Research: What our data tells us about Covid-19 Vaccine Injury

We've analysed the data from our injured UK CV Family members and have found that:

In our UK-based sample of 181 COVID-19 vaccine injured patients, the majority (80 %) were women, with an average age of 44 years old (though these reactions spanned all age groups, with one of our youngest being 21 and our oldest at 70 years young).

Most reactions (73 %) occurred after the 1st dose. Most of these reactions were from AstraZeneca (73 % first dose and 50 % second dose reactions), likely due to the higher rollout of AstraZeneca in the UK. We also have patients with reactions to Pfizer, Moderna, and J&J. Those who reacted to Pfizer were typically younger than those reacting to AstraZeneca, which may have been influenced by policy change whereby Pfizer was recommended for younger people. The vast majority of us had our reactions within a day or two of getting vaccinated. However, a minority of reactions manifested after a more extended timeframe (e.g. over 50 days post-vaccination).

Our group reported 42 individual symptoms, with most experiencing multiple symptoms. Most common symptoms included paraesthesia (e.g. tingling and numbness), pain, fatigue, and heart problems, whilst fewer reported issues like hair loss, hearing loss, and seizures. The vast majority who responded to our survey had no formal diagnosis. The minority who had received a diagnosis reported inflammation, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), autoimmunity, small fibre neuropathy, ME, and others.

As you can see from the data above, last analysed in April 2022, we could use your help. Please reach out to help our UK CV Family by sending us a message at enquiries@ukcvfamily.org. If you are based in the UK and have been injured after receiving your Covid-19 Vaccine, don't hesitate to contact us or visit us on Facebook.

Need support, or are you interested in offering your support?

If you are based in the UK and have been injured after receiving your Covid-19 vaccine, you can reach us by email at enquiries@ukcvfamily.org or visit us on our Facebook page.

UK CV Family is run by Covid-19 vaccine-injured volunteers living in the UK. We need your help to keep our group active and raise awareness to support all of our UK CV Family members and others affected by the Covid-19 vaccines. If you would like to offer further support, we are accepting donations via GoFundMe using this link https://gofund.me/2d72aac8.

Thank you, we are truly grateful for any help you can provide.

Advocacy: Our very first blog post for our new website and UK CV Family's recent correspondence

Our UK CV Family has been working hard behind the scenes advocating for all our injured members of the group and others just like us. We've been sending out letters and emails to over 100 scientists, doctors, researchers and NHS boards in the last few weeks. A partial copy of our message sent is below:

