extreme fatigue, and nausea.
For the 6.7 million Americans already infected with COVID-19, the realization of what recovery might entail is troubling. The median time from onset to clinical recovery ranges from two to six weeks, but for those experiencing symptoms months after infection, questions are raised.
Since contracting the virus half a year ago, Lois Pryce from the UK has been “really infuriated,” she shared with The Globe Post.
Pryce began feeling exhausted and her limbs began to ache two days after returning from Spain in March. “A five-minute phone conversation had caused my lungs to seize. My chest felt as if it was being crushed. I couldn’t get any air. I couldn’t speak,” she recalled in an article.
Pryce is not alone. She is among an increasing number of survivors known as “long-haulers” who experience persistent, debilitating symptoms but are not considered sick enough to be hospitalized.
What’s more, the group shares a common conception that their symptoms are blatantly dismissed by medical professionals.
A study by the American Academy of Neurology found that more than half of COVID-19 patients presented some form of neurological symptom such as short-term memory loss or sensitivity to lights and sounds. Yet, these symptoms, often described as shortness of breath or tingling sensations, are frequently labeled as psychological complaints.
“I’ve been told I’m anxious by three different doctors,” Pryce said. “I wasn’t collapsing or being rushed to the hospital, so they told me I was anxious.”
However, Pryce has been struggling with coronavirus symptoms for six months and says she can tell the difference. “I’m 47 years old and I’ve lived a lot. I know the difference between anxious breathing and healthy breathing,” she said. “Long-term effects impact people’s lives and it is a huge public health issue if you’ve already got people who can’t function fully.”
Long-Term Results of COVID-19
On July 24, The Center for Disease Control and Prevention (CDC) released a report outlining the proportion of COVID-19 patients who had not returned to their usual state of health within the expected time frame.
In comparison to influenza, COVID-19 outpatients are 60 percent more likely not to return to baseline health regardless of age or chronic medical condition. However, the CDC’s report of long-term symptoms is not backed by medical professionals who rejected profoundly debilitating symptoms at the time.
“I don’t think doctors are interested in listening; they’re comfortable with what they’ve learned in textbooks so they’re not trained to listen, understand, and respect patients,” Pryce said.
On her own, Pryce has resorted to acupuncture to alleviate her chronic fatigue syndrome and 20 to 30 minutes of deep breathing exercises to strengthen her lungs.
SARS-Cov-2, the virus that causes COVID-19, avails little information in terms of long-term outcomes and recovery in COVID-19 patients after its discovery in January. Yet, some similarities have been found in infections caused by other viruses.
Studies examining the long-term results of other coronaviruses such as SARS and MERS found similar symptoms. According to an August article by researcher Hallie C. Prescott and Dr. Timothy D. Girard, a meta-analysis “reported high rates of post-traumatic stress disorder, depression, and anxiety at six months following illness, as well as pulmonary dysfunction, reduced exercise tolerance, and reduced health-related quality of life.”
Long-Haulers Support Groups
“With SARS, many people had post-viral symptoms but unfortunately we didn’t connect the dots [between long-term symptoms] and COVID-19 patients,” social epidemiologist Dr. Margot Gage Witvliet told The Globe Post. “We’re there now.”
Witlvliet, who was hospitalized with COVID-19 in March and has since found support among other long haulers, said knowing she wasn’t alone “helped tremendously.” A growing number of long-haulers have connected through support groups such as Body Politic and Facebook’s Survivor Corps to find commonality and recognition.
“When I would Google [COVID-19 recovery], it would say after 14, 20 days the virus should be just fine. Every time I got to that new milestone where I should have been better, that was not the case,” Witvliet said. “Finding that group and seeing so many people like me really helped because, at that point, it wasn’t widely known that this would be a possibility with COVID-19.”
“You realize you are not a unicorn. Everyone’s story is unique to them but once you put it all together, you realize you’re not so unique anymore. When you don’t know that, you start feeling isolated and helpless.”
Like Pryce, Witlvliet’s journey with COVID-19 was never straightforward.
Following her return from Europe in March, the young, healthy, nonsmoker suddenly became weak overnight. Her initial symptoms did not fit into the early descriptions of the disease and having no fever, doctors were uncertain she had COVID-19.
Witvliet was one of the first people in Texas to be administered a non-FDA-approved test and a false negative furthered her frustration of not knowing. She was diagnosed with a respiratory illness and doctors prescribed an antibiotic and a low dosage of anti-inflammatory medication usually targeted to arthritis patients.
At the end of the month, Witvliet suffered a seizure. In the emergency room, doctors told her she did, in fact, have coronavirus. “After the seizure, I [laid] in my bedroom for weeks with the curtains drawn, because light and sound had started to hurt,” she wrote.
This was when Witvliet found common ground with long-haulers, who shared her frustration of doctors dismissing debilitating symptoms.
Five months later, her symptoms of ringing ears and chest pain are still present.
Coronavirus and T Cells
“The next step is learning more about T cells,” which are instrumental in immune response, Witvliet said. “Doctors look at T cells in HIV patients but T cells have shown to have a great importance in COVID-19 patients too.”
The efficacy of antibody tests and the tendency to deliver false negatives has shifted the focus after many COVID-19 survivors reported having no antibodies. In fact, data found T cell responses to influence immunity and even provide an explanation as to why some patients suffer extraneous symptoms compared to others.
“By getting your T cells measured, it won’t change anything in terms of your status or treatment plan, but perhaps it can bring insight to how your body is doing, as a way to monitor it,” Witvliet said.
COVID-19 long-haulers present an opportunity to examine the broader implications of viruses, such as symptom duration. Importantly, directing care, public health announcements, and reducing transmission will invariably be affected too.
“The medical community now knows that we exist. People who get sick now will have a much easier time than some of what the first people had to go through, like me. They just caught up with the knowledge,” Witvliet concluded.
Ultimately, long-haulers want to resume normalcy but persistent fatigue, brain fog, and headaches leave many spending “the majority of [their] day resting,” like Witvliet. The combined burden of long-term illness and job insecurity leaves many sufferers resorting to online support groups, where survivors feel recognized in their collective recovery.