Emily Caffee, a physical therapist and lifelong athlete, cut her primary care provider slack for suggesting an antidepressant when she complained of fatigue, body aches and brain fog in the months after she became sick with Covid-19 in March 2020.
“She did a very thorough medical workup, and a lot of the lab values came back ‘normal’,” said Caffee, a 36-year-old Chicago resident. “We didn’t have very much to go off of in those early days. I think now we have so much more information” about long Covid, which was doctors’ eventual diagnosis for Caffee.
While there has indeed been significant research into long Covid over the past two years – including a few 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.
There is a need for more studies on long Covid featuring control groups, and people should continue to take precautions to avoid contracting Covid despite the lifting of restrictions and exhaustion with the pandemic, the experts say.
“How worried should people be? A lot more worried 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 behaving as if the pandemic was over. The problem with long Covid is it’s like the problem of hypertension or another illness that is in the future. We inherently discount the future, especially if the things we need to prevent future bad effects from coming are onerous, like wearing a mask.”
After having Covid, Caffee, who was a competitive rower, tried to exercise and return to work in acute care at Northwestern Memorial hospital. But she experienced “unrelenting and crushing” fatigue and anxiety. She struggled at her job and eventually had to take medical leave.
The work was “pretty physical, pretty cognitively demanding – doing chart reviews, working in the ICU – and it was just falling apart”, she said. “A lot of the cognitive tasks I just couldn’t handle.”
Caffee’s experience mirrors that of the other Covid long-haulers who, like her, participated in a study conducted at Northwestern, published on Tuesday in Annals of Clinical and Translational Neurology. Researchers found that patients continued to have neurological symptoms and fatigue, among other problems, almost 15 months after infection.
“We saw that although patients tended to improve slightly over time between the first and the second visit, they still had a lower quality of life compared to the normal US population as pertaining to their impression of cognition and impression of fatigue,” said Dr Igor Koralnik, Northwestern chief of neuro-infectious diseases and global neurology, who oversees the Neuro Covid-19 Clinic.
While Covid vaccines weren’t available when Caffee got sick, people who are vaccinated and experienced breakthrough infections did not have much less risk of long Covid compared with people who were not vaccinated, according to a study published on Thursday in Nature Medicine.
“Vaccines do protect some but not a whole lot 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 chief of research at the VA St Louis Health Care System.
But it’s still unclear how common long Covid is among people who contract 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 long Covid range from 10% to 30%.
Those numbers are often based on retrospective “studies that just look at a proportion of patients and then try to characterize based on very imprecise measures” who “experienced certain symptoms beyond a certain period of time, but they are not compared to any kind of control group”, said Nuzzo. “Getting accurate percentages of patients who experience these symptoms post infection can better help us target our resources in order to help people.”
It’s also not clear if long Covid is one unique thing, Nuzzo said.
“What we’re talking about as one condition is likely not one condition,” she said. “There’s a spectrum of symptoms that people experience after an infection.”
Lumping all those together “limits our ability to focus on how to protect or alleviate people who have been suffering”, Nuzzo added.
There has also not been enough research on what treatments are effective against long Covid, Emanuel said.
The medications of people with long Covid need to be compared with those of people who did not develop the condition, he said.
“Are we shooting in the dark – at least initially – until we understand better what the immunological defects are that are driving this? Absolutely. Do we have an alternative? Yes, we can just wait and wait and wait. That doesn’t seem to me to be the best idea,” Emanuel said.
While the infectious disease experts are calling for more research, that does not mean they are trying to diminish long-haulers’ suffering, Nuzzo said. Some people with the condition have expressed anguish that health care providers don’t take their symptoms seriously.
“I think anyone who has ever experienced a chronic illness probably has encountered that frustration at some point, feeling that they know there’s something not right, and they need help and they are not getting the kind of help and understanding from the medical community that they need. And so I think that is also playing out, on top of a list of questions for which science doesn’t have yet great answers,” Nuzzo said.
As providers and long-haulers wait for those answers, the best thing everyone else can do is to get vaccinated against Covid, the infectious disease experts said.
Emanuel also recommended taking steps such as installing HEPA filters; wearing N95 masks; and not dining in indoor restaurants.
“If there were no long Covid or one in 2,000 people got long Covid who had an acute infection”, Emanuel said he would not 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 summer 2021, she was able to gradually return to work and exercise. She is now back working full-time and feels “90 to 95% better”, she said.
She now treats people with long Covid, who present a range of issues, including balance problems and neuropathy in legs and feet.
“I’m definitely hoping to keep serving this community a bit more because it’s not going away,” she said. “I feel a good sense of validation to be offering what I can to help these patients.”