Written evidence submitted by UKCVFamily (SMH0021)

Written Submission for the Social Media, Misinformation and Harmful Algorithms Inquiry

Introduction to UKCVFamily

UKCVFamily is a registered charity in England and Wales (1207178) supporting those who are adversely affected by Covid-19 vaccination in the UK. We are run entirely by volunteers, all of whom are vaccine-injured or -bereaved themselves. Formed in November ‘21, and awarded charity status in February ‘24, we focus on the needs of UK-based patients, providing help and advocacy; and actively raising awareness amongst the British healthcare system, media, and government. We mostly provide support through our very active online community. We host online social and well-being events, in-person outreach events, provide MP and GP letter-writing support, and organise presentations from healthcare practitioners. Facing social stigma for talking about their symptoms, for some members these groups are the only place where they feel safe enough to speak freely about their illness, disability or bereavement. And for the majority, these private groups are the only place where the affected are receiving any kind of support.

Social Media 

The collective experience of our charity and its service users can offer an alternative viewpoint regarding social media, and the way it deals with issues that the inquiry is addressing. Having suffered an adverse reaction to a Covid-19 vaccination, given the lack of information available in the main, many of the people we support looked to social media to be able to connect with others going through the same experience. It very quickly became clear that social media platforms classed posts made by people who had suffered an adverse reaction to a Covid-19 vaccination, as misinformation. In 2021, many private support groups were shut down by Meta, and any posts made by people discussing the adverse reactions they had suffered, were given a social media account warning or removed completely from the platform. The people we support, and UKCVFamily, soon learnt that if we were to be allowed to keep the private support group, we would have to self-censor. Rules had to be made for the group, to avoid triggering the algorithms that would see members removed from the only support network that they had. The Telegraph covered this  People injured or bereaved by Covid vaccines ‘speak in code online over censorship fears’ .

Shadow-banning has also been used to censor our service users. This practise is widely known about yet social media companies fail to disclose that it exists. It is the adjustment of algorithms which effectively makes the platform users’ posts ‘invisible’ to others.  This shadow banning has meant that many of our charity posts, and individuals that are adversely affected by Covid-19 vaccination have essentially been isolated from their support networks online. In particular, many of the people we support are now immunocompromised due to their vaccine-injury and are unable to socialise in person, especially in the winter months, which means the online support system is very important to them due to social exclusion. Many can no longer work and are housebound because of their new disabilities. A poll of UKCVFamily support forum members showed that 74% had been censored by social media companies when they had posted online about their lived experiences after suffering an adverse reaction to a Covid-19 vaccine.

Words like “carrot,” and emojis are used instead of the word “vaccine” itself so that the people affected can safely converse their symptoms and experiences in the hope of finding support and solutions that the system is failing to provide. A BBC reporter exposed the coded communication claiming that the vaccine-injured are ‘anti-vax’ resulting in one of the Facebook support groups being shut down. There is always the worry that what are lifelines for many will be lost. It would never be considered reasonable to shut down a support group for other life changing illness sufferers.

Since becoming a charity, UKCVFamily has paid for advertising on platforms such as Meta, Tik Tok and Twitter. We have repeatedly been informed by people that support our charity that when they try to share our adverts, that they receive a warning from Facebook. These adverts are pre-approved, with Meta taking payment from our charity but then are censored by the company. Tik Tok received copies of our charitable registration and yet would reject our posts as ‘misinformation’. This approach hasn’t been consistent, sometimes an ad or post is accepted, and is shareable without consequence, sometimes we must appeal a decision and sometimes it is removed altogether by the social media platform. The very same post or advert is acceptable for several weeks, then suddenly it is removed. We have also received notification of posts being removed but with no means of appeal, nor any information regarding what has been removed or why. UKCVFamily are very careful not to post anything that is untrue and nor do we state an opinion on the wider topic of vaccination in general, we remain neutral in opinion and true to our charitable aims.

The inconsistent approach that social media companies take to what is classed as a community standard breech is just as concerning as the censorship.

One of the people we support, Alison Butler, had a petition published by the Welsh Senned Parliament which calls for an NHS treatment pathway for people adversely affected by Covid-19 vaccination. This too was censored by Facebook, and when it was shared it was removed as ‘spam’. Mrs Butler said, “Welsh Parliament suggests sharing your petition online; to use hashtags, not once did I think that sharing an official Welsh Parliament Petition would end up with it being censored on mine and other peoples’ social media pages. Due to my disability, I cannot get out to collect paper signatures and I’m reliant on social media on reaching others.”

