Covid Vaccinations and ME/CFS: Community Feedback!

February 12, 2021


Russell Fleming, Content Manager, ME Association

Contents

1. Summary of Covid vaccination feedback.

2. MEA Trustees describe their vaccine experiences.

3. Feedback from people re: ME/CFS priority vaccination.

1. Summary of Covid vaccination feedback.

We have been receiving a steady flow of feedback from people with ME/CFS who have had the first vaccine. Although in total the number of comments is around 100 so still relatively small.

Mainly these come from people who work in the NHS or social care and other frontline services and others with ME/CFS who are in the over 70 age group.

But we have also received comments from people who have other underlying health conditions – and these are growing as more people receive the vaccine in Group 6.

Most report no negative reactions or have experienced some or all of the short-term vaccine side-effects – soreness at the injection site, muscle aches, fatigue, headache and feeling feverish or flu-like – for a few days.

The Covid Vaccine Priority Letter Template (V3)

Others are, not surprisingly, reporting a temporary exacerbation of some of their ME/CFS symptoms. 

While a few are reporting a more significant and/or persisting exacerbation. 

There are no reports so far of any serious adverse effects.

Most people have had to travel to have a vaccination and this could also account for an increase in symptoms especially if they have been housebound by ME/CFS during the pandemic and are not used to the sudden increase in activity.

NB:  If you are having side effects from your vaccination, then please rest as much as possible and take paracetamol if you need to use a painkiller.

We are beginning to hear from a number of people who have managed to convince their GP or vaccine centre that ME/CFS qualifies them for priority treatment in Group 6.

And, we have heard from a small number that didn’t have to negotiate to get the vaccine. We even heard from one person with severe ME/CFS who received the vaccine as a priority in his own home!

“Please pass on my thanks to Dr Shepherd. My GP was perfectly happy to add me to Group 6 after I wrote to him.”

“I emailed your information about Covid-19 vaccine priority to my Drs surgery, and I've received a reply saying I will be put in Group 6!

“The email reply said ‘chronic neurological conditions’, which ME is classified as within the guidance of the document you sent.

“Thank you for the links and information, and well done to Dr Shepherd for his campaigning.”

“Today I got put down for Group 6 after I emailed them the ME Association Vaccine Leaflet, with a quote from Dr Charles Shepherd regarding the ‘Green Book’ wording.

“My GP surgery is now updating all other registered patients of the surgery who are diagnosed with ME/CFS. I had to fight for it taking two days of email exchange, but it was worth it!”

“Very positive news for me re: priority vaccination. My GP confirmed I am in Group 6 with no quibbling! However, I would like to say thank you to Dr Shepard for doing the letter which I had ready to send in case I had any problems. I find him and this whole page very supportive.”

SELECTED COMMENTS RECEIVED VIA EMAIL AND FACEBOOK

Joint Committee on Vaccination and Immunisation

We don’t expect the chief medical officer for England or the JCVI will make a clear ruling about the inclusion of ME/CFS as a neurological condition that warrants priority treatment with the Covid vaccine.

The reply we received from the JCVI directed us to the wording in the ‘Green Book’ which says that GPs should (not can) apply their clinical judgement when it comes to patients who have underlying health conditions that are likely to be exacerbated by Covid infection – see blog published earlier this week.

As ME/CFS is very likely to be exacerbated by the infection, this means that doctors cannot simply state that they are unable to place someone with ME/CFS into Group 6 because the JCVI does not allow them to do so.

GPs should be applying their clinical judgement in this situation and taking your own circumstances into account.

While we consider if it is worth raising the issue as a parliamentary question, we think it is still worth sending the proforma letter to your GPs surgery or vaccine centre – if your GP is unable to make a decision.

This is particularly important if you are someone who is severely or very severely affected by ME/CFS and/or housebound and who hasn’t been able to leave home during the pandemic.

It may be that you can benefit from having a vaccination delivered at home – although these instances are very rare based on the limited feedback we have received.

