the taboo and complexity of vaccine injury — fighting to become a human data point
This is unusually a personal post, rather than work. This week I am being represented as a member of a group of ‘core participants’ by laywers at the Covid Inquiry. That’s something I never thought I’d be writing about. And something that’s very hard to write about.
The Inquiry has been working its way through various modules and this week is all about vaccines and therapeutics. This is a big deal for me and anyone who’s been vaccine injured, or for anyone who’s been alongside someone that this has happened to, because it’s been difficult to talk about, publicly or even privately.
This module of the inquiry is just one of many in which people are representing all kinds of traumatic and avoidably tragic experiences. In writing here about vaccine injury I am just giving voice to what I know, and not to elevate this above all the other issues and stories that urgently need to be attended to as part of the learnings from the pandemic. Also in highlighting the failings, it does not diminish the incredible work done by so many, particularly on the front line of emergency care.
I’ve mostly kept quiet about my experience on social media, but I wanted to say something this week, to represent for my community of fellow vaccine injured folk and to acknowledge the hard work being done by everyone who’s organising and advocating. When I was initially trying to work out what the hell was happening to my body a few years ago, I was lucky to find a Facebook group online called UK CV Family and am grateful to the people who have been leading their work, and often doing it while also unwell.
Vaccine injury is not easy to talk about because it’s become a taboo. There is such a lack of nuance in discussions about vaccination and a lot of conspiracy theories and total nonsense flying about. There is an acute need for people to trust vaccination and to keep getting vaccinated, not just for Covid but for other illnesses like measles that we’re seeing rise in case number due to a decline in vaccine uptake.
Some facts. I am pro-vax and science. Vaccines are an amazing technology that save millions of lives and can even eradicate diseases with sufficient take up in a population — eg smallpox. I am also someone who became unwell directly after the Covid vaccine and have not yet recovered. All these things are true. We need to be able to talk about this kind of complexity but as a society we seem to be unable to handle complexity without aggressively defaulting to fearful and entrenched positions at either end of spectrums of belief or evidence.
It’s a well accepted fact that all medicines and therapeutics can have side effects that differ from person to person. Some adverse responses are mild and short term and some are long term, life changing or in rare cases, fatal. We know this every time we open a new box of pills and read the leaflet, whether we can buy it over the counter in a pharmacy or on prescription from the doctor.
One major issue with the attitude to vaccine injury as I see it, (and I am obviously simplifying here), is that the system is so understandably desperate for everyone to get vaccinated, that it lets any potentially unhelpful data fall through the gaps. I’m not talking solely about allergic reactions, but also the acute fatal and life changing blood clot cases, as well as the less discussed type of long term adverse health responses that I and many others are living with.
Yes, it’s rare to experience more than a fluey couple of days and a sore arm after a jab. But when you are vaccinating a population of tens of millions people like we did for Covid in the UK, even a rare, tiny percentage of millions, equals a significant number of thousands people who could be affected. Yet this basic probability is ignored by GPs and gatekeepers to health services in this country. In my experience, (and the experience of many others like me) if you present an adverse response to a vaccine to your doctor, you are highly likely to be dismissed and worse, made to feel like you are anxious and trouble making.
Some people died after the vaccine. Many have been made unwell enough that they are not able to work, have lost jobs, homes and relationships. Those who had the resources available, have spent thousands on private healthcare to try to find treatments and diagnoses for the overwhelming range of symptoms. While there’s been a fascinating explosion of self organising citizen science, with people sharing data on the efficacy of various medicines and supplements online, there’s just as many ‘wellness’ cons out there peddling all manner of expensive non-existent products to make money off those unlucky enough to be looking for help.
Much like those with Long Covid, and people living with ME/CFS and other complex whole body chronic illnesses, the long-term vaccine injured have been neglected by the system. Vaccine injuries are an inconvenience in the drive to get everyone vaccinated, and a challenge to the medical rhetoric. We are a group of people who have been left without medical support. Worse, we have been gaslit and traumatised by our interactions with doctors, and in the wider picture, there seems to be no interest in funding any research into vaccine injury. Where is the scientific curiosity in what could be a valuable and informatively large data set of people reporting adverse responses?
In April, I will have been on this rollercoaster health ride for 4 years. I recognise and am grateful for my privilege in having an incredibly supportive partner and family and friends, and being able to use savings to access private consultants. If you’re lucky, this journey takes you to some fairly niche and specialist parts of medicine to try to find treatment, and a couple of very established Professors of their fields have said they have seen lots of people like me. Their appointments are totally oversubscribed. Unfortunately they don’t seem to be willing, for lots of complex reasons, to say this out loud or even float a question about vaccine injured patients beyond their consulting rooms.
So it means a lot, that vaccine injury will be professionally represented at the Covid Inquiry this week. I am personally not looking to blame anyone and I’m not particularly interested in suing vaccine manufacturers, as I’m fairly sure that’s not where the real problem lies. It’s more of a social and systemic issue in the practice of medicine and public healthcare. I’m not angry that the vaccine made me unwell. I’m angry that the NHS and medical profession refuse to acknowledge the possibility of vaccine injury and that there’s no energy being put towards researching it or supporting those living with it. It’s about the social contract between individuals and the state, to be supported when something goes seriously wrong. It’s true that collectively the benefits significantly outweigh the risks when getting vaccinated, but it’s not acceptable to ditch the people for whom the risks manifest.
I would like to see radical systemic change in our medical narratives and doctor-patient dynamics. To acknowledge that adverse responses to medical interventions do happen, however rare, and to listen, and record and share the data when a patient reports that it has happened to them.
The Yellow Card system which is supposed to record and track reports of adverse reactions to medication, doesn’t seem to me to be proactively or transparently monitored. Nor is the Vaccine Damage Payment Scheme (VDPS) fit for purpose. The complexity of what I perceive in myself to be a wonky immune response to a vaccine, can trigger illness that takes so long to be diagnosed, that years later, it’s very hard to produce direct evidence of causation rather than correlation to satisfy the compensation scheme. Even doctors who do join the dots seem to be unwilling to state that their patients have been vaccine injured. On top of that, the definition of disability to qualify for compensation needs urgent review.
And for anyone wondering, the data we do have from the number of people applying to the VDPS shows there’s been more than double the number of claims made for Covid vaccinations than for all other vaccines combined in the previous 40 years. I don’t know if this is simply proportional to the scale of vaccination for Covid compared to the rollout other jabs, but I sure do hope someone is looking into it.
I have learned in the last few years researching all this for myself, that every illness in the NHS has a different code that gets logged on the system for patients. So if your illness has been marginalised or psychologised, like in ME/CFS, or is being ignored for some apparently political reason, or through systemic neglect, like Long Covid or vaccine damage, it doesn’t get allocated a code. So it effectively doesn’t exist — your data and health experience can’t even be recognised in the current system. My last four years of health collapse has not been allowed the legitimacy of an NHS code. We are barely allowed to be even be recorded as data points, let alone viewed as humans and patients to be researched or treated.
Sadly, despite the best efforts and massive amounts of work and good intention from those representing anyone harmed in the pandemic, by any means, I am not convinced that much action will come from the Covid Inquiry, or at least not soon enough. But meantime the best I and others can do is to break some taboos, speak this out loud and try to navigate through the complexity with hope.
An update for anyone sufficiently interested - a much more sophisticated overview is here, where you can watch KC Anna Morris presenting the introduction at the inquiry.