EMily Caffee, a physical therapist and lifelong athlete, slammed her primary care provider for suggesting an antidepressant when she complained of fatigue, body aches and brain fog in the months after falling ill with Covid-19 in March 2020.
“She did a very thorough medical exam and many of the lab values came back ‘normal,'” said Caffee, a 36-year-old resident of Chicago. “In those early days, we didn’t have much to rely on. I think we now 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-term 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 condition’s prevalence, what causes it, and how. treat it.
There is a need for more studies of long-term Covid with control groups, and people should continue to take precautions to avoid contracting Covid, despite the lifting of restrictions and exhaustion from the pandemic, 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 part of Joe Biden’s Covid advisory team during the transition. “People are behaving as if the pandemic is over. The problem with long-term Covid is that it resembles the problem of hypertension or any other disease that lies in the future. We inherently discount the future, especially if the things we need to avoid future ill effects are heavy, like wearing a mask.
After dealing with Covid, Caffee, who was a competitive rower, tried to practice and return to work in acute care at Northwestern Memorial Hospital. But she experienced “relentless and crushing” fatigue and anxiety. She struggled with her job and eventually had to take medical leave.
The work was “pretty physical, quite cognitively demanding — doing map reviews, working in the ICU — and it just fell apart,” she said. “A lot of the cognitive tasks I just couldn’t handle.”
Caffee’s experience mirrors that of the other Covid lung haulers who, like her, participated in a study at Northwestern, published Tuesday in Annals of Clinical and Translational Neurology. Researchers found that nearly 15 months after infection, patients still had neurological symptoms and fatigue, among other problems.
“We found that although patients tended to improve somewhat 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 impression. from fatigue,” said Dr. Igor Koralnik, Northwestern head of neuroinfectious diseases and global neurology, who oversees the Neuro Covid-19 clinic.
While there were no Covid vaccines available when Caffee became ill, people who were vaccinated and experienced breakthrough infections were not much less at risk of long-term Covid compared to people who had not been vaccinated, according to a study published Thursday in Nature Medicine.
“Vaccines protect some, but not a lot, from long-term Covid. The risk reduction is about 15%, which is a really modest amount,” said Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis and chief of research at the VA St. Louis Health Care System.
But it’s still unclear how common Covid is in 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 develop a long Covid period range from 10% to 30%.
Those numbers are often based on retrospective “studies that look at only a subset of patients and then try to characterize based on very inaccurate measurements” who “experienced certain symptoms over a period of time, but they are not compared to any kind of control group,” Nuzzo said. “Getting accurate percentages of patients experiencing these symptoms after infection may help us better target our resources to help people.”
It’s also not clear whether long Covid is something unique, Nuzzo said.
“What we’re talking about as one condition is probably not one condition,” she said. “There is a spectrum of symptoms that people experience after an infection.”
Putting all these things together “limits our ability to focus on protecting or relieving people who have suffered,” Nuzzo added.
Also, not enough research has been done on which treatments are effective against long-term Covid, Emanuel said.
The medicines of people with long-term Covid should be compared with those of people who have not developed the condition, he said.
“Are we going in the dark – at least initially – until we better understand the immunological defects that cause this? Absolutely. Do we have an alternative? Yes, we can just wait and wait and wait. I don’t think that’s the best idea said Emmanuel.
While the infectious disease experts are calling for more research, that doesn’t mean they’re trying to reduce the suffering of long-haul refugees, Nuzzo said. Some people with the condition have expressed fears that health care providers are not taking their symptoms seriously.
“I think anyone who’s ever had a chronic illness has probably had that frustration at some point, the feeling that they know something isn’t right, and they need help and they’re not getting the kind of help and understanding from the medical community that they need, and so I think that also plays a role, on top of a list of questions that science doesn’t have good answers to yet,” Nuzzo said.
While providers and long-haulers await those answers, the best thing anyone can do is get vaccinated against Covid, the infectious disease experts say.
Emanuel also recommended taking steps such as installing HEPA filters; wearing N95 masks; and do not dine indoors in restaurants.
“If there was no long-term Covid or one in 2,000 people got long-term 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 recover by making dietary changes, meditating, and doing restorative yoga.
At the end of the summer of 2021, she was gradually able to return to work and sports. She is now working full time again and is feeling “90 to 95% better,” she said.
She now treats people with long-term Covid, who present a range of problems, including balance problems and neuropathy in the legs and feet.
“I definitely hope to be able to serve this community a little bit more because it’s not going away,” she said. “I feel a good sense of validation for offering what I can to help these patients.”