Should people with ME/CFS have a Covid-19 vaccination?

March 4, 2021


Neil Riley, Chairman, ME Association

Should people with ME/CFS have the Covid vaccination? That's a hard but not impossible question to answer.

You would not want to get Covid. It's a terrible disease. You don't want to make your ME/CFS worse. No one does. And getting the Covid infection on top, would make life even more difficult. So, as with much in life, it's a choice.

In the end it comes down to risk. When you weigh up ‘having the jab or not”, there can only be one rational choice. You must choose the vaccine.


Risk is all about having ‘no guarantees'. Your reaction to the vaccine might be fine and surely it is better to be protected as much as is possible from infection.

The feedback we get is that most people with ME/CFS experience no reaction to the vaccines while some might suffer the short-term side-effects – sore arm, headaches, and chills. A small number of people experience setbacks of a longer duration and a flare in ME/CFS symptoms.

The vaccine may set you back several weeks but most people seem to be okay and nobody seems to have regretted their decision to have it.

Download our free leaflet

ME Association Template Letter to help you obtain priority vaccination against the Covid-19 infection.

I’ve had ME/CFS for 34 years and am moderately (as opposed to mild or severely) affected. I faced the same predicament as everyone else has.

After weighing up the risks, I listened most of all to my daughter. She has nursed Covid patients in hospital. She told me that it was such a horrendous illness that there was no debate, “You must go for a vaccination”. So, I did.

I was fearful of a complete relapse, but it did not happen. At the ME Association we hear various tales of how people have got on.

But each of us is wonderfully different and that goes for how our immune systems react. Most of the population have had few major reactions. Often the jab might cause an aching arm and short-term headache.

Making an “informed choice” is hard. We simply don’t have the research to support people with ME/CFS and the various Covid vaccines and it may be that we never will.

You must take the plunge, and, despite my own experiences post-vaccination, I still believe it to be a plunge worth taking because the alternative doesn’t bear thinking about…

THE JAB DIARY – NEIL RILEY

Day 1 – Saturday 6th February 2021
4.30pm. it said, ‘Be there. Your jab awaits.’ Hmm… I’ve debated long and hard over whether to be vaccinated against Covid.
With moderate, as opposed to mild or severe ME, I’m worried. Will I have a bad relapse for weeks, months? But I keep hearing my daughter, a nurse in Cornwall, “Believe me, I’ve seen it, you don’t want Covid.”
So here I am, at the surgery. Sleeve up, ready for the needle. “That’s it”, the Doctor says, “All done.”
So that’s the first good news, the small pin prick hardly registers. Oh, and I came away with a lovely little card saying I’ve had a dose of Astra-Zeneca. How thoughtful these GPs are!

Day 2 – Sunday 7th February 8, 2021
A poor night’s sleep. Woke up at 3.00am and unable to rest. Even a ginger biscuit with a cup of tea, which is a failsafe, doesn’t send me off.
Up at 7.00am and feeling drowsy, as though I have a cold. But no painful or heavy arm. It’s a struggle to keep going through the day, so lie down and listen to my audio book, which sends me off to sleep nicely.
Mary, my wife, is my ‘control’. She had the jab at the same time, so we swop symptoms. “Tired”? “Yes” Headache? “No” Feels like a cold? “I guess so”.
Sleep comes easily. Even dozed off when watching football on TV. Mary always takes that as a serious sign I am unwell but no, just a tiredness. No brain fog or ME fatigue.

Day 3 – Monday 8th February 8, 2021
Woke up and feel no different from pre-jab days. All seems to be going well. No exacerbation of ME/CFS symptoms. Fingers tightly crossed that this is how it will continue.
Mind you, my immune system is a bit duff. I reckon it wouldn’t recognize a protein spike if it met one. It’s probably wondering what all the fuss is about. Long may it do so.
Things have changed in hours. Woke at midnight with a sore and heavy ‘jabbed' arm. Then sharp headache pain and coughing.
Looks as though my immune system, whose Sat-Nav is usually on the blink, has met up with the vaccine. A midnight tryst is usually romantic but instead of a warm embrace I reach for the paracetamol.
By morning, in full ‘doze' mode. ME/CFS symptoms a little worse but nothing that a cold wouldn't cause. Confidence rising that my fears for the vaccination are overdone.
Hear that Charles (Shepherd) who beat me to a jab by 3 minutes last Saturday, had his ‘reaction' to it within the first 24 hours. Mine took about 56. Goes to show immune responses can differ.
Very tired. Time to climb those stairs to bed. Now that will be tough.

Day 4 – Tuesday 9th February 2021
Overall things going well. No exacerbations of ME/CFS symptoms in the last 24 hours. Just feels like a ‘thick’ cold (which is a form of coronavirus) that you’d manage by doing a bit less, resting more and taking care.

Day 5 – Wednesday 10th February 2021
Continuing cold symptoms. Estimate 25% down on energy but that’s nothing out of the ordinary for this fluctuating illness. Fingers tightly crossed that all is going well. Really pleased so far.

Day 6 and 7 – Thursday/Friday 11th/12th February 2021
In writing this diary, I need to make it clear that this is my own experience of how the vaccination has affected my moderate (home-bound 95% of the time) ME/CFS.
The last two days have seen my ME/CFS symptoms worsen. Energy levels down 50% (and they were not high before the jab). I tire very easily.
I am experiencing notable headache, enlarged neck glands, numbness, and brain fog. More hours spent lying on my bed in a darkened room, resting.
Hoping things will start to improve soon.

Day 8 – Saturday 13th February 2021
Still feel full of a cold but head is a little clearer and not so fatigued.

Days 9 and 10 – Sunday/Monday 14th/15th February 2021
Neck glands up again and very fatigued. Brain does not want to work; noise sensitivity high; hot, red feet yet cold hands. Feeling rubbish.

Days 11 and 12 – Tuesday/Wednesday 16th/17th February 2021
Still headaches persist. Balance not easy and body feels shaky. Cramp like feeling in legs, very taught muscles. Having to rest far more than usual.
Easily tired and brain wants to shut down. Tinnitus loud.

Days 13 – 20 – Thursday 18th to Wednesday 24th February 2021
I still have swollen neck glands. Occasional sharp headaches. Resting much more than before the jab.
Reckon that my usual 50% of normal health is down to 35%. That’s a slight improvement over the past week, so I’m hoping that it is the start of a steady recovery.
But with ME/CFS, well, you never can predict the next day.

Days 21 – 23 – Thursday 25th to Saturday 27th February 2021
Feeling stronger and neck glands are down. Doing a bit more about the house and can do more work for the ME Association. Things are looking up. On Friday, I went for a short walk and did some small jobs in the house.

Day 22 – Sunday 28th February 2021
Bang! Suddenly this morning my legs went like jelly; losing balance; brain fog is back. “And so, to bed.” ME/CFS is back with a jolt. Must have done too much, too soon.

Day 23 – Monday 1st March 2021
Fatigued; slow brained; typing on keyboard is rubbish and keep having to correct spelling. That’s always a sign that brain and fingers are not saying hello to one another.
Ah well. Do another few emails for the ME Association and then back to lie on my bed and listen to my Audible books in a darkened room…

13th March 2021
It's now 5 weeks since my vaccine jab and I reckon during the last few days I'm back to my pre-jab health. That's really good news for me. I hope that it gives those who were fearful of what might happen to their ME/CFS a bit of re-assurance. Nothing of course can be guaranteed as we are all different in our immune makeup. But still, my fears of a long and prolonged relapse have not materialised.

A huge thankyou to Astra Zeneca and the NHS for all you have done.

Neil

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