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'Long COVID-19' patients eager for answers about vaccines

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Posted at 12:15 PM, Apr 15, 2021
and last updated 2021-04-15 13:15:38-04

While many people recover from COVID-19, others are finding symptoms that won’t go away. While researchers are working to find out what’s behind what some call "long COVID," some patients are eager to hear if hope lies in a vaccine.

Symptoms can include fatigue, shortness of breath, brain fog, gastrointestinal issues, and more, according to the NIH. The agency recently launched an initiative to study what it calls Post-Acute Sequelae of SARS-CoV-2 infection (PASC).

RELATED: Patients, medical community focus on long-term impacts of COVID-19

Amanda Finley says she fell ill with COVID-19 twice, first early on in the pandemic and unable to get tested, and again in October. Like others, she found her symptoms lingered. She founded an online discussion group for others with similar experiences.

“The big thing for me was tachycardia,” she said.

Almost a year to the date when she got sick, she got vaccinated. But what took her by surprise was what happened next.

“My tachycardia has subsided, my shortness of breath that I had related to that has subsided. The brain fog, the fatigue, has subsided. And we had been telling our members for months the vaccines are not designed to treat symptoms. They’re preventative, so I was just sort of just taken aback,” she said.

Now she’s curious whether the COVID-19 vaccine had any impact, recognizing it’s only anecdotal at this point.

“I realized there’s something to this we need to take note and get in touch with researchers so we can figure out what this key is,” she said.

It’s a question researchers are just starting to look at.

“That’s very important, and again, I would say really unclear situation,” said Dr. Christian Bréchot, a professor of medicine at USF Health and president of the Global Virus Network.

He says more comprehensive studies are needed.

“For example, would it be possible 'long COVID' would be due to some virus reservoirs, that means visual persistence in some hidden site in the body you see and that the vaccine would be efficient against these reservoirs. But this we have no evidence for this it’s just a hypothesis,” he said.

One small study, not peer-reviewed, looked at the vaccine’s safety for patients with "long COVID," concluding it wasn’t associated with a worsening of symptoms.

But there are not many studies yet, and as Dr. Bréchot points out, it can be difficult to interpret.

“Now in addition to this they have provided some I would say preliminary evidence for a beneficial effect of the vaccine. But again these were not randomized, controlled, clinical trials and so I would say that for the efficacy of the vaccine the evidence is still insufficient,” he said. “It is only a suggestion, it’s a possibility, it’s obviously very important to follow up on this but we do not have conclusive evidence so far.”

The NIAID said more research is needed to understand how the COVID-19 vaccination may affect people who don’t return to full health after the virus. It said two studies may help, stating in part:

“The IMPACC study is following participants for up to 12 months after hospitalization for COVID-19 to assess how well they recover and characterize their immune responses. Another study [clinicaltrials.gov] is enrolling people who recovered from COVID-19 and a control group who never had COVID-19 and will follow participants for three years. While these studies are not supplying vaccines, some participants are being vaccinated as part of the general U.S. vaccine effort. Study researchers are capturing information on participant vaccination and any effects on symptoms.”

The organization, Survivor Corps., surveyed just over 900 of its members on long-term COVID symptoms post-vaccine. It said 45% reported no change, 42% reported improvement and 13% said symptoms worsened.

The anecdotal reports, though, are giving some dealing with symptoms hope.

“I am hopeful. I’m not counting on it,” said Vitas Martinenas.

He’s waiting to get his second dose as he battles "long COVID."

“If it helps a certain amount of people hopefully I’ll be one of the lucky ones, it’s no fun living like this so I’m sort of grasping at straws here,” he said.

Meanwhile, Delainne Bond is working to educate others in an online support group she founded and let them know they’re not alone.

“It’s just a really big gap in what people know, what the doctors know, what the patients expect, we’re all looking for a cure,” she said.

Bond doesn’t think she’s in a situation where the vaccine is improving her symptoms, but for her, it’s about preventing another infection. She said her symptoms have been under control with interventions, including a strict low histamine diet after finding she was more sensitive to allergens after her COVID-19 illness.

“The message I see over and over again is people feel hopeless they feel like their lives have been taken from them they’re never going to get it back,” she said.

This story was originally published by Haley Bull at WFTS.