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Distancing from the vaccinated: Viral anti-vaccine infertility misinfo reaches new extremes

"You can't fact-check someone's personal experience," said one expert. "With Instagram stories, people share their testimony, and the first round of it feels so intimate and immediate."
Photo illustration: A hand holding a phone open on an image of a prgenant belly on social media is surrounded by vaccines and Covid-19 spores.
Anjali Nair / NBC News; Getty Images

Yehuda Goldberg, owner of Brothers Butcher Shoppe in Ontario, updated the Covid-19 guidelines for people visiting his meat shop this month. He posted on Instagram that he would ask vaccinated people not to come in to protect his female customers.

"We have decided that since the majority of our customers are women and since women are most at risk for these side effects, we ask that if you've been vaccinated to please order for curbside pickup or delivery for 28 days after being vaccinated," the post reads.

The reason, Goldberg said, is that evidence is surfacing that people who have been vaccinated are "shedding spike proteins," which appears to be affecting women's menstrual cycles. While medical experts say that isn't true, Goldberg said that what he's reading shows that just being around someone who has been vaccinated can cause reproductive health issues for women and that he doesn't want to endanger any of his female customers.

"In my store, I'm going to stand up for women and stand up for women's rights, and I'm going to stand up and protect my customers," Goldberg said in an interview, adding that he isn't a doctor and that he can't say for sure that vaccine shedding — the false claim that people who have been vaccinated emit contagious particles — is happening.

Persistent myths like vaccine shedding are becoming more extreme on social media. The latest misinformation claims are that even being near vaccinated people is dangerous and that it can cause adverse side effects for women.

People like Goldberg are taking the warnings so seriously that they are starting to take action, asking that people who have been vaccinated stay out of stores and even canceling appointments with clients who have been vaccinated because of fear that being around vaccinated people can lead to menstrual irregularities, fertility issues or even miscarriages. A private school in Miami barred teachers who have been vaccinated from coming into contact with students and threatened the employment of teachers who had been vaccinated.

Among the reasons misinformation is spreading so rapidly is that its believers use unverifiable firsthand accounts, often shared on under-moderated social media features like Instagram stories and Facebook comment sections, where personal narratives that have long fueled the anti-vaccination movement spread even as some of the largest social media companies have struggled to curtail vaccine misinformation.

The firsthand stories are intimate, powerful and nearly impossible to fact-check, creating a challenge for platforms like Instagram and Facebook and an opportunity for anti-vaccination activists determined to spread their message. Conversations that link the vaccines to mentions of "shedding" increased in the last month by over 1,330 percent, according to data provided by Zignal Labs, which analyzes social media, broadcast, traditional media and online conversations about Covid-19.

"You can't fact-check someone's personal experience. With Instagram stories, people share their testimony, and the first round of it feels so intimate and immediate," said Jennifer Nilsen, a research fellow at Harvard University's Technology and Social Change Project who studies medical misinformation. "It's like 'I'm telling you my story, talking to my camera, and this story is going to be at the top of your phone for a day.' There's an urgency to it, and then people move it to a highlight reel where it can be saved, rewatched and added to a collection."

The personal testimonials aren't only videos. They are also appearing in text. Larger Instagram accounts with tens of thousands of followers have been posting screenshots of unverified vaccine injury stories culled from direct messages with names and photos removed to protect the privacy of the senders. The screenshots are added to story highlights and become large collections of personal testimony.

When Instagram removes anti-vaccination accounts for violating its rules, the testimonials that were originally shared are often saved and moved to blogs, Nilsen said, where social media companies can't remove them.

Expert advice

Doctors have been repeating for months that the Covid-19 vaccines are safe for pregnant women, women who are breastfeeding and women who would like to have babies. While the vaccines can trigger mostly mild side effects, medical professionals and public health officials have repeatedly debunked the idea that Covid-19 vaccines cause "shedding" or that such a thing could negatively affect the fertility or menstrual cycle of a nonvaccinated person.

"There is currently no evidence that any vaccines, including Covid-19 vaccines, cause fertility problems — problems trying to get pregnant," according to the Center for Disease Control and Prevention's page about the safety of the vaccines for women's reproductive health.

Dr. Lucy McBride, a practicing internal medicine physician in Washington, D.C., said: "When people are infected with the virus, whether they have symptoms or not, they do shed the virus. That's how the virus spreads in communities. The vaccine, though, does not shed. The vaccine is not contagious. There's no biological mechanism by which a vaccine would shed."

Sharing stories

The claims have spread mainly through small-time Instagram influencers focused on topics like so-called "natural" and maternal health.

Accounts populated with hazy art-directed portraits and pastel motivational quotations have been stable homes for Covid-19 vaccine misinformation. The accounts chiefly use Instagram stories, ephemeral content that disappears after 24 hours, to share compilations of what they claim are firsthand accounts of Covid-19 vaccine injuries.

