4 ms·

There are people with long term issues starting right after vaccination. Not safety issues, which everyone and their dog studies, just multi-month constant pain

by megous 5y ago

There are people with long term issues starting right after vaccination. Not safety issues, which everyone and their dog studies, just multi-month constant pain that will not kill you but just disables you from your normal life for months, that is not solvable by regular NSAIDs, as usual, and that you'll get no compensation for from anyone. I'm just interested in how common this is after vaccination, and perhaps when may this end, so I again spent a few hours yesterday to try to find some significant (N > 5000, preferably more) independent prospective studies of "mild" side effects like these of this vaccine. So much vaccination going on, so why not just give every 5th person vaccinated in some large center a link and a code to enter observed side effects after 1 day, 3 days, week, and a month, and then maybe 3 months after into some website. Maybe ask for a phone number and call them to ask, if they don't fill the form in time. Even such a stupid study design would satisfy me. No such thing on google scholar. There are barely any studies that track side effects over time. It's almost all just binary X,Y,Z side effects after vaccine - yes/no. All studies I could find are < 1000 people or in that range. The small amount of studies that actually tracked side effects over time, just track for 7 days and end with 4% people still having side effects after a week. One Czech study I found tracked side effects for a month! With 2% having still issues after a month. Well, good! No, not really, N<1000 again, and a biased survey style study. Also the fucking irony of search returning about 5-10x more so called "hesitancy" studies per a side effect survey, despite me not search for it. I'm fully vaccinated, and there's no shortage of studies about efficacy, so no problem there. But people that proclaim how well the side effects are studied, because of how many millions of people were already vaccinated just sound ridiculous to me now. Where are all the actual studies? From what can be found it just seems that very little fuck is given about serious study of so called "mild" side effects, and some guidance given on how to mitigate them, based on results. ("no compensation for from anyone" is because my country actually passed a law that allows for compensation for covid vaccine gone wrong; but with no proof of some statistical relationship, this was just another bullshit anti-hesitancy stunt from the government, and will be of no real help to the affected)

