Covid-19 vaccination experiences

I had my Pfizer booster two days ago. No sign of the lovely energy boost I got from my first AZ dose, but so far nothing negative either.

I’d absent-mindedly booked a swimming lane for the day after the jab, and as I felt fine I decided to go - again, all as normal. It’s too soon to be sure I’ve got away with the side effects, but it’s possible!

I’m so sorry to hear that some folk have had a really, really crap time of it. I’ve been mulling all morning whether I should say that I haven’t, but decided it was important to give as balanced a picture as possible of how it affects PWME. I wouldn’t want anyone to avoid it because they’ve only read about people who’ve been really poorly for months, and thought that everyone has an awful time.

 

The speed of the vaccine development was more to do with speeding up the usual delay caused by oversight committees meeting once every 3 months, that sort of thing. The science bits were done the same way as usual and the vast number of people who have had the vaccine without a problem shows there were no fundamental flaws in the process.

I think that what is happening in ME is that the consequences of the sudden immune response to the vaccine and the physical exertion involved in getting the jab are leading to serious flares of ME. That every dose of vaccine has a complicated interplay with the state of someone's ME on the day. It is probably true for everyone who is ever vaccinated but only shows in our weakened state.

I am sorry some people are having such a hard time of it. And it is another burden of ME that we have to consider risking our health now against risking the effects of covid. Trying to work out exactly what is going on in our bodies helps me work out a plan for myself, basically what I have been doing since I've had to be my own doctor all these years.

ME is so complicated that even with good medical input may never be able to sort out the dilemma.

 

It isn't just people with ME who are having these long lasting adverse reactions to the covid vaccines. I've met many people who were living normal 'healthy' lives until they had the vaccine and now they have neuropathy, severe tinnitus, chronic fatigue, and in some cases all three.

 

I think the phrase that most aptly describes it is you have to suck it and see if its a lemon.

 

:[. is that more than with most vaccines i wonder? if i were healthy i'd take the risk of rare effects. but idk if we are getting good statistics? [ETA: a common seeming specific list of symptoms?]

one thing that disturbs me is that s4me is a relatively small sample of science-oriented pwme etc. with a relatively high proportion of long term effects, suggesting that pwme have a relatively high proportion.

i hear rumors about klimas studying which subgroups of m.e. will do ok with vaccination, or low doses, or new vaccines, or questions about whehter it's dose vs. lipid nanoparticle vs. the nature of the immune reaction to the epitopes, etc. but no specifics.

and i'm not seeing studies flying by on s4me about we tested m.e., mcas, oi, non-histaminergic angioedema, allergies, mold exposure victims, pesticide victims, different severities of m.e., lyme, etc. which suggests that they are not being done. they should be imo.

 

Are you sure you want that booster? The concept of vaccination was one of humanities’ great achievements, each new vaccine is subject to Reality’s confounding. This one may create reactions different from those that have been proven for a decade plus, reactions bureaucrats are in no great hurry to understand.
I like vaccines, make no mistake. I didn’t wait to get this one, that was a big mistake.

 

That may be because the purpose of vaccines isn't to protect individuals, they are to protect populations.

The effects on individuals are not seen as problematic, especially if those individuals are seen as not economically productive, as long as the vaccine reduces the impact of what is being vaccinated against on the population.

Given that, why would anyone fund studies into the effects on various groups?

'They' not only don't care, 'they' actively don't want to know, as if they did then this may impart some responsibility to show concern, that they don't feel or want.

 

I know noting of your particulars and am not qualified to give medical advice to a mouse, much less a person. I can state that if you’re outside much and in contact with the ground or things that were in it you’re touring in Tet Country, and tetanus is not a fun thing to catch. It was called lockjaw before modern preventatives existed and it’s a painful condition, and also incurable. The treatment is supportive care, notify next of kin, and wait.

Again, I’m not qualified to give any medical advice. I just know that tetanus is completely natural, often fatal, and untreatable.

 

I think it’s not 100% only flares in M.E, it’s also the action of the medicines (the vaccines) on broken systems. Orderly systems do predictable things and react in relatively simple ways. Broken systems are dis-ordered and react in weird unpredictable ways.
e.g.: After the shots, I developed a digestive problem I didn’t have previously, even with the M.E. 6 months, still have it. I’ve heard of digestive issues post wuhan vx from others also.

 

I had neuro-inflammatory symptoms with my first Pfizer (lasted 2 days) and getting my second Pfizer at the weekend. Even though I am in relapse, have made some small gains and so I have mentally prepared myself for a potential rough ride. Was not an easy decision but I need the vaccine coverage as I want to maximise my chances of not getting covid or long covid effects. Have made a plan with my GP, who agrees there is no guarantees on what the outcome will be, have lots of meds to use if needs be, and a phone and a partner to care for me. I also want to get through this before the NZ health system is put under it’s greatest test ever. Will let you know.

I also decided not to go to the vaccination centre they are so happy and bouncy. One almost fell off their chair when I brought a support person, then another assumed I had needle phobia then I spent 15 mins explaining my illness to a GP, got 30 mins observation on a hard bed, glaring lights, people looking in…So off to the pharmacy. Quick in and out.

 

what would you have changed if you had waited? e.g. what kind of information would you have seen that would make you decide not to get vaccinated, or protocol that you would have used, or different vaccine, etc.?'

[ETA: or would you still be waiting? also in case it clarifies this is not a rhetorical or idle question. sounded like you had specific reasons.]

 

The vaccine itself can only make the immune system believe it has been infected with covid. The energy involved in that can push over a system that is barely managing and if the immune system is broken it can react unpredictably. It is a trigger to other effects. However if the system is that broken any infection can cause the same chaos. I became permanently worse every time I had a bad infection even though vaccinations have not been a bother, thank goodness.

It is dangerous to assume any new symptom is ME but ME changes in people over the years. Over the course of my illness I have had symptoms disappear for years then recur and others suddenly develop out of the blue.

 

The one vaccine I really think we should all consider, unless we acquired it naturally, is the measles vaccine. Measles has the potential to wipe out your memory T cells which means you lose most immunity. The T cells recover (unlike HIV) but it takes time and you may need to be revaccinated against everything. That would include Covid. The usual advice here though is not to be vaccinated within 14 days of another vaccine or infection. It might even be more than that for us, we just don't know.

If the measles vaccine was around when I was young and I got it I might never have gotten ME. If anyone vaccinated against Covid gets it they might have to be vaccinated against Covid all over again, and everything else.

 

Yes, a big issue in long term patients, the darn disease keeps morphing.

 

I'm fully aware of this

There is a revised recommendation here that states that it's not necessary to update every 10 years, but now revised to 30 years. I read another study (which I can't find atm) that states we are protected up to 40 years. I'm at the 30 year mark to update my tetanus and will consider it later. I want my shingles vacc first.

 

During my ME onset 30 years ago I had the Rubella and Tetanus jab on the same day. One in each arm, but it was the after the second Hep B jab 2 months later that I could hardly walk 2 blocks.

I'll never know if any of these vaccines or timing of the vaccines made ME worse long term. Who knows. I had no issues with 2 Pfizer jabs, and I was in full viral mode on both days of my jabs.

 

What do you mean by this?

 

I have been dealing with a vestibular virus for over a year and half, on the day of my Pfizer vaccines I had fever sores and swollen glands etc.