Some people with 'long Covid' say their symptoms ease after getting vaccine

Sheri Paulson had trouble getting out of bed months after her Covid-19 diagnosis.

The 53-year-old North Dakota resident and her family fell ill with the disease after attending a wedding in August. Paulson, an endurance athlete who runs a farm outside Fargo, would later suffer from fatigue, brain fog and an elevated heart rate that led doctors to advise her to stop exercising and attend cardiac rehab.

It wasn’t until about five days after she got her first Pfizer shot in February that she began to feel better.

“All of a sudden, I wasn’t taking naps after cardiac rehab anymore,” said Paulson, who also suffers from multiple sclerosis. “And then I started going for walks with my dog. Then I was like, ‘hmm, I think I’m going to run a little bit, too.'”

Some people who have suffered from lingering and often debilitating symptoms months after their initial bout with the virus say they are finding relief after getting vaccinated, puzzling health experts. Survivor Corps, a patient advocacy group for people with so-called long Covid, recently surveyed nearly 900 members and found 41% reported slight relief to full recovery shortly after getting the shots.

The World Health Organization estimates about 1 in 10 Covid patients experience persistently ill health 12 weeks after getting the virus. Researchers at the University of Washington published data in February that found a third of patients reported ongoing symptoms, including fatigue, shortness of breath and sleep disorders, that persisted for as long as nine months.

Symptoms of long Covid, which researchers are now calling Post-Acute Sequelae of Covid-19, or PASC, can develop well after the initial infection, and severity can range from mild to incapacitating, according to public health officials and health experts.

One of the largest global studies published in early January found that many people suffering from ongoing illness after infection are unable to return to work at full capacity six months later. The study surveyed more than 3,700 people ages 18 to 80 from 56 countries.

Diana Berrent, who founded Survivor Corps just over a year ago, suffered for months from long Covid before most of her symptoms resolved on their own last year. She said some members of the organization were at first hesitant to get vaccinated. The members feared that the reported side effects from the shots would cause their symptoms to get worse, she said.

“We were really expecting the worst” from the vaccines, she told CNBC. “You could have knocked me over with a feather when I found out that some people were starting to get better because it was just so outside what we were expecting.”

They are not alone. Facebook and Twitter are filled with stories from people who testify, to their own surprise, that their symptoms eased or even disappeared after getting a Covid vaccine.

The cause of the persistent symptoms is still not well understood by health experts.

Most studies have focused on people with a severe or fatal illness, not those who have recovered but still report lingering side effects, the so-called long-haulers. The virus is also relatively new — discovered a little over a year ago —so there isn’t any long-term data on it.

The National Institutes of Health launched an initiative in February to study long Covid and identify the causes and potential treatments. NIH Director Dr. Francis Collins said at the time that researchers hope to understand the underlying biological cause of the prolonged symptoms.

Doctors also don’t know why some patients with long Covid say they feel better after getting immunized. Figuring that out, experts say, could provide new insights into what’s behind the persistent symptoms as well as potential new treatments to fight it.

One theory, according to Yale immunologist Akiko Iwasaki, is that the vaccines help eliminate the so-called “viral reservoir,” where the virus may still be lingering in the body and causing chronic symptoms. The robust immune response induced by the vaccines may help clear any leftover virus, eliminating symptoms, said the scientist, who’s studying long Covid.

“That’s probably the most straightforward way” the vaccines could be helping people, she told CNBC in a phone interview. “If that’s the case, people will be cured of long Covid and that will be wonderful news.”

Iwasaki also hypothesized that Covid could be causing an autoimmune disease where immune cells mistakenly damage the body. If that’s the case, the vaccines could be providing “temporary relief” from symptoms and patients may eventually need to return for another dose, she said.

There is no long-term data of how people feel after the vaccine, she said. “But I suspect that if the second [hypothesis] is true, then it won’t be a long-lasting relief.”

Darren Brown, a 37-year-old physiotherapist based in the U.K., said his symptoms returned a few weeks after he received his first dose of the Pfizer vaccine.

Brown suffered from fatigue, restless sleep and impaired coordination for several months. He said felt his long Covid symptoms had completely lifted about three weeks after he got his first shot. But just days before his second dose, he felt his symptoms beginning to return.

“I started to notice I was getting more fatigued again,” he said.” The level that I thought I’d been able to push myself, the threshold, it felt like that had been reduced and I’d have nothing in me after returning to work. I just had to go to bed after a day at work.”

He feels better since his second dose but said he worries his symptoms might return again.

“I’m really cautious that this may not be long-lasting,” he said. “But I’m also really overwhelmed with excitement that it is lifted for now.”

Paulson, the North Dakota farmer, said she still has some symptoms, but the fatigue and brain fog are gone since getting her second shot on March 18. She added that she is grateful to be doing well, especially since many others died from the disease.

“There’s always things that put life in perspective for you and kind of put you back on your heels for a little bit,” said Paulson, who also works for a Massachusetts-based biotech company.

While the reports of relief from long Covid symptoms could be good news, they are still only anecdotal, said Dr. Paul Offit, a voting member of the FDA’s Vaccines and Related Biological Products Advisory Committee.

There still needs to be a formal trial to determine whether the vaccines are actually helping, he said.

Isaac Bogoch, an infectious disease specialist at the University of Toronto, echoed Offit’s remarks, saying he is skeptical but “open-minded.”

“This is an answerable question and I hope we have decent data that can confirm or refute this,” said Bogoch. “Otherwise it’s just a bunch of collective anecdotes”

Iwasaki told CNBC she plans to conduct a study, in collaboration with Survivor Corps, analyzing the blood samples of long Covid patients before and after getting vaccinated. She said he hopes they can explain the relief some patients experience after vaccination.

The study is still in the planning phases, she said, adding, “we are working very hard to get that up and running.”

“I have received numerous emails and DMs on Twitter about patient experiences … and I’m hearing every day from people who are feeling better from getting the vaccine,” she said. “From where I stand, it looks encouraging.”

–CNBC’s Noah Higgins-Dunn contributed to this report.