Covid-19 vaccination experiences

rvallee said:
This is just people jumping on anecdotes that sound good. Again. I was told medicine frowns upon that and yet here we are.
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Anecdotal evidence is the lowest rank of evidence in Evidence Based Medicine. Ignoring for now the massive and growing problems with EBM, this suggests that medical culture has not fully embraced EBM either. Poor on science, poor on evidence, while many doctors have learned from all this, many more are still in the past. I would call this a cultural problem within medicine. I am still concerned that the massive overworking of doctors is in part causing this, combined with the work practices doctors are forced into by largely bureaucratic means, including many brief patient visits, crammed together, with no time to properly investigate things or go deeply into professional development.

Anecdotal evidence is great for giving hope (mostly false though) and raising research questions, and even for raising possibilities for individual patient care where there are no standard treatments that are working, but its no substitute for good science.

I recently ran into this problem with discussion of the standard vitamin D test (25 hydroxyvitaminD) with my doctor. He had a good grasp of the public health aspect, but failed to understand the test itself, and especially its limitations. When does a doctor get the time to investigate all the changes in medical science? Never. I mean that literally. But some do approach this much better than others.
 
Rain said:
Side track, but the Geographical difference in preferences fascinates me. In my area one is not able to choose, and people who get Pfizer seems to act like winning the lottery.
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I think we had Pfizer because we travelled 100 miles in to London to get it at St Bart's. I suspect Pfizer is mostly available at big centres where they have the facilities to decant batches from the -80º freezer. We got on to their list because a family member is under Bart's for follow-up and they said they were not getting as many takers as they could vaccinate.

I suspect that no choice is strictly the situation everywhere. However, in the context of the AZ worry I would be happy to give a strong opinion as a professor of immunology that someone with anti-phospholipid syndrome should not have AZ is there is an alternative. If you want to make use of my name please do.
 
Trish said:
I have heard some suggestion that the problem in women may be related to the higher risk of blood clots in those taking contraceptive hormones, but I haven't seen any data verifying that so it could be speculation.
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I read somewhere that this fear is supposedly unfounded because the type of blood clots associated with the contraceptive hormones are the "normal" blood clots whereas the ones possibly associated with the vaccines are a much rarer and different type.

It was some sort of medical expert answering questions from the public but I don't recall them making any reference to any hard and fast data, probably because it doesn't exist yet.

I haven't been following this closely but my general impression is that most cases are young or middle-aged women?
 
Ravn said:
I read somewhere that this fear is supposedly unfounded because the type of blood clots associated with the contraceptive hormones are the "normal" blood clots whereas the ones possibly associated with the vaccines are a much rarer and different type.
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I am afraid I strongly suspect that is designed to reassure for political reasons. The default assumption in the absence of evidence (as you point out) is that any procoagulant state like taking the pill or having Factor V Leiden or anti-phospholipid syndrome would be likely to increase risk for all thrombotic events.

If these really are 'unusual' clots then the fact that the numbers are not higher than unusual clots in control populations seems a shaky comparison. If these really are unusual then that in itself makes it likely that they are relevant.

I can see the argument that people are more likely to die of Covid than a clot from a vaccine. On the other hand if other vaccines are safer then I don't see that one can justify exposing people to any extra risk just to hurry up the herd immunity.
 
Jonathan Edwards said:
I think we had Pfizer because we travelled 100 miles in to London to get it at St Bart's. I suspect Pfizer is mostly available at big centres where they have the facilities to decant batches from the -80º freezer. We got on to their list because a family member is under Bart's for follow-up and they said they were not getting as many takers as they could vaccinate.

I suspect that no choice is strictly the situation everywhere. However, in the context of the AZ worry I would be happy to give a strong opinion as a professor of immunology that someone with anti-phospholipid syndrome should not have AZ is there is an alternative. If you want to make use of my name please do.
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@Rain

I booked an appointment at a large vaccination centre (leisure centre) so yes I thought it was a lottery win "Pfizer" - turned out they did both Pfizer & AZ --- I got AZ! So booking a vaccination centre, which normally does Pfizer, isn't a guarantee.

There's a high profile case here (N Ireland) where a person with a disability got a particular vaccine --- so there will be a system --- I guess you checked with your GP? Next step might be a consultant --- or name drop @Jonathan Edwards

I was more than happy to get an AZ in the end, but if I had a family member, who needed an MRNA vaccine, then that seems reasonable.
 
Sid said:
As someone who falls into that demographic group + my antiphospholipid syndrome, I am worried about these reports. But as an ME/CFS patient, I am also worried about ending up in a dirty, noisy hospital abusive staff with covid, or dying from it. So it's hard to know what to do.
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It's very hard and I sympathise.

I ended up with the "dirty, noisy, hospital abusive staff" when I tried to have my adverse Covid AZ vaccine problems looked at

On my first attempt I learned that this reaction occurring in some countries (with blood clots in other women in my age group) has not been communicated to A&E staff in my local hospital at all.

It was almost funny. Even after I explained it in a way a 5 year old could understand they still didn't believe me to truly get it.

Particularly enjoyed the part when I was told my problems swallowing were imaginary.
 
