As pandemic wanes, long-haul Covid still drains patients and confuses doctors

Elongtime physiotherapist and athlete mily Caffee gave her primary care provider a hard time for suggesting an antidepressant when she complained of fatigue, body aches and brain fog in the months after her illness with Covid-19 in March 2020.

“She did a very thorough medical workup and many lab values ​​came back ‘normal,'” said Caffee, a 36-year-old Chicago resident. “We didn’t have much to do back then. I think we now have a lot more information” about the long Covid, which was the 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 disease, its causes and how to treat it.

There is a need for more long-Covid studies with control groups, and people should continue to take precautions to avoid contracting Covid despite lifting restrictions and becoming exhausted with the pandemic, say the experts.

“How worried should people be? Much more worried than them,” said Ezekiel Emanuel, a University of Pennsylvania bioethicist who was on Joe Biden’s Covid advisory team during the transition. “People are behaving as if the pandemic is over. The problem with the long Covid is that it’s like the problem of hypertension or another disease that is in the future. We inherently neglect the future, especially if the things we need to prevent future adverse effects from happening 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 “relentless and overwhelming” fatigue and anxiety. She struggled at her job and eventually had to take sick leave.

Emily Caffee in a rowboat.
Emily Caffee is a competitive rower but was taken down by a long Covid. Photograph: Courtesy of Emily Caffee

The job was “quite physical, quite cognitively demanding — doing chart reviews, working in intensive care — and it was falling apart,” she said. “A lot of cognitive tasks that I just couldn’t handle.”

Caffee’s experience mirrors that of other Covid long-haulers who, like her, participated in a study conducted at Northwestern, published Tuesday in Annals of Clinical and Translational Neurology. Researchers found that patients continued to experience neurological symptoms and fatigue, among other issues, nearly 15 months after infection.

“We saw that even though patients tended to improve slightly over time between the first and second visit, they still had a lower quality of life than the normal US population in terms of their perception of cognition and their sense of fatigue,” said Dr. Igor. Koralnik, the northwest’s chief of neuro-infectious diseases and global neurology, who oversees the Neuro Covid-19 Clinic.

While Covid vaccines weren’t available when Caffee fell ill, people who were vaccinated and had breakthrough infections didn’t have much less risk of long Covid than unvaccinated people, according to a study published Thursday in natural medicine.

“Vaccines protect some but not many from the 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 VA St Louis. Health System of care.

But it’s still unclear how long Covid has been common among people who contract the virus, according to Emanuel and Jennifer Nuzzo, an epidemiologist at the Johns Hopkins Center for Health Security. Estimates of the number of Covid survivors develop a long range of Covid from 10% to 30%.

These numbers are often based on “retrospective studies that simply look at a proportion of patients and then attempt to characterize based on very imprecise measurements” who “have experienced certain symptoms beyond a certain period of time, but they are not compared to any kind of control group,” Nuzzo said. “Getting accurate percentages of patients who show these symptoms after infection can better help us target our resources to help people.”

It’s also unclear if the long Covid is a one-off thing, Nuzzo said.

“What we’re talking about as a condition probably isn’t a condition,” she said. “There is a spectrum of symptoms that people experience after an infection.”

Putting all of these together “limits our ability to focus on how to protect or relieve people who are suffering,” Nuzzo added.

Nor has there been enough research into effective treatments for long Covid, Emanuel said.

Medications for people with long-term Covid should be compared to those for people who have not developed the disease, he said.

“Are we turning in the dark – at least initially – until we better understand what immunological defects are driving this? Absolutely. Do we have an alternative? Yes, we can just wait and wait and wait. That doesn’t sound 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-haulers, Nuzzo said. Some people with the disease have expressed anguish that healthcare providers aren’t taking their symptoms seriously.

“I think anyone who has ever suffered from a chronic illness has probably encountered this frustration at some point, feeling that there is something wrong, and that they need help and that they don’t. isn’t getting the kind of help and understanding from the medical community that he needs. And so I think that plays out as well, on top of a list of questions that science doesn’t yet have good answers for,” Nuzzo said.

Emily Caffee, right, with a colleague at Northwestern Memorial Hospital.
Emily Caffee, right, with a colleague at Northwestern Memorial Hospital. Photograph: Courtesy of Emily Caffee

While suppliers and long haulers await those answers, the best thing anyone can do is get a Covid shot, infectious disease experts have said.

Emanuel also recommended taking measures such as installing HEPA filters; wear N95 masks; and do not eat in restaurants inside.

“If there was no long Covid or one in 2,000 people had long Covid who had an acute infection,” Emanuel said he wouldn’t be worried 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.

It worked.

At the end of the summer of 2021, she was able to gradually resume work and exercise. She has now returned to full-time work and feels “90-95% better,” she said.

She now treats people with long-term Covid, who have a range of problems including balance problems and neuropathy in the legs and feet.

“I really hope to continue to serve this community a bit more, because it’s not going away,” she said. “I feel a good sense of validation to offer what I can to help these patients.”

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