Coronavirus and M.E./CFS
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Your vaccine experiences

This page was most recently updated at 11am on Monday 8 February 2021.

People with M.E. have been getting in touch to tell us about their experiences of having the Covid-19 vaccine. With their permission, we are sharing these stories here to help others understand what is involved in the process. Please be aware that the accounts below are anecdotal and do not constitute scientific evidence about the impact of the vaccine.

Anne, 67, Cumbria

I had the Pfizer covid19 vaccine last week. I want to report that I had no side effects other than a slightly sore arm. My M.E., which I have had for over 30 years, resulted in me having to take ill health retirement when I was only 44 years old, and I still have to use a wheelchair to go more than a hundred yards or so outside my home. My experience of the vaccination has been positive, so I wanted to share this.

A, 42, Newcastle upon Tyne

My level of M.E. fluctuates from normal functioning to completely bedridden. Recently I have been feeling very ‘M.E.’ for about 6 months. But still getting on with day-to-day life.

I had the Oxford Astrazeneca vaccine, via the NHS Trust I work for.

I was seated for the pre-vaccine questionnaire, for the actual vaccine itself and monitored for 20 minutes after to ensure no anaphylaxis. Again this was seated. Past ‘live’ vaccines have been 100% relapse inducing for me. So far I have felt an increase in my symptoms but no where near enough to class as relapse. I'm currently three-days post vaccine and starting to see improvement.

M.E. Friends Online forum user, 78, Cheshire

I would say I have moderate M.E. My husband, who has terminal lung cancer, and I had to travel six miles to the vaccination centre which isn't far but took a little organising as we don't have a car.

Once there, we were lucky in that we'd hit a quiet time and there was no queuing. If we'd had to queue, that would have been more of a problem for me than for my husband.

The whole procedure was carried out smoothly and efficiently with plenty of guidance where to go, the floor was marked for distancing. We booked in and were given a card to hand to the person giving the vaccination. Then a few questions were asked, including if I had any problems with adrenaline which I can have but he didn't seem to think it was a problem. We were told we'd had the Oxford Astrazeneca vaccine so didn't need to wait.

I did feel nauseous on the way home but put it down to M.E. travelling problems – I haven't been out for months! The night following we both had some back pain and the following day I felt off balance and nauseous and the neuralgia I suffer from was very bad. Again, could have been down to the vaccine or M.E. The neuralgia and nausea has simmered down and I've been much better since. My balance is always poor. I honestly don't know whether the vaccination was the cause or the car journey or both. It's always difficult to say with M.E., isn't it?

Anonymous, 76, Gloucestershire

I am 99% bedbound. I had the Oxford Astrazeneca vaccine. I did have a reaction to the Smallpox vaccine many years ago, with blistering at the vaccination site and around my mouth.

For this vaccine, my GP came to me. I opened the window, we both wore masks. I was able to talk it through with a nurse practitioner on the phone prior to deciding to have the vaccine. I just sat up in bed, no pain whatsoever from the jab. It’s the nearest anyone has been to me in nearly a year!

Bearing in mind that most reactions come the day after or the next day. Less than 24 hours in, I had a headache and my O2 levels were lower than usual. Two days later: nasty nightmares both nights since the vaccination, though that could have been all the nasty M.E. stuff going on! Very tired, more than usual.