NY COVID Advocate Spurs Yale Study On Vaccinating Long-Haulers

PORT WASHINGTON, NY — "Long-haulers," sufferers of long-term effects of the coronavirus, have been plagued by uncertainty: Why have they not gotten better as quickly as most? What treatments, if any, should they try? And most recently, should they get a vaccine?

Diana Berrent is a Port Washington resident who founded the patient group Survivor Corps, which now has 166,000 members on Facebook. Berrent contracted COVID-19 early in the pandemic and formed the group to harness the grassroots power of social media, offer support and give long-haulers a collective voice in the medical establishment.

Some long-haulers say their symptoms improved after receiving a vaccine.

"There was tremendous trepidation among those suffering from long-term COVID, and we were prepared for every worst case scenario," Berrent told Patch. "The one possibility we hadn’t considered is that people would actually experience relief from their long COVID symptoms and that’s what we are seeing."

The Yale School of Medicine is launching a study to see how the vaccine affects long-haulers, partly inspired by Survivor Corps' non-scientific poll that showed 40 percent of members reported their symptoms improved after receiving the vaccine.

"Of course, this doesn’t apply to everyone and many of those who have reported relief still have lingering issues," Berrent said. "We have to remember that COVID can do irreparable damage to every organ in the system."

She said anecdotal reports offer insight into how long COVID-19 symptoms affect people.

"Once that is determined we can create a possible road to recovery for the millions who are suffering tremendously with the long tail of the COVID virus," she said.

Recent studies indicate up to 33 percent of those who contracted the coronavirus have symptoms lasting multiple months or longer.

Berrent said she had an average case of COVID-19 and wasn't hospitalized. But three months later, she said had a full relapse, with stomach issues, headaches and ear pain that lasted for months. Many long-haulers had similarly mild or even asymptomatic illnesses, according to Berrent.

"Most of our members were never initially hospitalized for COVID and we found that the strongest predicting symptom for developing long-term COVID was being asymptomatic, so it is tremendously important for everyone to know the signs and to realize that even the most mild case of COVID can have tremendously serious health impacts on young, otherwise healthy people," she said. "I consider myself extraordinarily lucky, as most suffering from long-term COVID are truly debilitated."

Berrent and others interested in how long coronavirus symptoms last are eagerly anticipating the Yale study.

"Perhaps the virus is still lurking somewhere in the body or possibly people’s immune systems are overreacting and not shutting off after purging the virus," she said.

"By examining participants’ blood and saliva samples before and after the vaccine Dr. Iwasaki [at Yale] and her team hope to determine what is causing long Covid and how it can be treated. The results could also shed extraordinary light on other chronic diseases as well."

Berrent hopes the research helps the long-haulers who feel like canaries in a coal mine, especially children.

"Legions of patients around the world ... are waiting with bated breath for those studies to be announced and commence," she said. "The area that is being truly ignored are the long term effects of COVID on children. We are being very cavalier about our children getting infected with this virus and are starting to see some dramatic cases of long COVID in kids.

"We have no idea the long-term health consequences this virus will have for them and that research can’t start soon enough."