Has anyone with ME/Chronic fatigue/Post viral fatigue had a vaccine?

[anomletteandaglassofwine]

I've had ME since having glandular fever in my teens. It was pretty dreadful until my mid 20s, I was under multiple consultants for various symptoms and at one time I was on so many medications that I needed a chart to keep track.

Thankfully it has got a lot better since then, but even now in my late 40s I am still living with it. I manage fairly well with pacing myself and being very careful about my diet, but it still really affects my quality of life.

I have been particularly careful for the last year as long Covid sounds very similar my experience and I don't have any desire to go through that again. I have been waiting for a vaccine (I'm not in the UK so still waiting for my age group to be eligible), but while I'm nervous of long Covid, I'm also worried about the effects of the vaccine in relation to ME. So many unknowns.

I'm wondering if any other ME sufferers have had the vaccine and how did you get on?

My 19 year old son has had the vaccine 1st and 2nd jab he has ME, anorexia and coeliac disease and has been fine with no flare ups

So I had post viral fatigue ironically following covid (I guess long covid). My first jab was fine but my second jab did flare my symptoms, which was fucking irritating as I was only feeling better from the original bloody covid. I feel okay though now, I still think I'm sub par but irs difficult to know whats vaccine whats covid and whats just getting older and I can live with it

I have Fibromyalgia with quite severe chronic fatigue, I’ve had both doses of Astrazenica. I had side effects after the first dose quite badly for 24 hours and wasn’t great the second day either, then back to “normal”. Second dose only slight side effects for the first night.

I slept and slept for 24 hours a few days after both my Pfizer jabs and had a very tender arm both times but then totally normal again .

I had 48hrs of feeling like my ME had been turned up to maximum intensity after the first AZ and a less clear low grade fatigue for about 10 days after the second. Have a friend with similar severity to me who has been a bit worse for the few weeks since her first but as she said if that's what the jab does, it's got to be a whole lot better than getting Covid. I work for the health service so didn't really have a choice but I think she's right, out of the two, I'd choose the vaccine reaction.

If you follow @Tanya_Marlow on twitter she's assembled what anecdotally seems to be happening in the ME community.

My 21 yo daughter has had both doses , she has fairly bad CFS , she was in group 6 for coeliac disease . The first dose made her feel pretty rough for a couple of weeks but the second has been fine ,she’s her usual very limited self .

I asked similar (fibromyalgia and CFS / ME) a few weeks ago on here and the consensus was that it wasn’t too bad - there were a few flares but most were ok.

I had Pfizer today and crashed out for several hours, very painful swollen arm. But nothing awful.

I've had my first Pfizer, I'm chronically ill with cfs and had no impact or flare at all after the 1st jab...apart from the after effects of poor sleep due to pain of injection site.Am prepared for potentially some side effects after second. I havent heard of any significant problems in the wider ME/Cfs community but I was glad to get pfizer rather than AZ as have had a lot of friends who are in good health who have had a rough few days after AZ first dose.i think most cfs people would be best to clear a few days aside in case of side effects but better this than the side effects of actual covid.

Thanks everyone for your replies, sorry to hear so many of you, or your loved ones, are suffering from this incredibly frustrating condition.

Very interesting to hear your experiences. I was offered the Jannsen (not in the UK) but I declined and I'm waiting for the Pfizer. I decided against the J for a few reasons, not so much because of the risk of blood clots, but more because the side effects seem to be more severe with it and the AZ, and I worry it might trigger off a flare up of ME. Also the efficacy of the Jannsen, a one shot, is very low in comparison with the Pfizer. I feel if I'm going to take the risk of being ill it needs to be worth my while IYKWIM.

I had my second Astrazenica yesterday and to be honest it's put me in a huge fibro flare. It's awful yes but it's temporary and just reminds me how much worse it would be if I actually had covid.

I had the Moderna a week ago and other than a sore arm so far so good. Was really worried as I was housebound for a year at one point.

Yes my Mother had ME onset about 20 years ago. She was quite ill at the time for about 4- 5 years. She has had the Pfizer jab and is convinced some of her symptoms have returned. She had the second jab about 5 weeks ago, and feels it was related to the second dose

I have had CFS for 20 years. After the first vaccine I had a bad migraine the next day, after the second one, I was exhausted and spent a day in bed. I also had a very sore arm both times.

I was pleasantly surprised by how mild the side effects were.

I had post viral fatigue last year after possibly Covid but never confirmed. I've been struggling since my first AZ dose to be honest; about 8 weeks ago. Again, no idea if connected or coincidence.

I was diagnosed with M.E. following what was believed glandular fever but was found to be Epstein barr virus later on, into my teens. So similar to you, mine was a problem until about 19/20 years old and now in early 30s and just manage the aches, pains and fatigue as I go.

I've had both astrazeneca doses. First one took me a couple of weeks to get over as I felt really rub down and tired after. But I was still able to crack on as normal so wasn't too bad. I had my second a week ago and have had no problems x

I've had both my jabs (AZ), got a bit of a sore arm and loss of appetite for a day after the first, hardly anything after the second. My healthy DH had worse side effects than I did (he took a day off with fatigue and fever).

Friend with CFS has had both Pfizer jabs with no more ill effects than the rest of us in terms of feeling mildly crappy the following couple of days.

dh has chronic fatigue. Was poorly for 24 hours then fine (well didn't cure his tiredness but not more tired than usual)

Yes I've got ME/CFS and fibromyalgia had my second jab on Wednesday and aside from a very achey arm I've thankfully felt no bad effects

I have fibromyalgia and had first does of Phizer last Thursday. Had a slight sore arm, but no way as bad as what I was expecting, and about 24 hours after I was exhausted and had to go to bed. However I slept well (a miracle in itself!) and have been fine since.

I have been ill since I had my first vaccine (AZ) worsening ME/CFS and auto-immune new issues. I am pretty certain they are related... but on balance believe it was still the right thing to do to have the vaccine (any vaccine!).

Still undecided whether I should have my second. Am making very, very slow progress and really don't want to risk being bedbound again. It has been pretty miserable.

However... very glad to hear that so many others have not had experience and I seem to be in the minority.