Covid-19 vaccination experiences

That argument was the one used against us with harms from GET.

Having seen it used in that context against me makes me resistant to it here unless we have some evidence that it is likely.

The ME association poll may not be worded well but I can't see why patients should be any less believed over adverse reactions to a vaccine than GET.

If it is one vaccine over another we should know and someone should be picking this up and looking at it.

 

Also heard this...Mrs sloth had no reaction at all, her sister was in bed for two days and is still struggling 10 days later ...both having AZ

 

Glad 'More or Less' never covered the PACE trial and harms to patients by GET then if they could make a joke about adverse reactions.

I'm on Day 17 now. Nothing like a ME or post exertional problem.

 

Just because an argument was used wrongly against us in terms of GET doesn't mean it's never true. That's what BPSers do, take something that's sometimes true and twist it.

I think if you operate any customer service line or answer the phones for any service you find, no matter how good the service is, more people are far more likely to get in touch with complaints than to tell you how well you've done.

I only posted here that I hadn't had any issues because I was aware how concerned some people are about being vaccinated. I was worried myself as I'm not usually allowed the flu jab.

Many people won't have voted in the MEA poll because they don't routinely visit the MEA site, many will be too unwell thanks to their ME to come forward even if the jab hasn't made them worse.

If we were to gain an accurate picture then you would need to find out from everyone who has had the jab & not just those who have come forward.

While it's an interesting topic, I don't think its wise to give a false impression of how good or bad the jab can be - especially if it might put people off having it leaving them potentially vulnerable to life threatening illness or hospitalization that is guaranteed to make ME worse.

Edit - replaced wrong word

Edit 2 - sorry to hear you have had a bad experience ukxmrv and not in any way trying to diminish it or question your right to describe it.

 

Mr B and I had AZ eight weeks ago administered by the same nurse as consecutive patients. He had a sore arm for 10 minutes. I have still not reached my normal and the severe symptoms I have are different from and in addition to my usual ME symptoms.
Sorry you are experiencing the same @ukxmrv.

eta: I should add that I have the flu jab every year, pneumonia, typhoid, yellow fever etc as required without any side effects. It never occurred to me that a vaccine would be a problem for me.

 

I don’t think I’m back to where I was from before I had the vaccine, but am feeling a lot better now (it’s been 3 weeks I think now), than I was feeling a day or two after having the vaccine. there are other things going on so it’s hard for me to know if how I’m feeling right now, is due solely to the vaccine, but I think it contributed. And for sure, for the first 1-2 weeks after the vaccine I definitely felt a lot worse, ME got worse, and after the first 24 hours there were definite immune type symptoms and exacerbation of pain, shivering, fever etc which lasted quite a while. (I’m still having the second dose though, as I think getting covid would be much worse for me).

 

I’m thinking the same. I have severe ME that started mild and has gotten permanently worse for every virus my body has picked up. Anything else than a permanent worsening of symptoms will be worth it for me.

Also, I can’t compare myself to healthy persons taking the vaccine. Just as I need more time for everything else, I know I will need more time for this as well. I am mentally prepared for not being back to start until about 6 months after vaccine.

 

They were talking about blood clots specifically, and making the point that correlation isn't causation, and that the statistics on blood clots weren't any worse than what you'd expect if people weren't being vaccinated.

Which is odd, because according to the news in Germany, although the amount of blood clots is what you'd expect without the vaccine, the amount of blood clots in the brain is well above what it should be, even though the numbers are small. Apparently it's still a miniscule risk, especially when compared with the risk of dying from covid if you don't have a vaccine. I heard today that two German states have suspended AZ again, and that mine might be next.

The situation seems to be being reported rather differently in the two countries, and changing almost daily.

 

AZ now only being given to over 60s in Germany. Latest is that the risk of a blood clot in the brain is especially high for young women. 31 cases including 9 deaths out of 2.7 million vaccinated.

 

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.

 

Oh, good to know. As a youngish woman I got the AZ about two weeks ago. It wasn't ME/CFS that made me eligible but my non-existent hypothyroidism. It is non-existent because only my anti TPO is elevated, all my other values are within normal range and the whole thing was only discovered due to my many ME/CFS-related examinations to rule everything else out. The endocrinologist gave me a diagnosis of hypothyroidism and put me on levothyroxine to see if anything changes (it hasn't) but he himself admitted he doesn't believe it is causing my symptoms and is planning to investigate my issues further when I go back (soon). So that is how serious my hypothyroidism is, but I was very lucky that due to this I managed to get the vaccine so early. Otherwise I would have been among the last people to get vaccinated.

Anyway, I felt quite horrible for a day, I felt ill, had a terrible terrible headache and felt quite feverish although didn't technically have a fever. It was only 37.3 but my normal body temperature since my ME/CFS onset has been quite low and this has been by far the highest temperature. My arm also hurt very noticably. By the next day all my symptoms were gone. My ME/CFS related symptoms were unaffected. Overall it wasn't a bad experience, one day is nothing.

 

Not my direct experience but thrilled to hear a couple of hours ago that my son received his first vaccine dose today in New York. It was the Moderna, delivered by his local pharmacy across the road. Just a sore arm 5 hours after vaccination.

Covid rates are soaring in some parts of the US despite its extensive vaccine rollout, by 62% in Connecticut and 40% in New York over the last 2 weeks.

 

I should not give anyone personal advice but my thought would be that anti-phospholipid syndrome should be a definite indication for using one of the other vaccines, since they are available. I have just had Pfizer and they seem short of takers if anything.

 

I would give this post 100 up votes were that possible.

 

Do many seriously deteroriate?

 

Some have crashed pretty badly, others deteriorated slightly. Including some who initially got some improvement. Is it related? Nobody can tell because no one is seriously following this. It's also possible that the subsequent crash was caused by the improvement leading to doing too much and causing a relapse. But again nobody knows because no one is actually doing the necessary work. This is just people jumping on anecdotes that sound good. Again. I was told medicine frowns upon that and yet here we are. Again and again.

From informal polls I have seen, most seem to have had no change at all, with about twice as much reporting initial improvement as reported deterioration (for a rough spread of 70% no change, 20% improvement and 10% deterioration). But the data are very unreliable, short-term only, making those claims very irresponsible, we simply don't know enough yet until enough formal studies are out to weed out the outliers.

Time is important. Why is medicine so oblivious to time when it's convenient to ignore it? It is so damn annoying seeing such basic mistakes being made, always in the same direction. Without fail it's in one direction only: "rousing reassurance".

Edit: Because the numbers vary a lot and this one contradicts me somewhat:

https://twitter.com/user/status/1377080349818298369


So there is genuine improvement. Does it actually hold up? That's the question. It's enough to be sure that the vaccines are safe, as far as I'm concerned, but telling the whole truth is important.

 

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.

 

I got shot one of Moderna and felt slightly better for a couple of days, then I had a day or two of PEM.

My mom who has fibro got her second Moderna shot yesterday. She is feeling like she has a cold with aches and chills. So far no fever. She is taking acetaminophen.