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haha! My dentist has ME confused with FM too. But at least she was really good about it, albeit if she actually had the wrong symptoms...nevermind. Based on the replies in this thread seems like a half dose won't make any difference, but hoping it might illicit a lower immune response -...

Just had my moderna half dose. Apparently they are all half doses. Had a right faff at the walk in centre. Got told I couldn't have it due to age. Told them I'm in group 5. Got told can't get it if you have asthma. Told them I've got ME (look of confusion) calls doctor. Sit down lovely doctor...

I think it's dead on that the immune system is the problem. I'm high as a kite for days after my covid vaccines. Probably 4 or 5 days. That's not normal. Then I gradually go downhill assuming I don't crash over 2 weeks. By that point I get the distinct sense lots of things have reactivated and...

@Ariel Thanks for that link. I was really struggling to find the data, even for healthy people, but that data for pwme is fairly easy to follow. Seems to suggest it doesn't matter waht you get, whereas for cort's poll Moderna and Pfizer did do better than AZ in terms of recovery times. I am...

@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...

Due to get my Pfizer booster early December. Really hoping for a less rough ride than the last two. Not sure I could deal with another 3 month relapse.

I love how the symptoms sound horrendous like a call sheet for any major virus and yet they use tiredness to describe pem and general state of function in the same page. The mind boggles. Seriously though I think it's lack of education they haven't got a clue. I'm lucky to have such an...

What worries me is that when a new variant comes along. We would need a new vaccine dose for that to cover it. The damage that ends up happening to us is severe. Although I find it interesting that many with ME had no reaction or it was incredibly mild. Yet about a quarter had much worse...

True I was sleepy for about 6 to 8 hours, then once I woke up the next day the hyper activity began. I wouldn't say I felt great, more like I felt wired really. That was jab 2. Jab 1 however, I had really bad viral symptoms for about 8 hours, literally the works. God only knows what it was...

Great thread this is. Had been wondering how people were getting on. Out of interest is anyone high as a kite for about 7 days after they get their covid vaccine? I remained pretty hyper active for the first 7 to 10 days and then both times crashed with minimal exertion (I just don't even go...

@Mij interesting. Thanks for the link. There's certainly lots of things it could mimic. Personally though based on several other experiments I've done my dry mouth only seems to come on with anything that's immune modulating or it happens a few days into a cold or the third instance is it comes...

@Trish I guess there's a possibility it's pathogenic (pathogen causes the symptoms) and there's also a possibility based on studies that it could be microbiome adjustment (more natural anti biotics are produced in the gut making the host feel unwell). Here's what I found earlier re...

Forgot to add. When I'm in this state it doesn't matter how much water I drink. It makes no difference. Until the immune activation passes. 6 months ago it wouldn't pass and I'd spend 2 or 3 weeks with a dry mouth and this caused dental and mouth wound healing issues.

I've noticed I only get dry mouth which lasts all day and all night if my immune system is activated and I don't mean because of a cold. My immune system used to activate every 2 weeks for about 3 weeks at a time. Whilst this 3 week period ensued my mouth would be incredibly dry and I'd feel...

Well 2.5 weeks out from the flu jab and while my symptoms seem to be very under control I've lost a lot of stamina and strength physically and my envelope is much much lower than it was before. But I am not as bad as many though which is a blessing. Even so I'd still love to understand why...

In terms of the booster. A friend with FM who had it a very long time ago and reached 6 months last week was unable to book it and GP was unable to book it or help out with it. So it would seem you can't get a booster even if you want one and are eligible. More stories about this in the guardian...

Hi all, The day before my first vaccine az1 I was in clear remission in so many ways after some successful experiences with a protocol I am still on and was on then. It was night and day really. I went from feeling ...yes feeling healthy and feeling normal I mean emotionally and mentally...

My brain fogs got worse the last 6 months. I have periods where it's ok but I'm struggling. I work full time and find it really quite hard understanding keeping up with and visualising what people are telling me. I feel like I'm wading through glue. I don't actually think I've ever had brain fog...

Has anyone ever done a study like this into hormone tests for the same number of ME patients and controls I wonder? Looking at thyroid hormones as well as sex hormones and gdh/ifg-1?

Yes wasn't great for me. Maybe Valcyte would be different RE Lerner's oft recognised issue with some patients not doing well on Valtrex - but the cost of that is astronomical.