Should we be talking more about adverse vaccine reactions?

[flipdip]

Hello!

I'm hoping to just gauge some general opinions on whether people think there should be more in the media about people who have had an adverse reaction to the Covid vaccine.

I'll start by saying that I am one of these people - I had a very serious reaction to my first dose and almost lost my life. I was in hospital for five weeks and have now been home for just over two. I have a long recovery ahead of me and damage to my heart and liver.

I've felt like I shouldn't tell people why I was ill, or what made me so poorly and I feel like this secrecy about adverse reactions is being enhanced by the lack of coverage. Obviously we want and need as many people as possible to have the vaccine, I fully support this, and reactions like mine are so incredibly rare (at the last official Govt count just 6 people had the same condition as me). But I can't help wondering if the media should be showing a more balanced picture so that those getting the vaccine are well-informed and know what to look out for if they did have a reaction - and not just the signs of blood clots which has been discussed.

It's a dodgy topic perhaps to raise as I don't want to get into a debate on having the vaccine or not - just wondering if people think we should talk more about when it goes wrong?

Thank you!

@Pyewackect

What are you saying, don't take the vaccine ?.

I think it’s pretty clear that’s not what @flipdip is saying.

I hope you’re recovering as well as you can OP.

I think this mirrors the mask situation to some extent. Those with legitimate issues have their difficulties hijacked by those with agendas that are less than honourable and based on very fragile reasons largely driven by defiance.

Vaccines have and always will come with risks, just like any substance that we put in our bodies. That’s why we’ve had a government vaccine compensation fund for years prior to covid. I knew a gentleman who was damaged by a bad batch of vaccines about thirty years ago. It’s awful on an individual level but on a population the benefits far outweigh those risks.

@Grimbelina I don’t think it’s true to say that adverse reactions aren’t investigated and solutions looked for. For instance, recently German scientists announced that they had possibly identified the issue with AZ/CVT and had a possible solution they are testing.

It’s just not given the same amount of attention in the media unfortunately which is where I lay a large proportion of the blame for many, many things - not just covid/vaccinations!

I wouldn't want discussion of adverse reactions to stop people getting the vaccine

Unfortunately that is likely to be what will happen.

You clearly have the intelligence to understand how very rare indeed your reaction was - and I commend you for not joining the ant-vaxxer bandwagon, but discussing this rationally, which must be very hard for you.

I do think that attention has been drawn to some of the adverse effects, and also feel that it has been sufficient, as such reactions are so very rare indeed and we know the only way out of this pandemic is to present the virus with a population of vaccinated people who refuse to act as hosts.

I hope that your recovery continues apace and that you will soon be back to full health.

I'm so sorry you have been so ill.

I'm slaps so sorry you get stupid ignorant anti vax posts when your OP makes it clear you aren't suggesting not having it and they just can't be areas to read it.

We should be having conversations about all things. Especially medical stuff and the risks etc so people can make their own decisions. And right now covid is the big topic and covid vaccines.

The truth I think is people are scared of COVID and therefore scared to accept the "way out" (vaccines) can also carry fatal consequences or life long side effects.

That fear is what drives people reactions that you are wither pro vax or against.

But it's not an either or.

I am concerned. Did you have GBS?

I couldn't go through it again.

It should be talked about but needs to be discussed in context. As you said, it’s very rare with only 6 out of many millions.

I guess I would say possible adverse reactions should be presented patients as part of an information pack, like what you pull out of a medication packet. Rare and common Adverse effects are always listed for every medication. I feel it should be the same for any vaccine. Whether people read them or not should be their choice, just as with oral medication packets.

I agree OP. Of course the vaccine will be saving many lives, and it's important to keep hold of that, but there have been quite a few very unpleasant reactions and shouting over people who want to discuss them really doesn't help hesitant folk feel confident. And it encourages conspiracy theories about cover ups.

Unfortunately many people are very bad at assessing risk and weighing up pros and cons - see for example the hysteria on MN if a poster says she doesn’t follow SIDS guidelines to the letter as her baby won’t sleep that way. Some people see things as divided into “safe” and “not safe” and are uncomfortable with any grey areas where neither side is “safe” 100% and you have to make a choice.

So whilst, rationally, there should of course be more discussion of side effects and warnings of what to look out for, in reality this might well lead to a lot of people refusing the vaccine and probably greater harm overall. So I can see why it isn’t being publicised.

That said, nobody should be told off for telling the truth about what happened to them. Especially when done in such a proportionate way as the OP.

Cornettoninja in my experience, and in many of the ME sufferers in the same situation, issues really aren't acknowledged or reported. Therefore it is true in my experience.

Many of us are still glad we had the vaccine as we know the risks we could possibly face if we did get Covid. Many of us are also incredibly sympathetic to people with Long Covid and would like to prevent others getting sick/dying.

