(CBS News) - Many people coping with COVID-19 symptoms long after their infection say they are terrified of getting the COVID-19 vaccine, worried that the shot meant to protect them will make the debilitating symptoms worse. But some patients are actually reporting the opposite after their shots.
A Facebook group called “Survivor Corps” polled 962 COVID-19 long haulers and found 39% said they saw mild to full resolution of their lingering symptoms after they were vaccinated.
46% of people said they remained the same after their shot, 14% said they felt worse.
“For me, this is a miracle,” COVID long-hauler Kimberly Willis-Rinaldi told CBS News senior medical correspondent Dr. Tara Narula. “The viral conjunctivitis specifically in my right eye is gone. The rash that was on my back and on my arms and my neck, that’s gone.”
Before her vaccine, Willis-Rinaldi said she felt “extremely fatigued” since her COVID-19 diagnosis last March.
“I was having these excruciating pains in my back and in my lungs almost,” she described.
After the vaccine, she said “the extreme, extreme fatigue episodes, those have gotten better.”
The poll caught the attention of Dr. Akiko Iwasaki, professor of immunobiology at the Yale School of Medicine. She said it was not something she had “expected to see.”
Iwasaki is launching a study on people with long COVID-19, collecting blood and saliva samples to compare immune responses before and after long-haulers get the vaccine to understand if it really helps.
One long COVID theory is that pieces of the virus may “hide” in the body.
“The vaccine induces robust antibody and T-cell responses that can clear the viral reservoir or remnants that’s causing the inflammation, and that would be a permanent solution to long COVID,” Iwasaki said.
Another theory is that long COVID is driven by a hyperactive autoimmune response, and the vaccine may reduce those responses.
“There is no good therapy for long COVID and the people have really debilitating symptoms,” Iwasaki said. “So there’s a lot of excitement about this study.”
COVID long hauler Judy Dodd said she was terrified of getting the vaccine.
“At the same time, I was terrified not to get the vaccine,” she said.
Dodd suffered dizziness, headaches and exhaustion for more than a year after she got COVID-19.
After her vaccine, she noted a happy improvement.
“A few weeks after I got the second vaccine, I was like in my living room, like dancing or something,” Dodd said. “And my partner was like, I don’t think I’ve seen you dance in a year.”
Dodd compared the change in her body to someone flicking a light switch.
“I forgot what it was like to, like, wake up in the morning and feel good and feel, you know, excited for the day and not feel defeated before you’ve even gotten out of bed,” she said.
Yale hopes to enroll 100 people with long COVID in its study to understand these phenomena and see if the relief will last. Researchers also say the findings could help in other diseases that may be triggered by a virus, such as chronic fatigue syndrome.