Opinion: Long COVID mystery: Do vaccines help or hurt?

After months of struggling with long COVID, 25-year-old Ibrahim Rashid was excited to be vaccinated, seeking to prevent reinfection and perhaps ease his symptoms.

To his delight, the deep fatigue, chest pain and “brain fog” suddenly lifted. But within a month, the symptoms returned with a vengeance – accompanied by a shocking loss of balance and leg strength.

“After I got the vaccine, I was having the best time of my life. I was the happiest person in the world,” said Rashid, a graduate student at the University of Chicago who once excelled at skateboarding and martial arts.

“Then it all just started roaring back,” he said. “And my walking disappeared. … One day I was reading a book underneath a tree, and I just couldn’t get up.”

He’s among the many long COVID patients who report mysterious changes in their health after they get the vaccine. Some improve; others, like Rashid, worsen.

To study the phenomenon, a new nationwide project is being launched by Yale School of Medicine scientists.

Expanding on an initial pilot project of 20 patients, they hope to recruit at least 100 people to determine the influence of vaccination on symptoms that persist months after COVID-19 infection.

The effort uses cutting-edge immune profiling techniques to get a snapshot of each person’s cellular reaction to the shots.

The University of California, San Francisco is also exploring reports of the varying impact of vaccines within its major study of the long-term impact of COVID-19 infections, called the LIINC project.

These research efforts could offer insights into long COVID, which affects an estimated 30% of people whose infection was severe enough to need treatment, according to a study at UCLA’s COVID Ambulatory Program.

Long COVID is defined as a range of often-disabling symptoms that can last weeks or months after infection — and can happen to anyone, even if illness was mild.

The patients’ responses to vaccination “are a clue. They offer a breadcrumb trail to the possible biological mechanisms behind long COVID,” said Diana Berrent, founder of Survivor Corps, one of the nation’s largest grassroots COVID-19 patient groups.

“People with long COVID have been living in a medical desert. They are desperate for answers. They’re desperate for treatments. This will inform the next steps — coming up with treatments.”

It’s well known that vaccination can help prevent long COVID.

But, until now, no one has studied the effect of vaccination on those who are already infected.

When it was time to get his third shot, Rashid was fearful. But he was more worried about a repeat COVID-19 infection.

“I was terrified to get the booster,” he recalled. At the clinic, “I was crying like a kid.”

To his surprise, the experience was completely uneventful. Afterward, his health improved for awhile, then relapsed, and is now improving again. He’s completing his studies and beginning to exercise.

“I’m climbing back,” he said. “I still believe in vaccines.”