If you are (or the person you care for is) severely or very severely affected by ME/CFS then you have a much stronger case for priority vaccination, so please use the proforma letter to contact your GP and make the request.

2. MEA Trustees describe their vaccine experiences.

We thought you might like to hear how three of our trustees got on when they had their vaccinations.

Neil, Charles, and Ewan, all have ME/CFS, but the vaccine was delivered based on their age and not because of the underlying health condition:

Neil Riley (Dorking, Surrey)

The Jab-Diary!

Day 1- Saturday 6th February 2021

NEIL RILEY CHAIRMAN

4-30pm, The letter said, “Be there. Your jab awaits.” Mmm… I’ve debated long and hard over whether to be vaccinated against Covid. With moderate, as opposed to mild or severe ME, I’m really worried.

Will I have a bad relapse for weeks, months? But I keep hearing the words from 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 Doc. says, “finished”. 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, fails this time to 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 symptoms. Fingers tightly crossed that this is how it will continue.

THE MEA TEMPLATE LETTER FOR YOU TO AMEND AND SEND TO YOUR GP (V2)

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 symptoms a little worse but nothing that a cold wouldn't cause. Confidence rising that my fears for the vaccine were 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 symptoms in the last 24 hours. Just feels like a ‘thick’ cold (which a Coronavirus is) that you’d do a bit less, rest and take 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 & 7 – Thursday and Friday 10-11th 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%) ME/CFS.

The last two days have seen my ME symptoms worsen. Energy levels down 50%. (and they were not high before the jab). I tire very easily.

Headaches, enlarged glands in my neck, numbness, brain fog have all upped their act. More hours spent lying on my bed in a darkened room, resting. Hoping things will start to improve soon.

Dr Charles Shepherd (Stroud, Gloucestershire)

Mini vaccine diary

Saturday 6th February 2021

DR CHARLES SHEPHERD

By strange coincidence I was vaccinated at almost the same time on Saturday afternoon as Neil!

My vaccine journey started earlier in the week with a paper letter inviting me to a mass vaccination centre some distance away at Bath Race Course or an appointment at a GP hub surgery in Stroud on Sunday morning – I chose the latter.

A few hours later the Stroud appointment was cancelled by text message due to logistical problems!

My own GP surgery was extremely helpful, and I was soon able to book in on Saturday afternoon in Stroud instead.

Saturday in Stroud on a freezing cold afternoon…

The whole process went like clockwork from arrival in the surgery car park. Queued outside for about 10 minutes and spent 5 minutes inside.

The (Oxford/AstraZeneca) jab was virtually painless – given by a local GP. The NHS at its very best! Left chocolates for the volunteers…

No immediate side effects – apart from feeling a bit more sleepy than usual in the evening.

Went to bed early.

Sunday 7th February 2021

I had the longest solid sleep for ages. Did not wake up till 9am! Feeling just a bit virally and achy this morning.  So will take things easy today – as I’ve been advising our members to do…

Took a couple of paracetamol and had a very easy day. Almost back to normal by Sunday evening.

Monday 8th February 2021

Still a bit more viral than usual but otherwise OK.

Tuesday 9th February 2021

Tuesday – back to normal self…!

Ewan Dale (Glasgow)

Thursday 4th February 2021

I got my invite letter yesterday, with the time of early afternoon today (I phoned to check). Got down to the SECC/Louisa Jordan hospital about 15 minutes before and started queuing.

EWAN DALE

Lots of staff checking why you were there and directing you on to the next corner/possible diversion of attention.

Once in Hall 4, we were directed to join 2 queues on either side of the aisle between empty treatment cubicles. That progressed the length of the (biggest) hall, then we turned into the next row, and came all the way back.

Eventually the queues were distributed into 2 aisles of occupied treatment booths for half the hall length. A few checks – had I had Covid, felt ill (I presumed the answer was no), was I on warfarin or similar – a minor prick, and I was directed to go and sit in the next half of the aisle for 15 minutes ‘in case'.