The most popular accounts aren't limited to Covid-19 misinformation; they also spread a hodgepodge of other conspiracy theories about the so-called dangers of 5G to claims that the government is poisoning children with chemicals rained down from the sky or put into our toothpaste.

The narratives are a challenge for social media platforms.

"It's impossible to moderate," said Kolina Koltai, a postdoctoral scholar at the University of Washington's Center for an Informed Public who studies the anti-vaccination movement.

But it's imperative that the platforms try, Koltai said.

"There are multiple ways in which people can promote vaccine hesitancy. It isn't just manipulated science," Koltai said. "Their symptoms may be real, but unless you are also talking to their physician, making claims about what caused those issues could be misleading. What we know is that even just the implication that issues are being caused by a vaccine can be enough to create doubt."

Comment influence

The unverified anecdotes have migrated to Facebook, where groups dedicated to discussing the vaccines in good faith struggle to moderate the flood of posts and comments.

"We've got tens of thousands of anti-vaxxers who are constantly repeating these points of misinformation," said Robert Bennetts, who started and oversees COVID-19 Vaccine Side Effects, a 145,000-member Facebook group "where you can share personal experiences of vaccinations, as well as any side effects good or bad."

Bennetts, a pipeline worker who spends about five hours a day on the group, said that he was "on the fence" about the vaccines but that he has been swayed by his moderators to get vaccinated when an appointment becomes available in British Columbia, where he lives.

He said he has seen "quite a bit" of the vaccine shedding and menstruation misinformation in his group, which averages about 250 posts a week, according to data from CrowdTangle, Facebook's social media analysis tool. An overwhelming majority of posts are statuses in the form of personal anecdotes, which the group's moderators have had to heavily monitor in recent weeks to stop them from being hijacked in the comments sections.

Moderators "are even banning or blocking people from posting legitimate questions that they're concerned about," Bennetts said, "because they're afraid the anti-vaxxers might jump on in and start answering it and derail it."

Cat and mouse

Facebook, which owns Instagram, has tried to address some of the problems. Several of the most popular narrative-style anti-vaccination accounts were removed recently as part of an expanded policy effort to reduce the reach of content that discourages vaccination, including content that "shares stories about adverse events or side effects after vaccination that are presented in a shocking or hyperbolic way." Last week, Facebook updated its misinformation policy to prohibit claims about shedding.

"Working with leading health organizations, we take multiple approaches to addressing misinformation related to COVID-19 and vaccines, including removing content that violates our rules and promoting authoritative information from experts in our COVID Information Center, on specific posts discussing vaccines, and in Search," Brandi Hoffine Barr, a Facebook spokesperson, said in an emailed statement. "Conversations about vaccines can be nuanced, so we're continuing to work with health experts to make sure our policies are consistent with the latest trends and information."

But Facebook is also trying to play catch-up with social media-savvy users who are often one step ahead of them. Aware that a suspension was inevitable, many of these accounts used the lag between policy violation and enforcement to promote alternative channels on smaller, more lax, platforms, according to accounts viewed by NBC News. The bridge to migration is likely to have contributed to the success of several groups on Telegram, including one dedicated to Covid-19 vaccination "victims stories" with 95,000 subscribers. Telegram declined a request for comment.

Instagram and Facebook have shut down some accounts that spread public health misinformation, but that hasn't silenced anti-vaccination activists, who quickly restart accounts that regain tens of thousands of followers. According to accounts viewed by NBC News, an Instagram page dedicated to dissuading people from getting vaccinated claims to have been shut down by Instagram six times before its current iteration, which has picked up 27,800 followers since it first posted on April 21. Facebook removed the group following an inquiry from NBC News.

'Experimental jab'

As false claims that being near vaccinated people hurts unvaccinated women continue to spread, some people who believe them and own businesses across the U.S. and Canada are starting to take matters into their own hands.

Carly Benjamin, a photographer in Ontario, posted on her Facebook page in early May that she won't book sessions with vaccinated people until eight weeks after they have been vaccinated and then at a safe distance outside to protect her health.

"This is for my safety, as the potential for shedding/transmitting of this experimental jab is still unknown," her post read.

Benjamin said in an interview: "I get that there are a lot of doctors saying there's nothing to be concerned about and it's safe. And I've seen just as many doctors saying the opposite. And until we have more information, I think it's fair to proceed with caution." She said she has seen a lot of accounts of strange side effects in women, in particular. She said that she doesn't plan to be vaccinated and that she would rather avoid people who have been if she can.

For McBride, the doctor in Washington, debunking fears of people nervous to be vaccinated because of concerns about women's reproductive health, like Benjamin, is a regular part of the job.

"Every day I have somebody messaging me about the vaccine and infertility or periods or fears of getting sick or taking Advil with the vaccine," McBride said. "It's become a challenge."