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EMily Caffee, a physical therapist and lifelong athlete, slacked off her GP for suggesting an antidepressant when she complained of fatigue, body aches and brain fog in the months after contracting Covid-19 in March 2020.
“She did a very thorough medical exam and many of the labs were ‘normal,'” said Caffee, a 36-year-old Chicago resident. “We didn’t have much to do in those early days. I think now we have so much more information’ about Long Covid, which was the doctors final diagnosis for Caffee.
While there has indeed been significant research into Long Covid over 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 it.
More studies on long Covid with control groups are needed and people should continue to take precautions to avoid contracting Covid despite the lifting of restrictions and the exhaustion from the pandemic, the experts say.
“How concerned should people be? Much more concerned than they are,” said Ezekiel Emanuel, a bioethicist at the University of Pennsylvania who was on Joe Biden’s Covid advisory team during the transition. “People are acting like the pandemic is over. The problem with long covid is that it’s like the problem of high blood pressure or some other disease that’s in the future. We inherently reject the future, especially when the things we need to do to prevent future bad effects are onerous, like wearing a mask.”
After Caffee, who was a competitive rower, had Covid, he attempted to exercise and return to work in acute care at Northwestern Memorial Hospital. But she experienced “relentless and crushing” fatigue and anxiety. She struggled at her job and eventually had to take a medical leave.
The work was “fairly physical, quite cognitively demanding — checking charts, working in the ICU — and it just fell apart,” she said. “I just couldn’t handle a lot of the cognitive tasks.”
Caffee’s experience mirrors that of other long-distance Covid drivers who, like her, took part in a Northwest-led study published Tuesday in the Annals of Clinical and Translational Neurology. The researchers found that the patients continued to experience neurological symptoms and fatigue, among other symptoms, almost 15 months after infection.
“We found that while patients improved slightly over time between the first and second visits, they still had a lower quality of life in terms of their impressions of cognition and fatigue compared to the general US population.” said Dr. Igor Koralnik, Northwestern Chief of Neuroinfectious Diseases and Global Neurology, who leads the Neuro Covid-19 Clinic.
While Covid vaccines were not available when Caffee fell ill, people who were vaccinated and experienced breakthrough infections did not have a much lower risk of long Covid compared to people who were not vaccinated, according to a study published Thursday in Nature Medicine.
“Vaccines protect some but not much from long Covid. The risk reduction is about 15%, and that’s really a very modest amount,” said Ziyad Al-Aly, clinical epidemiologist at Washington University in St. Louis and principal investigator at the VA St. Louis Health Care System.
But it’s still unclear how long Covid has been around among people who contract the virus, according to Emanuel and Jennifer Nuzzo, an epidemiologist at the Johns Hopkins Center for Health Security. Estimates of how many covid survivors go on to develop long covid range from 10% to 30%.
These numbers are often based on retrospective “studies that only look at a subset of patients and then attempt to characterize, based on very imprecise measures,” who “have experienced certain symptoms over a period of time, but they are not associated with any type of.” Control compared group,” Nuzzo said. “Getting accurate percentages of patients who develop these symptoms after infection can help us direct our resources to better serve people.”
It’s also not clear if Long Covid is a unique thing, Nuzzo said.
“What we call a condition is probably not a single condition,” she said. “There’s a spectrum of symptoms that people experience after infection.”
Lumping all of this together “limits our ability to focus on how to protect or alleviate people who are suffering,” Nuzzo added.
There has also not been enough research into which treatments are effective against long Covid, said Emanuel.
The medications of people with long Covid need to be compared to those of people who have not developed the disease, he said.
“Are we shooting in the dark – at least initially – until we better understand what the immunological defects are that drive this?” Absolutely. Do we have an alternative? Yes, we can just 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, it doesn’t mean they’re trying to reduce the suffering of long-distance drivers, Nuzzo said. Some people with this condition have expressed concern that healthcare providers do not take their symptoms seriously.
“I think anyone who has ever experienced a chronic illness has probably encountered this frustration and felt like they know something is wrong and they need help and not the kind of help and understanding that they need the medical community gets what he gets need. And I think that’s playing out, too, on top of a list of questions that science doesn’t have great answers for yet,” Nuzzo said.
While suppliers and long-distance drivers wait for those answers, the best thing everyone else can do is get vaccinated against Covid, the infectious disease experts said.
Emanuel also recommended measures such as installing HEPA filters; wearing N95 masks; and do not dine indoors in restaurants.
“If there weren’t a long covid or one in 2,000 people who had an acute infection had a long covid,” Emanuel said, he wouldn’t be concerned about masking. But the virus is threatening “a very serious complication,” long Covid, he said.
Caffee, the physical therapist, tried to recover by making diet changes, meditating, and doing restorative yoga.
It worked.
At the end of summer 2021 she was gradually able to work and do sports again. She’s back to full-time work now and feels “90-95% better,” she said.
She now treats people with long Covid who have a range of issues including balance issues and neuropathy in the legs and feet.
“I’m definitely hoping to be able to serve that community a little bit more because it’s not going away,” she said. “I feel good about the validation that I’m offering whatever I can to help these patients.”
