What do long haulers experience after getting the COVID vaccine?
Early literature shows that about a third of patients with long COVID feel better after the vaccine.
According to Survivor Corps, which describes itself as a grassroots movement for COVID-survivors, of the 931 long haulers who participated in a survey, 387 of them reported the vaccine alleviated their long COVID symptoms.
In a preliminary survey by UK advocacy group LongCovidSOS, the University of Exeter, and the University of Kent, 57% of participants said they experienced at least some improvement in symptoms. Fewer than 7% experienced only deteriorating symptoms. Though all vaccines showed benefits, they found the Moderna vaccine had the most positive results.
Galiatsatos said among his Johns Hopkins patients, about 50% experience improvements and the other 50% don’t notice any changes.
Dr. Benjamin Abramoff, head of the University of Pennsylvania’s Post-COVID Assessment and Recovery Clinic, said he’s observed similar trends among his long COVID patients, with about a third of patients experiencing improvements and the remainder not noticing any changes.
Abramoff said only a small number of his patients, fewer than 10%, experience persistent worsening of their long COVID symptoms after getting the vaccine. Some patients note an improvement after getting the vaccine, but two or three weeks later they begin to experience long COVID symptoms again, he added.
“It’s disappointing, because some patients feel better and are excited about that, and they kind of regress back to where they were before,” Abramoff said.
Griffin said some people do experience a worsening of symptoms after the vaccine, but that it’s rare.
“And it’s sort of hard to tease out. Is that just the variable course of long COVID, or is that really triggered by the vaccine?” he said.
Which patients improve after the vaccine and which don’t depends on the type of long COVID symptoms they had in the first place, the physicians said.
Griffin and Galiatsatos said that patients who had long stays in the ICU, patients with pulmonary scarring, or interstitial lung disease, do not get much of a response to the vaccine. Neither do patients with physical ailments such as breathlessness or muscle aches.
People who weren’t hospitalized with COVID and have symptoms such as brain fog, loss of smell and taste, or fatigue are among the 30% to 40% of long-haulers who show an improvement after the vaccine, they said.
“‘I have this fatigue I can’t figure out,’ ‘I have these chills I can’t figure out,’ ‘I feel my heart racing, and we can’t figure it out.’ Those non-specific symptoms seem to resolve after the vaccine. They get the vaccine and say, ‘Hey, doc, I feel great,’” Galiatsatos said.
Abramoff said he’s also observed that patients who have had long COVID symptoms for only a few months seem to feel better after getting the vaccine than those who have been sick for a long time.
“I don’t know if that’s just that they were improving anyways and this is kind of a jump-start, or they’ve been feeling sick for so long and it’s hard to overcome that,” he said.
Why do some long-haulers feel better after vaccination?
The physicians said there’s no good answer to that question. But again, there are some theories, they said.
One is that if there’s a persistent infection causing long-haulers to feel sick, then the vaccine could be helping their immune system finally clear the virus.
“We had a woman in the ICU recently, a few weeks ago, and she’d been sick with COVID for six months. And she was vaccinated, and her viral testing about seven to eight days later was negative, continued to be negative, and after months in the hospital, she was discharged. I checked on her today, and she feels much better and is actually going home,” Griffin said.
Another theory is that the vaccine might rev up a person’s immune system and shift the patient back into a steady state of equilibrium.
“We’ve seen bad viruses towards the lungs cause consequences for a time, and they usually self-resolve. Keep in mind, though, what we’ve never had in history is, you had a bad virus, it impacted you for some time, now we’re going to give you a vaccine for it. So this is all new to us, like we have a vaccine for the infection that caused you all those dire consequences. We are learning in real time with our patients as well,” Galiatsatos said.
Should long-haulers only get one shot?
There’s some early data that shows people who previously had COVID might only need one dose of the vaccine. Research participants with a previous natural infection had a maximal immune response after one dose, based on both strong antibody and memory B cell responses.
However, physicians say long-haulers should still get their second doses for now. Griffin and Abramoff say that of the 30% to 40% of long-haulers who do improve after the vaccine, many of them don’t notice improvements until after the second shot.
Galiatsatos added that the antibodies of people with milder cases of COVID-19 might not last as long as those with severe cases of the virus. Antibodies also aren’t the only measure of building an immune response to COVID-19, Griffin said. T cells don’t prevent infection like antibodies do. But T cells do work once a virus starts to infect a few cells, and should be able to eliminate the virus from those cells.
“So we do know that if you get a single vaccine dose of mRNA after a natural infection, that you get high antibody levels. We don’t know how that translates into protection against all the variants that we’re now seeing, particularly the Delta variant,” Griffin said, referring to the B.1.617.2 strain of the virus.
Sometimes, the doctors said, people may not know they’re long-haulers until after they’re fully vaccinated.
“A colleague I work with, a physician, he got his first dose, and it was actually about three weeks after the second dose he approached me, and said, ‘I didn’t realize, but I’ve had insomnia for the last year since I got COVID. Now it’s gone.’ And he had not identified as a long COVID person, just sort of thinking he had developed insomnia over the last year,” Griffin said.