AN INCONVENIENT TRUTH

Vaccines are one of humankind’s greatest medical achievements. And, as with every drug that has ever been made, they can have side effects. It’s not anti-science or anti-vaccine to say this. The co-existence of these facts means the mass Covid vaccination programme saved millions of lives and, inevitably, adversely affected a much smaller cohort of people.

Injuries vary from acute ones, such as vaccine-induced immune thrombocytopenia and thrombosis (VITT) – a dangerous condition involving clots in the blood vessels – to chronic ones such as vaccine-induced long Covid, which can cause a plethora of debilitating symptoms including extreme fatigue, pain and cognitive issues.

Overall, the benefits of vaccination far outweigh the risks. But what about the small minority who became ill or died after receiving the Covid vaccine – who listens to their stories?

Personal and clinical experience

Harriet Carroll was a Covid-19 clinical researcher in the UK’s National Health Service. She was a member of the Sars-CoV-2 immunity and reinfection evaluation (Siren) study, a large NHS research project into the immune response to Covid-19 and vaccine effectiveness. She contributed to several papers exploring the benefits of vaccination and was one of the first in line in the UK to have hers.

But things took an unexpected turn afterwards. “I had symptoms within a matter of hours,” she told Index.

These included numbness in her hands, dizziness, nausea, slowness, weakness and flu-like symptoms. Her tests, which formed part of the Siren study, offered clear evidence that her sudden illness wasn’t caused by Covid-19 infection.

She was diagnosed with a hyperimmune vaccine response and has had myriad health issues including multiple pulmonary emboli, where blood clots block arteries in the lungs. Four years later, she still experiences multiple debilitating symptoms including fatigue, post-exertional malaise, insomnia and nausea, and is largely confined to her home. But she has struggled to get the medical help she needs.

Carroll has also met resistance in a professional capacity. In 2022, she was invited to submit a pre-recorded talk about translating evidence into clinical practice for an NHS Scotland conference on long Covid. She included her own experience of having been diagnosed with vaccine-induced long Covid after following NHS clinical pathways. She says she submitted it to her regional health board, NHS Grampian, for screening but it was rejected as she believes it didn’t “toe the party line”.

While she says her talk included only one “benign line” referencing the vaccine trigger for her long Covid, she said: “I genuinely think that they were super-anxious that this was some kind of propaganda to try to discourage vaccination.”

The health board told her over email: “NHS Grampian does not currently have a ‘party line’ on post-vaccine long Covid. This needs to be done first, prior to any communication on the subject if we are speaking as NHSG representatives. Suggestion is to remove reference in slide to post-vaccine as this does not impact the overall recommendations provided.”

Academia ignored

In 2021, a renowned biochemist in New Zealand – which had introduced vaccine mandates – was experiencing similar frustrations. Warren Tate is an emeritus professor of biochemistry at the University of Otago and a researcher in myalgic encephalomyelitis (ME). “I’ve always been pro-vaccination,” he told Index. Having observed adverse Covid vaccine reactions for ME patients through his study group and self-reported online surveys, he stipulated that there were more than 20,000 people in New Zealand vulnerable to the effects of the vaccine, and wrote to the government requesting vaccine exemptions. He also submitted an evidence-based paper on vaccine injury risk. While he says he initially received a “very gracious reply”, ultimately his concerns were not acted on.

In the USA, researchers have been unable to publish work on vaccine injury. Using data from the Yale Listen Study, they released two papers: one on long Covid and another on post-vaccine syndrome. The papers had comparable datasets, and identical methodology and data analysis. The long Covid paper was published without hesitation, but the vaccination paper never made it past the pre-print stage.

David Putrino, director of rehabilitation innovation at Mount Sinai Health System (the largest hospital network in New York City), was one of the researchers. He says that despite the post-vaccine syndrome paper clearly emphasising the net benefit of Covid vaccination, they could not get it peer reviewed “due to stigma and optics”.

Silenced realities

Online censorship of people’s vaccine reactions is commonplace. Charlet Crichton, who gave a witness statement at the UK Covid Inquiry, was in hospital with a severe Covid vaccine reaction.

She says that her medical consultants submitted 12 reports through Yellow Card – the online UK government service where people can report issues with medicines or vaccines. She started posting about her experiences online. “I got my first account warning by Facebook and I was told that if I posted anything like that again then I would be banned,” she said.

