Covid-19 & ME/CFS: Not everyone tolerated the first Covid vaccine

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Below, we feature four stories from people who developed medium-term health issues following their first Covid-19 vaccination.

“I’ve recovered from the vaccination. It’s been two and a half months. Not nice but Covid would be worse…”

Neil Riley, Chairman, ME Association.

Pauline, Annette, and Neil (MEA Chairman) have ME/CFS, but Caroline (MEA Magazine Editor) does not and yet she still experienced a bad reaction. But whereas Caroline did recover relatively quickly, the three with ME/CFS took longer or have still not recovered.

First we hear from Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, on the current situation:

At the moment there is no evidence to indicate that any of the vaccines (i.e., AstraZeneca, Moderna, Pfizer) currently available in the UK is a better choice for people with ME/CFS in relation to either safety or efficacy. It is highly unlikely that you will be offered a choice of vaccine that is just based on the fact that you have ME/CFS.

Uncertainty remains as to how much protection any individual will have and how long this immunity will last. What seems likely is that all those over 50, and those in vulnerable clinical groups (i.e., JCVI group 4 and possibly group 6), will now be offered a booster dose in September or October, possibly combined with the annual flu vaccine that is due at the same time.

Extensive feedback to the ME Association indicates that most people are coping with the Covid0-19 vaccines and most are experiencing nothing more than a short-lived period of the common side-effects that are known to occur with most other vaccines.

However, a small but significant minority, possibly around 10%, are experiencing a more significant relapse or exacerbation of their ME/CFS symptoms or are having more pronounced vaccine-related side-effects. This is clearly a very worrying situation for people in this group, especially when it comes to deciding on whether or not to have the second dose if you have still not fully recovered. 

We don’t know if these more severe or prolonged reactions are the result of any particular vaccine or indeed if anyone with ME/CFS is at any greater risk. It would seem from the feedback we have received, that they are not. Even people who are severely affected by ME/CFS are not all reporting bad reactions. It really does seem to be based on the individual.

We also don’t know the extent to which an exacerbation of ME/CFS symptoms, or indeed a relapse, is the result of a bad reaction to a vaccine, or because of, perhaps, post-exertional malaise. Many people who are normally housebound are, for example, having to travel to get their vaccine, and this as well as other factors might contribute to a deterioration.

Medicines and Healthcare products Regulatory Agency (MHRA)

If you do experience a reaction to a vaccine that is more severe, is unusual, or persists for longer than a week, you should contact your GP.

You should also consider reporting the reaction to the MHRA using the Yellow Card system.

The Second Dose

We currently have very little feedback from people with ME/CFS who have had a second dose of either the AstraZeneca or Pfizer vaccines. 

Having the second dose should obviously provide a further boost to immune system protection against the virus and possibly lengthen the time this protection lasts.  But this may be at the expense of having another exacerbation of symptoms.

If you have already had a bad reaction this is clearly a difficult decision to make and will depend on all of your individual circumstances.

Amongst the healthy population, side-effects can be more common and pronounced after a second dose because the immune system has been primed by the first dose to react against anything that it recognises as a potential Covid-19 infection – i.e., a second dose of vaccine.

Update 14 May 2021

There is now emerging evidence from the MHRA in the UK and the CDC in the USA to indicate that side effects are less frequent and milder following the second dose of the Oxford AstaZenca vaccine and more frequent after the second dose of the Pfizer vaccine:

At the moment we don’t have enough information from people with ME/CFS who have had a second dose to say that this also the normal situation with ME/CFS, but there will always be individual variation.

On a personal basis I had no side-effects at all following my second dose of the AstraZeneca vaccine and saw someone this week who had developed a nasty and widespread allergic skin rash following the second dose of the Pfizer vaccine.

Feedback

Have you experienced a severe reaction (lasting longer than a week) to the first or second dose of the Covid-19 vaccines? Has it affected your decision about having the second dose?

If so, then please join the discussion on MEA social media.

Or you can share your story with us: Feedback@meassociation.org.uk Title your email: Covid Vaccine Feedback.

We might not be able to reply to all the emails we receive, but we do promise to read each and every one.

Free information:

Stories

Below, we feature four stories from people who developed medium-term health issues following their first Covid-19 vaccination.