From June until mid-October, I was struggling to get the petition seen, posting several times throughout the day, but because of my posts being restricted, posts being removed, in 4 months I’d only collected around 600 signatures. I appealed to Meta several times to no avail.

Once we managed to get past the censorship eventually, just a few weeks before the petition end date, the signatures climbed so quickly. You clearly see how disruptive the censorship was. From end of October to today 5th December the petition is now at 6,892, that’s 6,000 in around 5-6 weeks, and that is only because several organisations have written article about it so it was seen that way”

Harmful Content and Online Bullying

In January 2023, those suffering from Covid-19 vaccine adverse reactions were targeted on social media in an online hate campaign. Several celebrities along with the linguistics company Duolingo, created posts that ridiculed people affected who suffered from neurological tremors as a symptom of an adverse reaction to a Covid-19 vaccine. Social media companies did nothing to stop these bullying posts which spiralled onto most platforms. The Duolingo post can still be found here with the words “Thanks Pfizer” and has had over 10.2 million views.   https://x.com/duolingo/status/1617619591303421953?t=7BAT_3yjYVJsVNWWiVNSsg&s=19

Many people reported this content, but it has remained on the platform. Given that many people who are severely adversely affected by Covid-19 vaccination now have a disability, this is discrimination of a protected characteristic, and should not be acceptable in modern, British society, regardless of how that person became disabled.

Harmful Marginalisation of Other Minority Groups

UKCVFamily and those adversely affected by Covid-19 vaccinations are not the only group which has been further marginalised or faced discrimination by social media companies. In 2023 an academic research paper by Donelly and Stapleton, “Are Online Social Spaces Further Marginalising Minority Groups in Society? A Case Study of the Experiences of the LGBTQ Community in Ireland” concluded that, “Ireland is seen as a world leader in LGBTQ rights since the legalization of same-sex marriage by public vote in 2015. In spite of these new freedoms, enshrined also in EU civil liberties, we present evidence that the LGBTQ online space lacks, a safe space for a diversity of genders and sexualities. We conclude that digital public spaces continue to marginalize these communities, and we make recommendations for IFAC research and digital public policy* (https://doi.org/10.1016/j.ifacol.2023.10.128)

In June 2023, Bodyform launched a campaign to reduce the stigma around Women's health, which was censored heavily by social media platforms. Gareth Lucy spokesperson for the brands parent company said, ‘It’s unfortunate but not surprising that our latest campaign – which calls out the unnecessary censorship of words that should be used to talk about, describe and define women’s bodies and their experiences – has been censored by some social media companies.

‘In doing so, these companies have simply underlined the need for campaigns of this nature that seek to break down the barriers that prevent women from being able to speak openly and confidently about their bodies.”

The company started to self-censor by using special characters in words such as v@g!na to avoid being banned (Bodyform ad: Facebook and Twitter have a problem with female anatomy | Metro News)

In July 2020, Time magazine published an article, “These TikTok Creators Say They’re  Still Being Suppressed for Posting Black Lives Matter Content”.  Time author, Megan McCluskey wrote, “Videos being taken down, muted or hidden from followers: These are all issues that some TikTok creators say they’re facing for posting Black Lives Matter content.

In the wake of releasing a statement in June apologizing to members of its Black community who have felt unsafe, unsupported, or suppressed, TikTok continues to face bias allegations from Black creators and others posting Black Lives Matter content.”  (Black TikTok Creators Say Their Content Is Being Suppressed | TIME)

Summary

In the experiences of our charity, and its service users, we have noticed inconsistency, to be one of the main issues with social media platforms. The same content can be “allowed” one day, or by one person, yet the next day it is removed for going against community standards. While one person can share content, another cannot share the same content. The three posts that are being examined by The Oversight Board which fuelled the summer riots are an example of this inconsistency. One post was removed, but the two others remained, apparently none were reviewed by human beings.

Social media can be a valuable tool for the public, especially those who are housebound. It enables social connections to flourish and a supportive network to form which otherwise wouldn’t be as accessible to many people. However, online communities face the same issues as any other and as such need safeguarding. At the present time, the inconsistent approach by social media companies to standards combined with the lack of human oversight and clear boundaries prevents the social media space from being kept a safe and supportive space for many.

Whilst some types of content go unchecked on social media, marginalised groups are subjected to discrimination which encourages behaviour that adds to wider societal harm.

The recent developments during the summer of 2024, highlight the key inconsistencies in the way social media platforms regulate content, allowing hate speech to spread rapidly yet censoring real lived experiences and discriminating against those already marginalised.

17 December 2024