Covid-19 vaccination experiences

ME is so variable that it is impossible to predict any one individuals response to any vaccine on any given day. Research may give us some idea of what is going on in our bodies but basic biology is more important for predicting how a vaccine might work than spending money on vaccine research because that is approaching from the wrong direction; we can make predictions about vaccine/ allergy interactions because we know something about the biology of allergies.

If we look at reactions to vaccines most people with ME are fine with them so there is no help there for why it goes so wrong for some. Past reactions don't appear to help as much as they should either way, good or bad.

It will always come down to a probability equation. How is my ME at this moment? What is my risk of getting the disease? What is my risk from having the disease? How is this vaccine affecting the general population?

There is very little certainty in ME
 
Mithriel said:
If we look at reactions to vaccines most people with ME are fine with them so there is no help there for why it goes so wrong for some.
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Will be interesting to see if this turns out to be a clue to different sub-types of ME pathogenesis. Eg more likely to affect those who are a "long COVID or similar / micro-clot aetiology" sub-type. Though I doubt it will be as straightforward as that.
 
Samuel said:
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i need some source of information that is reasonably reliable to make the decision and if so which vaccine to do. and small doses if that is a good idea.
i have a significant compromised level of activity. i want studies, low doses, etc. i am really concerned.
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All of the vaccines available are causing the same issues in people, it isn't just one specific vaccine that is the problem. And it isn't just people with ME who are having the reactions. Having met many people online who are having long term reactions to the vaccines, quite a few have been told by their neurologists that it wouldn't have mattered which type, brand, or dosing amount that they were administered, in all likelihood they would have had the same reaction. It is the body's reaction to the vaccine, rather than the vaccine itself that is the issue.
 
Trish said:
I admit to some trepidation, having read of others' bad experiences here. But I don't see an alternative for us. We've had such limited social contact and help for the whole period of the pandemic, and the pandemic isn't going to end completely. So it's vaccination or permanent shielding.
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Isolation is a huge (or yuuge) health risk. It's also no way to go through life if one has any choice at all. It's something I'd rather have less knowledge of.
 
TigerLilea said:
All of the vaccines available are causing the same issues in people, it isn't just one specific vaccine that is the problem. And it isn't just people with ME who are having the reactions. Having met many people online who are having long term reactions to the vaccines, quite a few have been told by their neurologists that it wouldn't have mattered which type, brand, or dosing amount that they were administered, in all likelihood they would have had the same reaction. It is the body's reaction to the vaccine, rather than the vaccine itself that is the issue.
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Which is odd, since it seems to be the covid/wuhan virus vaccines causing such reactions at far higher rates than those prior. Offhand/anecdotally, I heard from my GP that people who were otherwise ordinary (not edge cases like us) and who had no issues with the childood vx, flu shots, travel immunizations etc have had lingering effects from this vx. This is in a city where pretty much everyone got either Pfizer or Moderna, gov't bought the 'top of the line'. That in itself was well intentioned, but there's an old and surprisingly sentient saying about good intentions.
So perhaps something about the generation or existence of antibodies to the virus which causes 6 months + of systemic degradation. I hope it's not the B and T cells causing this, if so .... exit all hope. But .. some people just shrug off an actual infection and have strong immune memory, yet no side effects. It's like they caught a 48 hour cold, then done.
 
Dom said:
@Sisyphus

I actually keep changing my mind. Dr Weir and Dr Jaeger seem to not be recommending vaccination for ME and LC patients for different reasons. I haven't even recovered fully from the flu vaccine yet but almost there. I don't think 3 colds in 8 weeks have helped much. But when the colds are gone I feel much stronger.

Anyway the new variant might utterly derail the entire vaccination schedule. I guess this was my greatest fear.

What I'd really LOVE is some data on double vaccination and how less likely you are to be hospitalised, get long covid, end up on oxygen, etc. That would make it so much easier to make a decision about the booster.

But I really don't want a 3 to 4 month relapse again on the back of this booster and I'm very concerned about long term injury. Check c19vaxreactions.com the mRNAs seem much worse making over 80% of reactions.