Subject: Severe and persistent adverse reactions to SARS-CoV-2 vaccination Dear (Addressee) We are looking to collaborate with scientists and doctors to research peculiar and rare COVID-19 vaccine reactions. We are members of a large and growing online community of over 3000 worldwide and over 260 UK patients who have suffered a range of chronic and severe neurological and cardiovascular reactions that appear to be linked to the COVID-19 vaccine. It is imperative we state that as a community we are pro-science and pro-vaccine and have no interest in having our experiences distorted or used to promote vaccine denial. However, our stories need to be heard to advance the understanding of vaccine safety and immunology. Much research has shown the COVID-19 vaccines can cause cardiovascular and neuro-immune reactions (e.g. Finsterer, 2021; Kaulen et al., 2021; Patone et al., 2021; Watad et al., 2021); however, our presentations are often atypical or too generalised to get a clear diagnosis. As such we are left without answers. Nonetheless, scientific research into both COVID-19 and the vaccines appears to increasingly validate our experience that our symptoms are caused by the vaccine, with emerging evidence suggesting that in rare cases the vaccines can cause side effects that parallel post-acute sequelae of COVID-19 (PASC, commonly known as “Long COVID”), with similar underlying pathophysiology (Couzin-Frankel & Vogel, 2022). Our group have suffered a range of chronic neurological and cardiovascular symptoms, including paraesthesia, paralysis, neuropathy, tinnitus, visual changes, brain fog, headaches, muscle twitching/tremors, weakness, abnormal Holter heart traces, thermodysregulation, GI and bladder issues, and skin problems (e.g. whole body rashes), among other things. As such, some have had diagnoses of conditions such as dysautonomia/POTS, small fibre neuropathy, demyelination and neurodegeneration, costochondritis, mast cell activation syndrome, autoimmunity, and suspected MS. Many of us also have objective markers of homeostatic dysregulation, such as elevated D-dimer, VEGF, cytokines, autoantibodies, and MRI imaging of neurodegeneration/demyelination. Whilst the pathophysiology of many of our reactions is unclear, emerging evidence has suggested multiple potential pathways. Many of us have had autoantibodies tested (e.g. ACE2, AT1R, FGFR3, M1-5) which are in line with PASC (Arthur et al., 2021), ME (Loebel et al. 2016), small fibre neuropathy (Trevino & Novak, 2021), and other symptoms/conditions we are suffering (e.g. Nussinovitch & Schoenfeld, 2012). We also have evidence for mast cell activation disorders, which has also been found in PASC (Weinstock et al., 2021), and indeed we often hear reports of symptomatic improvement with antihistamines. Professor Pretorius and Professor Doug Kell have additionally found “microclots” in PASC patients (Pretorius et al., 2021), and have proposed that similar could be happening in some of us suffering with severe and chronic vaccine reactions (Couzin-Frankel & Vogel, 2022). The majority of us have (to our knowledge) never had SARS-CoV-2 infection, strengthened by evidence of negative nucleocapsid antibody testing. We have attached survey results of our UK members (n =181). We asked members to describe their post-vaccination symptoms, what tests they have had, and what treatments they have been given. We will update these data periodically and would be happy to share these updated results. The key findings are that more women than men are affected (n=144), parathesia/numbness/tingling, pain, headache and palpitations are the most common symptoms and most participants have received no official diagnosis ( Please see attached data analysis ) Considering the above, and that we are currently struggling to access treatment despite the significant impact on our lives (including time off work and being bedbound for significant periods), we desperately need doctors and scientists to study our reactions, and we need medical interventions to help manage our symptoms effectively. We are therefore keen to speak to any researchers interested in studying our reactions, for example, to find whether there are genetic predispositions or underlying latent conditions causing our reactions. Currently, due to lack of research, many of us are left self-experimenting with treatments which could potentially be harmful and appealing to pseudoscience. However, it is of great scientific interest to understand our reactions. Firstly, this will aid in better vaccine development. Secondly, tests can be developed to screen for those at high risk of severe and chronic adverse reactions, allowing patients to make proper risk:benefit analyses. Thirdly, our reactions give valuable insights into the range of immune responses that can occur to the same protein; such insight will have applications beyond the COVID-19 vaccines, such as PASC and ME. Finally, research will shape clinical guidelines so medical professionals can conduct targeted testing, and patients can receive appropriate treatments with minimal delay. If you are interested in speaking to us, studying us, or having access to the data we’ve collected, please do get in touch. Please share this data with anyone else you know who might also be interested in discussing or investigating our issues in any way. We look forward to your response, and kind regards, (UK CV Family Advocate - Sender) UKCVFAMILY Enquiries@ukcvfamily.org ( Support group for vaccine injury )

Need support, or are you interested in offering your support?

If you are based in the UK and have been injured after receiving your Covid-19 vaccine, you can reach us by email at enquiries@ukcvfamily.org or visit us on our Facebook page.

UK CV Family is run by Covid-19 vaccine-injured volunteers living in the UK. We need your help to keep our group active and raise awareness to support all of our UK CV Family members and others affected by the Covid-19 vaccines. If you would like to offer further support, we are accepting donations via GoFundMe using this link https://gofund.me/2d72aac8.

Thank you, we are truly grateful for any help you can provide.