Crichton set up a charity, UKCVFamily, for the Covid vaccine-injured and bereaved, to provide a safe space for people to share their experiences and support each other. “We don’t allow any posts that are deemed anti or pro-[vaccine],” she said. But despite the group’s neutrality, it has still been censored online.

“We had an account warning because of a BMJ [British Medical Journal] article that was posted about vaccines,” she said. A poll of UKCVFamily members found that 74% had been censored when talking or posting about their adverse reaction to vaccines online. Relegated to the communication style of a criminal operation, the members started speaking in code instead, using emojis and abbreviations to work around the algorithms.

Even official communications regarding vaccine injury, such as evidence to the UK Covid Inquiry, have not been spared from censorship. Anna Morris KC, who represented UKCVFamily and other vaccine-injured groups, noted that “censorship has continued years after the pandemic”, adding that YouTube had removed a video featuring her legal submission to the enquiry. Despite requests for review, YouTube cited a violation of its “medical misinformation policy” as grounds for removal.

Another issue has been government self-censoring in order to encourage vaccine uptake. In her closing speech at the inquiry, Morris highlighted that government messaging had favoured “speed and simplicity” over “transparency”. She also pointed out that pathways to reporting vaccine injuries were inadequate: “The Yellow Card system was poorly known about, even amongst healthcare workers, and in 2021… not even the health secretary, Sajid Javid, knew about it.”

Inconvenient truths

Being silenced can give those impacted the impression that they’re victims of a big conspiracy – an understandable but inaccurate conclusion. The reasons are far more complex. Much of the censorship is born of good intention to reduce vaccine hesitancy. Or, as Putrino said: “Folks often engage in cover-ups like this because they think that they’re doing something for the greater good.”

Valid questioning of Covid vaccines was discouraged to avoid it hampering what seemed like the only way out of endless lockdowns and restrictions. Dr Asad Khan is a former NHS respiratory consultant who has had long Covid since contracting the virus in November 2020 while working. He then found himself bedbound after some of his symptoms got worse following the vaccine in February 2021. He has thoughts on the unquestioning religiosity surrounding vaccines. “They’re the most effective group of drugs in history in terms of the amount of death and devastation that they have spared us... so I think that’s where the worship comes from.”

But there is a less benevolent reason for hushing up vaccine injury – no one wants to take responsibility for it. Morris’s closing speech to the UK inquiry acknowledged that the government acted quickly to secure a “safety net” for pharmaceutical companies to protect them against the risk of litigation from adverse reactions, but did not provide a safety net for the people who suffered those reactions.

The rise in anti-vax misinformation online has also made it much more difficult for those with genuine injuries to tell their stories, as it has inhibited empathy and critical thinking. “People worry that if they acknowledge there’s a problem it will embolden and empower anti-vaxxers,” said Putrino.

Social media has become a megaphone for those who “believe in conspiracies and who’ve done a lot of damage, [when] none of their arguments are based in science,” added Khan. Organised disinformation – the intentional spread of false information – was already happening before the pandemic, as one 2018 PubMed Central study on “weaponised health communication” indicated. It looked at how Russian trolls and Twitter bots were being mobilised to intentionally stoke division in the vaccine debate.

The side effects of silence

Ironically, attempts to censor the realities of vaccine outcomes to encourage uptake may have actually created more vaccine scepticism. “The lack of support for genuine vaccine injury is massively feeding into vaccine hesitancy and anti-vaccine rhetoric,” said Khan. However, he also acknowledges that it is difficult for governments to communicate that vaccines are safe and effective for most people, but that there can be adverse events for others.

For the injured and bereaved, it can feel as if nobody believes them. “We live our reality every day,” said Crichton. “Yet society, public health [professionals], doctors, government, even friends and family say our reality is wrong.” And this can have tragic implications. Crichton says that since August 2022 more than one member of UKCVFamily has taken their own life, and 76% of members have contemplated it since their adverse reaction to the vaccine.

She believes that “censorship has had a massive part to play in that” as “it has socially isolated and further stigmatised a marginalised and vulnerable group”. “If you can’t talk to your peers, your friends, or talk freely in society about your real, lived experience then that has a really detrimental effect on not only your own personal health but also on the rest of society.”