Vaccination for someone with M.E. or Chronic Fatigue Syndrome

[thinkingaboutLangCleg]

I have a friend with chronic M.E. who refuses to get vaccinated against Covid in case the vaccination makes the M.E. worse. (I know Chronic Fatigue Syndrome is a silly name for M.E. because it’s about much more than fatigue.)

This sounds like antivax rumour, and I can’t imagine the vaccine would do more harm than getting Covid. Any advice, anyone, please?

I’ve been vaccinated and had no issues at all apart from a mildly aching arm for a few days after the second one. I felt no better or worse than I usually do. That said, I’m moreorless symptom free from this wretched illness (which in case she questions whether I actually suffered from it was diagnosed after I was referred to a specialist NHS Chronic Fatigue centre that just happened to be based at a hospital fairly local to me).

My own view for what it’s worth is that your friend is barking up the wrong tree - if my experience is anything to go on the effects of having the vaccinations will be far less than if she ends up catching COVID. Although it was never proven I’ve always felt that my chronic fatigue began after I had a nasty infection, so I try and do whatever I can to prevent me catching anymore.

Can't help sorry, the person I know with ME is desperate to get vaccinated and can't understand why they aren't classed as vulnerable, since their immune system is compromised. They'll be hitting the booking website this morning trying to get an appointment.

I have been vaccinated, I am actually standing outside Boots waiting for it to open for my second jab

The ME Association website has some advice. It is generally thought to be OK but individuals will have their own issues.

Ask her if she has read their website of Facebook page. She might get more specific information there.

I have ME and have had my first. I did feel pretty awful for about 48 hours afterwards but otherwise business as usual.

This might be useful for her: www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/.

I agree that Covid itself could make her CFS worse, long term fatigue seems a big problem after Covid.
Does she have a consultant or a good GP who could advise her on the possible impact of different types of vaccine ? Does she have a flu vaccine and if so does that make her symptoms worse ?

As CVS seems to be post viral in many cases, then getting vaccinated seems better than risking Covid.

There's a good FB group for people with CFS/ME to share their vaccine experiences. From what I've read there, they vary enormously from not much in the way of a reaction, all the way through to a complete set back in progress. Your friend is right to be wary and should read widely before coming to a decision, but at the end of the day, there's no way to know for certain how any of the vaccines might affect her.

www.facebook.com/groups/226441995768222

I have ME and I was on a clinical trial for novavax. After 2nd vaccine I felt really unwell and then had fatigue for about 3 weeks. All ok now though. All I can say if the side effects I had are anything like a bad doss of covid I am very glad to be vaccinated. I felt so rough for 60 hours, not felt that ill in years and as covid can last quite a while I really don't want that!

I have ME I had the jab had to fight for it as not offered it in group 6. Given how any illness makes me worse for months I was very keen to have it. Had a temperature for a day but didn’t feel ill. Guess that’s just how I normally feel.

Wasn’t just the risk of covid for me. I generally feel very unwell all
Of the time, the thought of being made worse for weeks months with covid and breathing issues would have broken any slack I have to cope with any more issues!

The medical community don't really know what CFS/ME is or what causes it, so it's not so much a distinct illness as a description of a group of common symptoms, the main one being post-exertional malaise, and reactions to vaccinations can vary from person to person. So it's impossible to say how your friend might react to a vaccine. She might be fine, she might be a bit more ill than the average person but then be fine or she might suffer a relapse that takes months or years to recover from. As such it really is down to her and her knowledge of her own particular illness and what makes her worse as to whether she wants to risk the vaccine or keep shielding until enough of the population have been vaccinated to stop the virus circulating. Most reports I've seen from people with the illness who have been vaccinated so far, however, have described having quite bad side effects but only temporarily with no long-term impact on their condition. So my advice would be to encourage your friend to read about others' experiences and to seriously consider getting the vaccination but to respect her decision if she decides not to, as it's not anti-vax sentiment, but a genuinely difficult choice for someone with a debilitating and little understood illness.

DD has CFS, her paediatrician has said that there is no evidence either way, but it's probably wise to get the jab as having CFS in the first place means her body has had a bad reaction to a virus and she would possibly be at risk from long covid.
I've had a bad reaction to the virus and I'm not convinced having it was the best idea, so that cours my opinion. But DS is an older teen so the decision is hers, she just doesn't want AZ, which is the one I had.

*That should say I've had a bad reaction to the vaccine so that colours my opinion.

I've had ME for 15 years, I had my second vaccination a few weeks ago. I felt awful for a couple of days after the first and exhausted for a few days after the second.
I don't really understand your friends reasoning, getting covid would be a million times worse, why take the risk?

I would imagine she is just wary of becoming more ill than she is now. It's hard to say how she will react to the vaccine, I have ME and had quite a bad reaction. But that could be more as I have lots of allergies / small vessel disease rather than the ME. It didn't make my breathing issues any worse but 5 weeks on I'm still sweating every day, getting more blood spots under the skin, itchy and flu like and before vaccine I only had itchy out of those symptoms though weirdly my breathing has improved.

As for is it worse / better than covid who knows, its the most ill I have felt since covid started but I may well not have had covid. Also depends how much she goes out - if she is largely housebound she may think risk of catching covid is low. I think its up to her at the end of the day. She may also be scared if she gets ill there won't be any help as ME is quite like that. Trouble is ME is just a lumped together category of people with similar symptoms.

I will be waiting to see more data from those who have chosen to be vaccinated before coming to a decision. For now, it’s a no. I am mostly at home, so my risk is low, and I’ll be continuing to take precautions to avoid catching illnesses (which I did long before covid anyway).

Dd (19) with ME is fully vaccinated with oxford vaccine before they stopped giving it to younger people. She was quite unwell for a few days after first one and very tired for a week or two but back to normal now.

I have ME. Double vaccinated, no issue xx

I have M.E and I’m only 23 so I can’t get it yet. I’ve been really disappointed that I’m not eligible for it yet, it was an unknown virus that got me sick in the first place. I will be running to my jab as soon as I can get it. Glad you asked though it’s nice to see that others have been okay with their jabs!

My mum has fibro with chronic fatigue and her vaccines had no impact at all.

The ME society had a letter that I used listing why people with ME should have been invited in group 6 given many are very unwell and any illness likely make them much iller for longer. And knock on effects on relapse or work and Health. Worth a look unless you think it’s going be few weeks and might as well wait. I was amazed it worked for me never been given any special care even when bedridden.

My daughter has quite severe CFS and she has had both doses as she was group 6 for another condition . She was a bit unwell with the first dose , nothing with the second and it definitely hasn’t made her any worse than she was before . From our POV it was a choice between what would be worse her having an issue with the vaccine or actually getting covid .

Dd (19) has ME, she had the vaccination about 2/3 weeks ago and i dont think she had any issues

Just the first dose though

Oops

We think she had covid at the start of lockdown which did hit her for 6

I’ve just got home and read a pageful of helpful answers to my question! Thanks, everyone. I will look up the resources and sites you’ve mentioned, and print this all out for my friend. I can understand why she’s cautious, but the advice here seems more sound than the antivax stuff she’s been reading.