(ABC4) – About an hour after Brianne Dressen received her first dose of the AstraZeneca COVID vaccine as part of the clinical trial, she felt a tingling sensation down her arm, and later that night, she says her vision doubled and became blurred. The next day, she reported severe sensitivity to sound and light, and after multiple trips to multiple doctors, she says medical professionals still didn’t know what was wrong.

In the coming months, Dressen’s symptoms worsened – she says she was also experiencing heart and blood pressure fluctuations, in addition to profuse sweating and intense brain fog. Her ailments escalated to the point where she was confined to a dark room at all hours, largely isolated from her family, career, and the outside world.

“My kids were removed from my life at that point,” she remembers. “The suffering was so severe that my son couldn’t touch my hand because my hands felt like they were burning. The sound of their little voices was too painful for my ears.”

Although the CDC has not officially linked side effects like those reported by Dressen to the COVID vaccine, she believes that they are related to the shot.

After she reported motor dysfunction and incontinence, her condition ultimately ended up landing her in the hospital.

Though her symptoms – which she’s documented with the National Institute of Health – have lessened in recent months and she’s been able to resume some elements of her prior life, Dressen felt increasingly alone in her experience during the time period after receiving the vaccine. That is, until she was able to connect with others reporting severe vaccine side effects through social media groups.

Brianne Dressen in treatment for injuries she believes were caused by the AstraZeneca COVID vaccine, photo courtesy of Brianne Dressen

“I went through all of this by myself. I was totally alone. I didn’t know anybody else that was having these problems,” Dressen says. “And then I finally came in contact with a few people in the end of March/first of April and I was elated because I was no longer alone. And that’s actually when I was able to make that paradigm shift to not wanting to die anymore.”

It was in these social media groups, which were primarily hosted on Facebook, that Dressen met several other Utahns, Nicole Keddington and Pam Warren – in addition to a slew of others across the world – that were also reporting these symptoms.

Warren, who received the Moderna shot and was diagnosed with an autoimmune disorder prior to receiving the vaccination, says finding the group helped her connect with the right medical specialists who could help her.

Screenshot courtesy of Brianne Dressen, names and images redacted for privacy reasons

“I was tagged in an article by a family member linking me to [Brianne Dressen] and she pulled me into the Facebook group,” Warren says. “It was at that time that I was finally able to find the right doctors in my area to help with some of my conditions.”

Talking with their peers was a source of hope for each of the women, but as quickly as they found the groups and were experiencing a sort of relief, they say the groups started to disappear.

According to the women, community groups and posts were – and still are – flagged by various social media platforms for alleged violations like “false information,” “spreading misinformation” and “dangerous acts.” They say that many of these groups are in their third or fourth iterations due to repeated takedown notices.

Dressen has documented vaccine injury-related content removal on Facebook, YouTube, TikTok, GoFundMe, Reddit and Instagram.

Pam Warren and Brianne Dressen, two Utahns who believe they have incurred injuries stemming from the COVID-19 vaccine, photo courtesy of Brianne Dressen

Many social media platforms have some extent of a misinformation policy, which is intended to dissuade and prevent the spread of fake news and conspiracy theories. Most companies use a combination of computer algorithms and human factcheckers to identify and remove false information.

Facebook has invoked a specific set of rules pertaining to COVID-19 information. According to their help center, they are liable to remove “misinformation when public health authorities conclude that the information is false and likely to contribute to imminent violence or physical harm,” According to the same help center article, Facebook is apt to remove content relating to “claims about the safety or serious side effects of COVID-19 vaccines.”

YouTube has a similar policy, though they do not explicitly mention the discussion of adverse side effects like those reportedly experienced by Dressen, Keddington, Warren, and their peers.

TikTok’s protocols are also less in-depth. The popular video sharing platform mentions their work to eliminate anti-vaccine and COVID-19 misinformation in their COVID-19 policy statement, noting that “calls to action related to COVID-19 vaccines are accepted on a case-by-case basis if they’re in the interest of public health and safety.”

GoFundMe implemented an anti-vaccine policy in 2019, which authorizes the removal of fundraisers “promoting misinformation related to vaccines that have been approved by regulatory bodies,” Although Dressen asserts that many vaccine-injured individuals have resorted to using other crowdfunding platforms, GoFundMe’s policy notes that people can fundraise for “medical expenses related to COVID-19 and vaccine-related injuries.”

These misinformation policies – which social media companies say they have invoked to reduce fictitious content relating to vaccines and other hot-button issues –  are authorizing removal of posts and groups related to reported vaccine injuries in the same way they are addressing other content that is perhaps more harmful.

Dressen, Keddington, and Warren say that they – and the majority of the individuals in the group – aren’t anti-vaccine at all, they just want help.

“I’m constantly getting these ‘COVID vaccines are safe,’ things pop up all over. I don’t think anyone on the page – we’ve talked about it – is anti-vaccine. We all got [the vaccine],” Keddington, who received the Moderna vaccine, says. “We just need some help.”