Most of us are also very, very fed up with not being listened to, sometimes over decades of ill health. Unfortunately your reply doesn't surprise me.

I feel like the reactions to the vaccine are being discussed a lot in real life. Pretty much everyone who has the vaccine discusses how they felt afterwards. Everyone I know anyway. I know a few people who have reacted badly, some taking a few weeks to recover. it's just said as a note so that people are aware. I don't know anyone who's been put off the vaccine - they are just aware and perhaps choosing the timing of it to anticipate feeling below par. I had mine on a Friday so i'd have the weekend to take it easy if need be, although in the end I was fine.

I'm terribly sorry you had such an awful experience after the vaccine and I really hope you continue to recover. But, to be honest, I'm not sure how more media coverage of experiences such as yours would be helpful for most people. As you yourself say, only 6 people have had the side effects you have. How would knowing about your situation have helped me? I was given a leaflet with possible adverse effects on it and the because your condition was so rare, knowig about it in advance wouldn't have stopped me getting the vaccine.

I completely understand that you want to talk about it - of course you do and should, you've been dangerously ill - and if you wanted to talk to the media about it, I would absolutely see why. But I don't think it would 'help' other people.

WHO defines a ‘very rare’ adverse drug effect as 1 in 10,000 (about the same risk of dying from childbirth in the UK). And yet our instinctive reaction when someone announces a pregnancy is to congratulate them, not recoil in terror.

So how to communicate a risk of, say, 1 in 2 million from a vaccine? Most people simply can’t grasp the rarity of that or put it into context.

So long as side effects and risks from other non mandatory things are included such as the pilll, pregnancy, air travel. Just to put it all into perspective.

@flipdip, I'm so sorry that you've been through such a terrible time. I had my first AZ at the beginning of March and i'm still poorly. Head/neck/face/ears/tinnitus. Not in your league, but nonetheless very very unpleasant.

I have spent a small fortune trying to get well again, to no avail, although I do think the pain is a little easier and then it kicks off once more.

Apparently its anxiety, all in my mind and I've always been a malingerer.

Hey ho

Most of us are also very, very fed up with not being listened to, sometimes over decades of ill health. Unfortunately your reply doesn't surprise me

Hang on, what?

My reply stating that developments are going on behind the scenes all the time is offensive? How exactly?

government vaccine compensation fund for years prior to covid

Does it pay out in a good amount of time to prevent things like being evicted if someone loses their job or is a more of a hoop jumping excercise

@Cornettoninja thats excellent news.

I’m so sorry for what you’ve been through, OP. I wish you well. It’s a trauma so I hope you’re giving yourself plenty of time to emotionally and mentally recover I hope you have support around you too. Of course your experiences are valid and should be heard. That said, I’ve seen so much talk about adverse reactions to vaccines - both online and in my real life. This isn’t a negative thing (to discuss), it’s just been a constant topic of conversation. You’re going to get a few bonkers people who try to shut you down but they’re the minority and I don’t think open discussion in an informal environment is regularly shut down. Clearly, it’s important for all views as long as they’re not offensive.

The sad issue is people like you who have clearly been through the mill. Then, you get people who’ve felt rough for a couple of days. That’s nowhere near comparable. Of course we talk about both but I don’t think they should be lumped together. Your experience was clearly scary and horrible and I hope you’re recovering as well as can be.

When trying to explain risk to people, I sometimes say "Would you bet on a horse that had a 1 in 2 million chance of winning?" - it does put it in perspective.

Just about all medications have small chances of rare but serious side effects. The information should be out there and communicated by medical professionals, sure, so people can make informed choices. If you're asking if there should be wider press coverage, I'd say no because 1. Rare side effects are already being covered/talked about enough in my opinion. 2. The press is more often than not reckless, ill informed and scaremongering when it covers things like this.

@MercyBooth

government vaccine compensation fund for years prior to covid Does it pay out in a good amount of time to prevent things like being evicted if someone loses their job or is a more of a hoop jumping excercise

Probably not no. It’s absolutely not perfect but at least it’s a recognition that there is always a risk with vaccinations.

So many people are so black and white when it comes to covid :

Covid will kill you
Everyone has to get vaccinated and if you don't you are a selfish anti-Vaxer

The media / the people on this site

And nothing in between

For a vaccine to make someone so poorly and to kill people it should be stopped in my opinion.

But the government don't care about those 'few' who ended up on hospital or died!

I honestly don’t think there has been any lack of discussion of side effects on this forum anyway

The problem with az risks is they were incomplete.
As they didnt know whether it would affect second dose.
Whether if it did others would be allowed a different one.
Starting off as say 1/mil ending as say 1/80k and varying by age.

Mia- could it be anaemia - iron or b12?
As these are used to make antibodies