lokar 5y ago
When I got vaccinated I started getting surveys on my condition from the CDC. Daily at first, then weekly and monthly
clawlor 5y ago
> why not just give every 5th person vaccinated in some large center a link and a code to enter observed side effects after 1 day, 3 days, week, and a month, and then maybe 3 months after into some website. The CDC ran such a study. IDK about results, or how many people participated. https://vsafe.cdc.gov/en/ https://vsafe.cdc.gov/en/
- megous 5y ago
  https://megous.com/dl/tmp/de8ce131adc65333.png https://megous.com/dl/tmp/de8ce131adc65333.png Would be nice to see the results.
fluidcruft 5y ago
When I got mine, everyone was being given a paper with instructions showing how to sign up for the CDC symptom tracker. It was pretty easy and they would text you every day and ask you about symptoms etc. Eventually it tapered to weekly. After the second shot you updated that and it started asking you daily again. I got a prompt a few weeks ago (multiple months after second shot).
walterbell 5y ago
At this point, a practical course of action would be to ignore dialectical pro/con arguments from paid and unpaid influencers on both sides, along with conflicted institutions that even on their best day cannot keep up with the pace of modern society. Can we create an open-source tool that supplements the much-criticized VAERS, which is at least government (i.e. taxpayer) funded, regulated and provides open data for developers? Use standard analytics to extract the most common side effects, then start collecting crowdsourced data not only on side effects, but most importantly, on TREATMENTS and MITIGATIONS for those, especially the mild-but-life-affecting ones that don't justify R&D with future billion-dollar revenue streams.
- megous 5y ago
  That would be actually nice!
tialaramex 5y ago
It's true that systematic surveillance of vaccine side effects is poor. For example, even when HPV vaccination of teenage girls became a thing, one of the obvious side effects you'd guess will freak out teenage girls (changes in menstruation) wasn't tracked very well. We genuinely don't know beyond "Clearly not drastic enough that it caused significant medical problems" whether this is something that was noticeable above background levels. However one problem we have is that for mere side effects ("My arm aches a bit", "My period was a week late", "I feel kinda sleepy in the morning") we don't have good baseline data to compare with. I'd quite like to see someone study, e.g. if we change the Facebook blue colour slightly, and ask a study cohort, what medical "side effects" do they report for that? Clearly someone in a large survey population will report that their right thumb hurts now, and we can reason (but not prove) that's not going to be a direct result of the CSS change, but measuring what this noise looks like would provide a baseline for low risk vaccinations.
- megous 5y ago
  Though at least with pain, you could compare with previous reports from that same person. Pain started day 1, never subsided until 2 months after. Pain starting at 2 months is probably not a side effect, unless it's something that consistently shows up in the data after the same period of time since vaccination (background noise would not). Maybe add a self-reported intensity scale for the symptoms. Anyway, I can see why studies like these can be hard.
- megous 5y ago
  One other reason more studies would be useful, is that for the person I know, this happened after the first dose. That means that at the moment there's just no reasonable way to decide whether it's safe to get a second dose or not. If there were studies that would show that almost nobody has a lasting head pain post vaccination, then one could conclude it's probably just a super weird coincidence, and take a risk with a second dose, to at least get the full protection against covid-19. Without data the most prudent thing is to do no further harm to oneself, and live with increased risk of infection and all the restrictions and increased costs that are put on unvaccinated.
ljf 5y ago
I guess we can look to places like Israel where there is nearly 100 percent, and the UK where there is a very high vaccination rate esp in the over 50s. If you go to the gp/doctor and you tell them you are suffering issues after a vaccine they have to (by law) pass that on to the regulator and to the vaccine manufacturer. In Israel and in the UK reports to doctors about longer term side effects of the vaccine are within and below the expected ranges. Reports on twitter may be high, reports to doctors remain low. You can draw your own conclusions.
- megous 5y ago
  Yes, but where are the data? What low means? What is expected range? Just 1% would be a lot of people to have longer term side effects. Etc.
  - ljf 5y ago
    https://www.gov.uk/government/publications/regulatory-approval-of-covid-19-vaccine-astrazeneca/information-for-healthcare-professionals-on-covid-19-vaccine-astrazeneca https://www.gov.uk/government/publications/regulatory-approv... Question, do you personally know anyone with long term health issues that they believe we're caused by the vaccine?
    - megous 5y ago
      Yes. That's the reason why I'm searching every once in a while for some studies.
      - ljf 5y ago
        I feel your pain, my wife got long covid back before that was at least accepted to be a thing. At first doctors are very dismissive, but gradually there were a critical mass of people able to demonstrate measurable symptoms. Here is hoping that somehow your friends symptoms pass soon and are mild. After seeing what long covid can do to a healthy 40yo woman with no preexisting conditions, where no one understands them at first, I can imagine the stress.

by megous 5y ago

lokar 5y ago

When I got vaccinated I started getting surveys on my condition from the CDC. Daily at first, then weekly and monthly

clawlor 5y ago

> why not just give every 5th person vaccinated in some large center a link and a code to enter observed side effects after 1 day, 3 days, week, and a month, and then maybe 3 months after into some website. The CDC ran such a study. IDK about results, or how many people participated. https://vsafe.cdc.gov/en/ https://vsafe.cdc.gov/en/

megous 5y ago
https://megous.com/dl/tmp/de8ce131adc65333.png https://megous.com/dl/tmp/de8ce131adc65333.png Would be nice to see the results.

fluidcruft 5y ago

When I got mine, everyone was being given a paper with instructions showing how to sign up for the CDC symptom tracker. It was pretty easy and they would text you every day and ask you about symptoms etc. Eventually it tapered to weekly. After the second shot you updated that and it started asking you daily again. I got a prompt a few weeks ago (multiple months after second shot).

