meMily Caffee, a physical therapist and lifelong athlete, brushed off her primary care provider for suggesting an antidepressant when she complained of fatigue, body aches and mental fogginess in the months after she fell ill with COVID-19 in March. of 2020.
“He did a very thorough medical exam and a lot of the lab values came back ‘normal,'” said Caffee, a 36-year-old Chicago resident. “We didn’t have much to go on in those early days. I think we have a lot more information now” about prolonged covid, which was the doctors’ final diagnosis for Caffee.
While there has been significant research into prolonged Covid in the past two years, including some studies published last week, some infectious disease experts say we still don’t know enough about the prevalence of the condition, what causes it and how to treat it.
More studies of prolonged covid with control groups are needed, and people should continue to take precautions to avoid contracting covid despite the lifting of restrictions and exhaustion from the pandemic, experts say.
“How worried should people be? Much more concerned than they are,” said Ezekiel Emanuel, a bioethicist at the University of Pennsylvania who was part of Joe Biden’s advisory team on Covid during the transition. “People are behaving as if the pandemic is over. The problem with the long Covid is like the problem of hypertension or another disease that is in the future. We inherently discount the future, especially if the things we need to avoid future negative effects are onerous, like wearing a mask.”
After having Covid, Caffee, who was a competitive rower, tried to exercise and return to work in intensive care at Northwestern Memorial hospital. But he experienced “relentless and crushing” fatigue and anxiety. He had problems at his job and eventually had to take medical leave.
The job was “pretty physical, pretty cognitively demanding (doing chart reviews, working in the ICU) and it was just falling apart,” he said. “A lot of the cognitive tasks I just couldn’t handle.”
Caffee’s experience mirrors that of other long-distance Covid travelers who, like her, participated in a study conducted at Northwestern, published Tuesday in the Annals of Clinical and Translational Neurology. The researchers found that patients continued to have neurological symptoms and fatigue, among other problems, nearly 15 months after infection.
“We saw that although patients tended to improve slightly over time between the first and second visits, they still had a lower quality of life compared to the normal US population in terms of their impression of cognition and fatigue,” said Dr. Igor. Koralnik, chief of neuroinfectious diseases and global neurology at Northwestern, who oversees the Neuro Covid-19 Clinic.
While Covid vaccines weren’t available when Caffee got sick, people who got vaccinated and experienced advanced infections didn’t have much less risk of getting prolonged Covid compared with people who didn’t get vaccinated, according to a study published Thursday. in Nature Medicine.
“Vaccines protect some, but not much, from prolonged covid. The risk reduction is about 15%, and that’s really a very modest amount,” said Ziyad Al-Aly, a clinical epidemiologist at Washington University in St Louis and chief of research for the VA St Louis Health Care System.
But it’s not yet clear how common the time of Covid is among people who get the virus, according to Emanuel and Jennifer Nuzzo, an epidemiologist at the Johns Hopkins Center for Health Security. Estimates on how many Covid survivors develop prolonged Covid range from 10% to 30%.
Those numbers are often based on “retrospective studies that only look at a proportion of patients and then try to characterize based on very imprecise measures” that they “experienced certain symptoms beyond a certain period of time, but are not compared to any type of control”. group,” Nuzzo said. “Getting accurate percentages of patients experiencing these symptoms after infection can help us better target our resources to help people.”
It’s also unclear whether prolonged Covid is something unique, Nuzzo said.
“What we’re talking about as a condition is probably not a condition,” he said. “There is a spectrum of symptoms that people experience after an infection.”
Lumping them all together “limits our ability to focus on how to protect or relieve people who have been suffering,” Nuzzo added.
There also hasn’t been enough research on what treatments are effective against prolonged covid, Emanuel said.
The medications of people with prolonged Covid should be compared with those of people who did not develop the condition, he said.
“Are we filming in the dark, at least initially, until we better understand what the immunological defects are that are driving this? Absolutely. Do we have an alternative? Yes, we can wait and wait and wait. That doesn’t seem like the best idea to me,” Emanuel said.
While infectious disease experts are calling for more research, that doesn’t mean they’re trying to lessen the suffering of long-haul shippers, Nuzzo said. Some people with the condition have expressed distress that their symptoms are not taken seriously by health care providers.
“I think anyone who has experienced a chronic illness has probably run into that frustration at some point, feeling like they know something is not right, that they need help, and that they are not getting the kind of help and understanding from the medical community that they need. . need. And I think that’s developing too, plus a list of questions that science doesn’t have good answers to yet,” Nuzzo said.
While suppliers and long-haul carriers wait for those answers, the best thing everyone else can do is get vaccinated against Covid, infectious disease experts said.
Emanuel also recommended taking steps like installing HEPA filters; wear N95 masks; and do not dine in restaurants inside.
“If there wasn’t a long Covid or one in 2,000 people had a long Covid who had an acute infection,” Emanuel said he wouldn’t worry about masking. But the virus poses a threat “of a very serious complication,” long Covid, he said.
Caffee, the physical therapist, tried to get back on his feet by making dietary changes, meditating and doing restorative yoga.
In the late summer of 2021, he was able to gradually return to work and exercise. She is now back to work full time and feels “90 to 95% better,” she said.
He now treats people with prolonged covid, who have a range of problems, including balance problems and neuropathy in the legs and feet.
“I definitely hope to keep serving this community a little longer because it’s not going to go away,” he said. “I feel a good sense of validation in offering what I can to help these patients.”