I felt a minor stiffness in both left (stuck) arm & back of neck, but that passed, I now have a minor ache in the upper (stuck) arm. I got the Pfizer, so may get called back within a month.

Over half of us old folk were trying to distance, but only a minority of medical staff (and a few ‘stewards') were bothering to distance properly, though they were masked and hand-gelling regularly.

3. Feedback from people re: ME/CFS priority vaccination.

Positive experiences

Severe ME – Vaccinated at home (Cornwall)

“Just a very brief email to let you know that as a long-term M.E sufferer, housebound for nigh on 29 years and classed as ‘severe'. I contacted my local GP surgery a week ago to let them know that I was still housebound, and existing on my own and that due to my illness and to shielding I had not seen a soul since Feb 12th, 2020!

“I reminded them that M.E was indeed classed as a neurological illness (W.H.O ICD 10 G93.3) and that neurological illnesses had been moved to ‘priority' status by the chief medical officer.

“I asked if it would be possible to have the Covid-19 vaccine within my home, as I was shielding and because my illness had kept me housebound and single for many years and not well enough to drive. I also mentioned that I was reluctant to use a taxi because of the risk of exposure.

“Yesterday afternoon I was very pleasantly surprised to have a member of my local surgery knock at my door announcing that they had come to give me my Covid 19 jab.

“No appointment had been made but this was not a problem at all. I donned my facemask and gloves and opened a window and left the front door wide open so that a good draught would freshen the air in my cottage.

“I was told that they would return in 12 weeks’ time to give me the second jab and that this second jab might be a different make of vaccine to the one I was being inoculated with today.

“It was a painless procedure, and my first face to face interaction with another human being for 361 days! It was also the first vaccination since I got ill with the virus that gave me M.E in the summer of '86.”

“I hope other sufferers of M.E will be prioritised locally in my area of Cornwall.

“My thanks and best wishes to you and the ME Association for your on-going and hugely appreciated efforts on my and other ME-sufferer’s behalf’s.”

MEA Twitter:

MEA Facebook:

“I’ve been called for a vaccination and a friend who also has ME has been called too. We’re not in the over 70’s age group that are being vaccinated at the moment. We’re in different parts of the country so not just a local decision. Possibly good news for ME community? Thought I’d let you know as the ME Association have been fighting for this to happen.”

“In our area they’re doing over 70’s (which I’m not – I’m 66) & vulnerable people & it would seem that my GP has included me. My friend with ME in the Bristol area ( similar age mid-sixties )also had hers yesterday but she is housebound . I’ll try to find out why I was included if I can & let you know. Thought the ME association would be interested to know if some GPs’ are including ME sufferers. My age group is group 5 . Happy to get the vaccine though.”

Negative experiences

“Thanks so much for all you're doing for the ME community. With regards to the vaccine, I sent my GP all the information that you wrote in your JCVI letter (this was before you posted your template but the same basic info).

“The Covid administrator there told me that he consulted lots of different Drs in the practice. In the end I was refused – they said that Group 6 is for people whose medical conditions mean they are more likely to end up in hospital if they catch Covid and they said with CFS (they didn't call it ME) it would be manageable at home. I haven't heard that explanation for Group 6 before, do you think it's correct?

“It's obviously a lottery for whether your GP has empathy for ME or not, and it's so upsetting to realise the lack of it at mine when it affects my and my family's life so much!”

“Further to your update re the Covid vaccine, when I spoke to my GP on this matter they said that they do not have the facility to add people to the lists, that it is done centrally, and not the remit of the GP. Please can you advise? There are so many mixed messages out there!”

“My doctor just told me I can’t have the vaccine because of when I was diagnosed with M.E. which was 2004. I don’t see what difference this makes?? I am heartbroken!”

“Just got the following from my GP: “We are unfortunately not able to move an individual up to group 6 for chronic fatigue syndrome/ME. We may receive further guidance that changes this, though this is not something we are able to do at this time.” Pretty much what I expected from them!”

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