Pauline, Annette, and Neil (MEA Chairman) have ME/CFS, but Caroline (MEA Magazine Editor)does not and yet she still experienced a bad reaction. But whereas Caroline did recover relatively quickly, the three with ME/CFS did not.

Pauline (ME/CFS relapsed after first vaccine)

I have had ME for 21 years and gradually improved over that time to be roughly 50/60% of where I was before the symptoms developed. I had Oxford Vaccine on 17th February and within two hours began to feel very unwell and had to go to bed.  

The next three days were very bad, with dizziness, disorientation, extreme fatigue, very cold with uncontrolled shaking interspersed with uncontrollable sweating. nausea, severe migraine type headache, severe joint pain, aching all over even to my fingertips, face and jaw pain, confusion/brain fog, unable to sleep, unable to eat, upset stomach.

I consulted GP who told me to take paracetamol, and rest. This I did, eventually after about 4/5 days the symptoms gradually abated.  However, I have now been left with severe ME symptoms again, with extreme fatigue, muscle and joint pain, confusion and brain fog, uncontrollable sweats, periods of extreme cold and shaking, aching/burning in legs etc and can do hardly anything, even trying to get a meal can cause me to “hit the wall” with fatigue so bad I am unable to function. 

I have gone back to how I was 20 years ago. I can barely function.  I have spoken to two other GPs and 111 as well as various ME support groups, including yourselves. I have been told by GP not to have second vaccine, but no-one can tell me if/when I will improve.

I cannot believe that after 21 years the only advice I have been given is to rest and pace – it seems nothing has changed. I am so angry and depressed. Has anyone else reported severe worsening of ME ongoing after 6+ weeks?

Update 20.04.21: No change I’m afraid and having spoken to various clinicians, I have been advised not to have 2nd vaccine. It’s too much of a risk. I do hope Neil is improving.

Annette (ME/CFS relapsed after first vaccine)

I am writing to ask if you could please take up the plight for people with ME who are developing long and severe reactions to the vaccines.

I am writing this in bed and on day 19 of my own nightmare of a bad reaction to the AstraZeneca jab. I’m not anti-vaccine.

If there is a subset of people with ME with these long and severe adverse reactions it would be great to know how many, if it is related more often to one vaccine, what alternatives we have and what to do about it.

In addition, it may pay to know that the local GP system has broken down in some areas. I am in Buckinghamshire and my GP clinic has broken.

It has installed a “front end” on the appointments system making it impossible to book online any longer, telephone calls are taking up to an hour to be answered, staff on the phone say they are untrained (without me asking them anything).

Call backs are taking 72 hours if at all, the Practise Manager won’t take or return calls and a nurse triage system has been put in place to deal with all vaccine adverse reactions and is untrained to cope or understand. There are no home visits or physical examinations.

From reading other’s experiences it sounds as if this may not be only in my area. I was sent away from my local hospital A&E on my first attempt as my GP should be dealing with this. They refused to let me see a doctor.

I am finding few resources online for PWME with adverse reactions. Your own Poll seems to be one of the few. Thank you. We can see from these polls that a small minority are affected. I’m surprised I reacted so badly. I did everything I could “right” before and after my vaccine.

Now we know there is a small minority can you please help. Not for me but as a way of addressing that this is occurring and possibly finding a solution or help for those who will come after me.

Neil Riley (Chairman, ME Association, ME/CFS relapsed after first vaccine)

Neil has provided a diary of his experiences; these were recent updates:

1st – 4th March  
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 MEA and then back to lie on my bed and listen to my Audible books. Getting over this Jab is harder than I thought. I need to rest more and pace better. 

5th March -17th April     
Still very tired. Pain over the brain, not the usual type of headache. Have about half of pre-vaccine energy. Brain fog; unable to concentrate for long. Cold hands and feet. Full of usual cold/flu type symptoms; coughs, sneezing, runny nose. I suspect it may not be wise to have the 2nd jab at the moment feeling like this.

18th April

At last, I have stopped shivering and my brain is clearer. I’ve recovered from the vaccination. It’s been two and a half months. Not nice but Covid would be worse. Oh heck, GP has just phoned to ask if I am able to come in for my 2nd jab. I think I shall have to bite the bullet but it’s no fun having ME/CFS in a time of Covid especially when Mary, my wife, has had her 2nd dose and is as right as rain. Lucky duck!

