Advocacy: Our very first blog post for our new website and UK CV Family's recent correspondence
Updated: Sep 9, 2022
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 email@example.com 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.