walterbell 5y ago

At this point, a practical course of action would be to ignore dialectical pro/con arguments from paid and unpaid influencers on both sides, along with conflicted institutions that even on their best day cannot keep up with the pace of modern society. Can we create an open-source tool that supplements the much-criticized VAERS, which is at least government (i.e. taxpayer) funded, regulated and provides open data for developers? Use standard analytics to extract the most common side effects, then start collecting crowdsourced data not only on side effects, but most importantly, on TREATMENTS and MITIGATIONS for those, especially the mild-but-life-affecting ones that don't justify R&D with future billion-dollar revenue streams.

megous 5y ago
That would be actually nice!

tialaramex 5y ago

It's true that systematic surveillance of vaccine side effects is poor. For example, even when HPV vaccination of teenage girls became a thing, one of the obvious side effects you'd guess will freak out teenage girls (changes in menstruation) wasn't tracked very well. We genuinely don't know beyond "Clearly not drastic enough that it caused significant medical problems" whether this is something that was noticeable above background levels. However one problem we have is that for mere side effects ("My arm aches a bit", "My period was a week late", "I feel kinda sleepy in the morning") we don't have good baseline data to compare with. I'd quite like to see someone study, e.g. if we change the Facebook blue colour slightly, and ask a study cohort, what medical "side effects" do they report for that? Clearly someone in a large survey population will report that their right thumb hurts now, and we can reason (but not prove) that's not going to be a direct result of the CSS change, but measuring what this noise looks like would provide a baseline for low risk vaccinations.

megous 5y ago
Though at least with pain, you could compare with previous reports from that same person. Pain started day 1, never subsided until 2 months after. Pain starting at 2 months is probably not a side effect, unless it's something that consistently shows up in the data after the same period of time since vaccination (background noise would not). Maybe add a self-reported intensity scale for the symptoms. Anyway, I can see why studies like these can be hard.
megous 5y ago
One other reason more studies would be useful, is that for the person I know, this happened after the first dose. That means that at the moment there's just no reasonable way to decide whether it's safe to get a second dose or not. If there were studies that would show that almost nobody has a lasting head pain post vaccination, then one could conclude it's probably just a super weird coincidence, and take a risk with a second dose, to at least get the full protection against covid-19. Without data the most prudent thing is to do no further harm to oneself, and live with increased risk of infection and all the restrictions and increased costs that are put on unvaccinated.

ljf 5y ago

I guess we can look to places like Israel where there is nearly 100 percent, and the UK where there is a very high vaccination rate esp in the over 50s. If you go to the gp/doctor and you tell them you are suffering issues after a vaccine they have to (by law) pass that on to the regulator and to the vaccine manufacturer. In Israel and in the UK reports to doctors about longer term side effects of the vaccine are within and below the expected ranges. Reports on twitter may be high, reports to doctors remain low. You can draw your own conclusions.

megous 5y ago
Yes, but where are the data? What low means? What is expected range? Just 1% would be a lot of people to have longer term side effects. Etc.
- ljf 5y ago
  https://www.gov.uk/government/publications/regulatory-approval-of-covid-19-vaccine-astrazeneca/information-for-healthcare-professionals-on-covid-19-vaccine-astrazeneca https://www.gov.uk/government/publications/regulatory-approv... Question, do you personally know anyone with long term health issues that they believe we're caused by the vaccine?
  - megous 5y ago
    Yes. That's the reason why I'm searching every once in a while for some studies.
    - ljf 5y ago
      I feel your pain, my wife got long covid back before that was at least accepted to be a thing. At first doctors are very dismissive, but gradually there were a critical mass of people able to demonstrate measurable symptoms. Here is hoping that somehow your friends symptoms pass soon and are mild. After seeing what long covid can do to a healthy 40yo woman with no preexisting conditions, where no one understands them at first, I can imagine the stress.