@Jonathan Edwards
I suspect that no choice is strictly the situation everywhere. However, in the context of the AZ worry I would be happy to give a strong opinion as a professor of immunology that someone with anti-phospholipid syndrome should not have AZ is there is an alternative. If you want to make use of my name please do.
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"I am afraid I strongly suspect that is designed to reassure for political reasons. The default assumption in the absence of evidence (as you point out) is that any procoagulant state like taking the pill or having Factor V Leiden or anti-phospholipid syndrome would be likely to increase risk for all thrombotic events."

Thank you for that @Jonathan Edwards . My daughter aged 45 falls into the risk group and hasn't yet been vaccinated. She has factor V Leiden, as do I, and I will make sure to pass on this information. I hope she has an aware GP.
 
Please your older loved ones and yourself be careful afterwards and the next day/s if you're feeling weak.

My mom had the vaccine yesterday. Just called her, someone else answered, apparently my mom was feeling weak from it, took a nap, got up and fell. :cry: Neighbors are over now helping her up. I don't know how she's doing, they'll call me later.
 
I experienced a week-long surge of energy and mental focus after my first AZ jab. I almost felt like I did prior to my suspected Covid infection in December, and the subsequent ongoing exacerbation of all my ME symptoms. This surge has now receded.
 
Jonathan Edwards said:
I think we had Pfizer because we travelled 100 miles in to London to get it at St Bart's. I suspect Pfizer is mostly available at big centres where they have the facilities to decant batches from the -80º freezer. We got on to their list because a family member is under Bart's for follow-up and they said they were not getting as many takers as they could vaccinate.

I suspect that no choice is strictly the situation everywhere. However, in the context of the AZ worry I would be happy to give a strong opinion as a professor of immunology that someone with anti-phospholipid syndrome should not have AZ is there is an alternative. If you want to make use of my name please do.
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I wanted to speak to my GP before I took the vaccine. Logged a call (took 1 hour on the phone and an attempt on their online system). However, I received a call instead from another member of staff (and I can't work out where she fits in) 4 days later.

The clinic would only do AZ. One person (a child) had been referred to Kings in London and got the Pz jab there. There were not prepared to do this even if I wanted to and did not know the procedure.

There was apparently no one in my area who knew or was responsible for virus supply they said.

In my case it may not have mattered. The side effects I have had may have been exactly the same or worse or better regardless. I will never know.

From the Health Rising website data I can see that both AZ and Pz are being reported as causing side effects , however the ones reported there for AZ are more severe and longer.

I saw a chart from the Zoe app recently which shows their system reporting more AZ side effects than Pz.

For a group of already sick patients (like ME) I think we need to know if one vaccine is going to make us worse, for how long and how badly and if possible how to make this as comfortable as possible during the side effects.
 
ukxmrv said:
From the Health Rising website data I can see that both AZ and Pz are being reported as causing side effects , however the ones reported there for AZ are more severe and longer.

I saw a chart from the Zoe app recently which shows their system reporting more AZ side effects than Pz.
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1st or 2nd dose?

I've been following quite closely how pwME reacted to the vaccines (there is a Facebook group for this) and the general impression seems to be that the first Pfizer doesn't really cause a lot of side effects, the AZ vaccine tends to cause more but it's vice versa with the second shots (and that's why I didn't mind taking AZ). But this is based on reading personal accounts, did the data show something different regarding the 2nd dose?
 
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Wyva said:
1st or 2nd dose?

I've been following quite closely how pwME reacted to the vaccines (there is a Facebook group for this) and the general impression seems to be that the first Pfizer doesn't really cause a lot of side effects, the AZ vaccine tends to cause more but it's vice versa with the second shots (and that's why I didn't mind taking AZ). But this is based on reading personal accounts, did the data show something different regarding the 2nd dose?
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I think the Zoe study shows this too. AZ worse side effects with v1 and Pfizer with v2.
 
Maybe it's just me, but I find the title of this thread confusing. If this thread is meant to be about pwME's personal experiences of getting a covid-19 vaccine, and their individual reactions (if any) afterwards, I think it could be made a bit clearer in the title.

"Post-covid-19" is a common synonym to "long covid", at least here in Sweden. To me "Post-covid-19 vaccination experiences" reads like the vaccination experiences of people who have had covid before getting vaccinated, or were suffering from long covid at the time of vaccination.
 
Jonathan Edwards said:
I am afraid I strongly suspect that is designed to reassure for political reasons. The default assumption in the absence of evidence (as you point out) is that any procoagulant state like taking the pill or having Factor V Leiden or anti-phospholipid syndrome would be likely to increase risk for all thrombotic events.
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That was my default assumption too but thanks for the informed opinion, reassuring to know. I wasn’t going to touch AZ anyway. In my country, AZ is only a minority of the vaccine inventory so getting something else shouldn’t be an insurmountable obstacle.

ukxmrv said:
On my first attempt I learned that this reaction occurring in some countries (with blood clots in other women in my age group) has not been communicated to A&E staff in my local hospital at all.
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Sorry to hear you were treated like this. Another possibility is that they know damn well but may have been told to aggressively deny any problems so the public wouldn’t turn against the vaccination programme.
 
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