I'd prefer a moderna half dose. But I have not had much luck finding anywhere that will give me one in the west midlands.
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am not an md and all that, but I'd wait for a booster tested and approved on people sorta like us, or at least a booster targeted to the Delta family and offered in lower doses for the immuno-messedup. That's a new medical term as of this moment. Much as I think vaccines are an amazing plus for civilization, I not into hair of the dog medicine.
 
Life equals isolation.

Just the way it is, given people are what they are.

Every now and then I go a little nuts so need to realign myself, which requires some form of social contact every few years.

I wouldn't say it, isolation, is a health risk tho.

I didn't get vaccinated because of the virus, or any potential effects on me, I got vaccinated because I don't trust society to behave itself and could see a likelihood of severe and damaging discrimination against those who weren't vaccinated.

E.g. what it was decreed that social tenants must be vaccinated, as a condition of renting. I could easily see that happening if things had gone a little differently. Or if supermarkets insisted on it for delivery.

ETA - it seems Germany is going down the predicted path - the unvaccinated are to be banned from shops (presumably not all shops, just the ones, all the ones, in Germany).
 
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I like the word immuno-messed up, sort of sums it up for us.

I had my second Pfizer 5 days ago after having a reaction to the first shot - complete numbness of the ulnar nerve distribution of my vaccinated arm and inflammation of the elbow bursa, lasted five days, annoying as very painful elbow which is hard to position for rest and sleep. I am on continuous anti-inflammatories and really what could they do, wasn’t worth the trip to the GP, I reported it to the vaccine monitoring agency. The main thing for me is that I had full movement and it went away….was more fatigued for a few days and usual myalgia/arthralgia.

So no repeat this time, just a sore arm at injection site. Hugely relieved. I did better than most of my “healthy” friends who took to their beds after the second Pfizer, and my partner who felt and looked unwell.

So I just don’t get it, immune systems, so individual.
 
I've realised I haven't reported my experience yet - it wasn't remarkable, but I guess it's good to record those too.

I had two Pfizers, I think the first one was slightly worse, with a sore arm for a week and glands up in my armpits and neck, and feeling more tired than usual. The second one caused only very minor side effects, over in a couple of days.

I can't recall my son (also with ME/CFS) complaining about anything resulting from his two Pfizers.
 
Well so far the side effects haven't been too bad. I was having to take in big lungfuls of air in the evening and my chest felt tight - assume that's a heart issue. But it's gone today. Other than that a very sore arm and very hyper. 20 minutes after my jab I started feeling very full of energy, almost hyper active. Which has sort of continued. This is the same as my 2nd AZ jab. Used to preceed a crash but I think I'll be ok this time.

Legs felt very odd on friday evening, like the blood wasn't circulating as well as usual.

But all these symptoms apart from the chest issues (not enough for me to go to A&E mind) were very mild. Not really having any major issues. Had a pretty big headache day 1.

Day 2 went really well, don't feel sleepy - but do feel very grumpy, rather angry, probably immune mediated inflammation and a bit depressed too.
 
Trish said:
Well, I now know the answer to my question. Knock on the door a hour ago. Paramedic come to give me by booster. Pfizer this time. And I managed to persuade him to do my daughter's booster too while he was here. No advance warning - as before with the 2 AZ doses, he just turned up.

With the AZ I had only a very slight reaction to the first dose and none with the second. Daughter had some symptoms for a week or so, but nothing too awful.

I'll let you know in a day or 2 whether we have any reaction to the Pfizer booster.
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wondering how you're doing Trish? hope you're both ok
 
JemPD said:
wondering how you're doing Trish? hope you're both ok
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Thanks, we're OK. Daughter and I both had our Pfizer booster done at home 4 days ago. It was 7 months after we both had our second AZ dose.
We've both had a sore arm for a few days, and our usual ME muscle pain has increased significantly with added stabbing pricking sensations. I had a day of nausea and loss of appetite yesterday, both probably more exhausted than usual. Not completely back to our normal yet, but not too bad. No headaches or scary stuff. I hope we're past the worst.
 
I'm on Day 3 now, lots more energy today. Evening on Day 2 I had a full on viral attack of pain all over my whole body for about 3 or 4 hours - that was pretty nasty while it lasted.

Today feel really good, but I did start getting chest pain after moving some stuff into the living room. I do think I've got some chest or heart inflammation, but obviously can't be certain.

My arm feels loads better today too and no nasty pain when using it, it was extremely painful last night.
 
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