Caroline Cavey
MEA Magazine Editor. Healthy, but bad reaction to first vaccine)

I have always been a great believer in vaccinating against killer diseases. I was vaccinated as a child (TB, Polio, etc) and all my children had the MMR vaccine, along with any others that were deemed necessary along the way.

We were all vaccinated against Yellow Fever, and Malaria for holidays and did so without a second thought. So, unsurprisingly, I was very keen to get my Covid-19 vaccination. After a fairly depressing year it seemed to me that the only way the world could become safe again was to ensure that the majority of the population be vaccinated against this truly terrible virus. 

Caroline Cavey, Editor, ME Essential

My medical background is mixed. I describe myself as a healthy person. I’ve had some serious health issues along the way, but I recover and get on with it. I do not have ME/CFS, but as a teenager I contracted Glandular Fever and was pretty unwell for some time. I went back to school assuming I was better, but within days was unable to get out of bed and ended up having six months off school. My GP described it as Post Viral Fatigue. Since then, if I am ever unwell (anything from a common cold to major surgery) there is the possibility that I will ‘crash and burn’, more so as I get older, so I do look after myself.

I was beside myself with excitement when I was invited to have my first Covid-19 vaccination. I realise this sounds excessive, but it is truly how I felt. I knew that I might have some post-vaccination symptoms, perhaps a bit of a headache or feel tired, an aching arm or even a bit of nausea. But nothing prepared me for what was to come.

I had my first vaccination in the early evening of 11th March. My husband drove me the 40 minutes to the vaccination centre just in case I felt wobbly afterwards (I really don’t like needles!) The system was so organised, there was no queue and I was in front of the nurse before I knew what was happening. I wriggled my arm out of my jumper and happily offered it up to Astra Zeneca – and I never felt a thing! Off home we went and I was elated. I felt very slightly nauseous a couple of hours later, but nothing that a diet coke (my cure-all!) couldn’t sort out. The feeling went away almost as quickly as it came on. 

The next morning, I got up as normal and went about my day – getting the usual daily household chores done early, then making myself a coffee and settling at my desk for a day of work. One cup of coffee later I was feeling quite tired, which was odd. My slump, and its resulting chocolate fix, generally comes at around 4pm, not 10.30 in the morning. Knowing that a bit of tiredness might be a side effect from the vaccine and with nothing too urgent in my workload, I decided to be kind to myself and I took the rest of the day off. Within half an hour I was asleep on the sofa and didn’t wake until my husband came home around 4.30pm. 

I say again, I am a healthy person. However, the following days continued in the same manner, unfortunately with increasing exhaustion. The nausea became overwhelming, I couldn’t think straight, I couldn’t face food and there was no way I could even consider going for a walk. Hell, I could barely crawl up the stairs. Instead, I lay on the sofa, alternately sleeping and crying for no reason. I didn’t have a headache as such, but my head felt muzzy, full of cotton wool.

My husband cooked dinner for two weeks straight and I pushed it around the plate before going straight to bed. At night I spent hours awake/asleep/awake/asleep, then couldn’t drag my body off the bed in the mornings, the result being that I was spending more than 12 hours a night lying there feeling like I’d been weighted down. Work took a back seat.

Yes, I did work and I worked every day, but I could only manage about an hour before having to rest. So only the most urgent and important things got done – one hour on, an hour or two off, probably working for a total of 2-3 hours a day at most. My daughter took on some of my workload to help me out – fortunately, she has followed me into the same career.

My vaccination reaction was far, far worse than I could ever have imagined. For over two weeks I could barely function and, although I did get work done, I felt as if I were doing everything in my sleep. Gradually I started to pick up and feel more like myself, but the first time I realised I’d had a ‘normal’ day was more than a month later.

My second vaccine is due at the end of May. Am I going to have it? Absolutely! I do hope the reaction next time isn’t so severe, but I’ll be ready for it and I’ll plan for it, just in case. The experience was awful, but nothing will deter me from doing it all again.

More information

Russell Fleming, Content Manager, ME Association

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