What Long-Haulers Should Know About Getting The Coronavirus Vaccine

Michelle Chason, a reiki master in Tallahassee, Florida, was diagnosed with COVID-19 on June 15, 2020. First, she developed dry mouth. Then came the nasty vertigo spells that led to spinning rooms and blackouts.

Chason tested negative a month later, but she still didn’t feel right. The left side of her face tingled. She felt chest pain, had debilitating brain fog, and started experiencing short-term memory problems. Four months after her initial diagnosis, in October, Chason’s physician told her she was suffering from long COVID.

When the vaccines started to roll out, Chason planned to wait and see how other long-haulers reacted before rolling up her sleeve. But on Feb. 10, her doctor offered her the Pfizer vaccine and she got the shot.

Four days after the first dose, Chason said, the symptoms — vertigo, nausea, loss of appetite, chills — hit like a lightning bolt. “I went through every single thing I had been dealing with since I had COVID,” Chason said.

A few days later, the vast majority of her long COVID symptoms — the brain fog, chest pain and face tingling — cleared up. “I’m better, I feel better. I’m not 100% to pre-COVID days, but I’m close,” Chason told HuffPost.

Around the world, many other people with long-haul symptoms — a condition now clinically defined as post-acute sequelae of SARS-CoV-2, or PASC — have reported similar experiences after getting a vaccine.

A recent informal poll from Survivor Corps, a Facebook community of COVID-19 survivors, found that 36% of people with long-haul symptoms noticed improvements in their condition after vaccination. About 50% remained the same. Other unofficial surveys have also estimated that about a third of patients with long COVID feel better after getting a vaccine.

At the same time, many others with PASC are hesitant about getting vaccinated, concerned the shot could exacerbate long-haul symptoms. They worry about being hit with side effects on top of the devastating long COVID pain.

In general, the vaccines don’t seem to worsen long COVID symptoms. The Johnson & Johnson trials enrolled several people who previously had COVID-19, and those people did not have a re-inflammatory reaction or particularly worse effect, according to F. Perry Wilson, a Yale Medicine physician and researcher at Yale School of Medicine.

But doctors know very little about PASC and how those with the condition might respond to a vaccine. So while it seems like the shot could improve long COVID symptoms in a small group of people, so much of what we currently know is based off anecdotes.

“We don’t know who gets PASC, who avoids it, what exactly is causing it, or how to even diagnose it effectively,” said William Li, a vascular biologist and medical director of the Angiogenesis Foundation. Without those answers, it’s difficult to clearly see how the vaccines impact long-haulers, for better or worse.

Li said researchers have homed in on a few theories as to what’s going on with PASC. First is that the virus can damage the tissues.

“Maybe you got beat up by the virus and it’s going to linger for a while,” Wilson added. Some researchers think there may be continued inflammation, and a third theory is that people with PASC have nerve defects.

The final theory in the running is that long-haulers may have bits and pieces of virus hiding out in their bodies. These viral bits would likely be undetectable on a PCR diagnostic test often used to diagnose COVID-19 — which makes sense as most PASC patients test negative — but those viral leftovers could be triggering symptoms.

If that turns out to be the case, a vaccine might activate the immune system enough to clear out the lurking virus and reset things. “We can’t explain this yet, but it suggests that amping up the immune system might make a difference for some long-haulers,” Li said.

Wilson said it’s also totally plausible that PASC symptoms simply get better over time, and given that these patients have had symptoms for a while, improvements may coincidentally be happening around the time of vaccination.

We need much more evidence to figure out why some people never fully recover and if and how the vaccines may help.

“More research on this phenomenon needs to be conducted, but the observation may be an important clue on how to treat PASC,” Li said.

The National Institutes of Health launched an investigation in February to study long COVID. And as more long-haulers receive the vaccines, doctors will get a better idea of whether the shots could be used as a possible treatment for PASC.

As for now, most doctors recommend long-haulers go ahead and get the shots. Evidence shows the vaccines are safe across a wide variety of circumstances.

“Maybe there’s a chance it will even benefit them, but the chances are that it will go just fine,” Wilson said.