Finding My Voice: Sharing Stories with Kindness and Compassion

Normally when I write a blog, by the time I reach the end the title will have presented itself to me, it just comes naturally. Sometimes though, that doesn’t happen. My last guest blog about the process of interviewing for the charity adverts was one of those pieces where the title remained elusive. 

I reached out to the other UKCVFamily volunteers to see if they could come up with something, and they did NOT disappoint. The suggestions that came through gave me so much inspiration beyond the task at hand and here we are, acting on that inspiration. 

I wrote that I felt I needed to volunteer to be in the adverts, and I now understand why. What happened to each of the injured and bereaved is at best controversial, at worst something that should not be discussed. Of course, it absolutely should and needs to be discussed, and that’s where there is a problem.

Many have had experiences that make that little inner critic query if they should continue to mention what happened to change their health and life circumstances. Sometimes it’s an eye roll or an awkward silence, sometimes it’s incredulity, others it can be a vicious word or an angry rant. Perhaps even a comment that the other doesn’t mean to be harmful, such as ‘I’ve had 6 and I’m fine, how weird’. 

This is probably a good point to raise the elephant in the room: censorship. This is global, it’s oppressive and it’s unjust. But it’s real and it means that quite often it doesn’t matter just how much we talk about what happened to us, we still go unheard. The censorship was such that it took me nearly 2 years to find UKCVFamily. I struggled, really deeply struggled, to survive that period, believing I was the only person in the world suffering in the way I was. 

Have you ever been in a group social situation, having a conversation, and you speak but are spoken over? Then you slowly fade off from your sentence as everyone listens to the person who spoke over and after you? You’re left feeling put out and a bit ticked off. The more that happens, the more it impacts you mentally; You may start believing that you’re not worthy, that you’re not important or that you don’t matter. You feel incredibly small and insignificant. THAT is what happens when you are not seen or heard. 

You may be reading that and thinking ‘she’s really experienced that, she knows exactly how it feels’. And you would be right, because I’m vaccine injured. Some people though manage to hold onto their voice and the belief that it can make a difference, even if no one is listening right now.

Since being injured I started journaling, and those journals I posted to an anonymous blog that I didn’t share anywhere. I didn’t think anyone would care to read them and I worried about being judged. One day my therapist encouraged me to own that blog because my voice mattered, and that my experiences, not just with the vaccines, could truly help others. 

For over 3 years now I’ve continued sharing my blogs for the world to see and it’s been a huge step in my healing. The greatest thing is receiving messages (from my very small reach) to tell me that my sharing my deepest, darkest thoughts with the world, and being so vulnerable, has helped others feel less alone. Or that they’ve shared a specific blog with their loved ones to explain what living with a vaccine injury is like for them.

I’m just little old me, one person in a sea of thousands. Imagine the outcome should all our voices be heard.

That’s why I needed to volunteer to be a part of the UKCVFamily advertising campaign. Not just to be a voice for those who fear theirs will go unheard, but to be heard and seen myself.

My life and the ugliest parts of my being revealed through this experience are out there for the world to read. I am no longer ashamed of my story or my voice. For me it was a no-brainier to sit for an interview and put a face to that voice, because out there, in this hugely unaccepting world, are others who are so afraid of going unheard that they are silent and aren’t receiving the support they deserve. 

I know my voice has power. I know every voice in these adverts has power. I also know that every single voice in this community has power and deserves to be seen and heard. They deserve to be held and nurtured, the way that Claire nurtured myself and others throughout this process. The way that UKCVFamily and its members hold and nurture everyone around them, to ensure they have a home where they are truly seen and heard. 

UKCVFamily allowed us, the unheard and censored, to share our stories with the world with kindness and compassion. The best we can hope for is that they are received in the same way. 

We didn’t choose this life, we each had plans, goals, and dreams which we now grieve. Instead, we carry each other as a community while we try and find our place in a world that doesn’t have one for us yet. That doesn’t mean we don’t belong; it just means our work isn’t finished yet and that work starts with getting more people to see us and hold us with the kindness and compassion that this community is built on.