Whether to have a flu vaccination

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Not quite sure where to ask this question: is an influenza vaccine safe for someone with ME? someone who has never had one?

I am not ill, but had my first flu shot this past fall and will have another one. But a family member with ME is asking to be put on the list for a shot too. Is it safe for folks with ME?

 

I don’t think there is a straight forward answer to this. Some people report no problems and others report significant problems. We might have done a poll on this here, but I could be making it up.

The British ME Association have a quite good information sheet on whether to have the flue vaccine.

I personally have a negative reaction, losing about three weeks after the injection. When I still worked, in health settings, I used to have the jab despite this, because my potential risk of getting flue was consequently quite high, but also I was working with people who were vulnerable in relation to flue causing significant health problems. As my health has deteriorated I am largely housebound so it is no problem avoiding anyone who might have a cold or flue so I no longer have a flue jab. Also as I live alone I don’t have to worry now about giving flue to anyone who might have other health issues.

There is no way of finding out who will have a negative reaction to a flue jab and who will not, other than having the vaccination. But even if someone has a negative reaction against this needs to be balanced how likely they are likely to get flue if they do not have a jab, and what their reaction might be to getting flue and whether there are any implications for other people.

[added - this is probably something best decided in consultation with the person’s physician]

 

Dear Peter, I genuinely appreciate your response. Do you know what the negative reaction might entail? As for physicians, well, here in Canada, the GPs do not have a clue about this illness and many think the person is just 'tired' and should 'move about' more. So, I have no one to ask here. But I would like to know what sorts of reactions are possible. Once again, thank you for writing.

 

Here is a link to a thread discussing the flue vaccine here at S4ME https://www.s4me.info/threads/the-flu-jab-saves-lives.5747/#post-103894 , which discusses a number of the issues.

My personal experience when I did have the vaccine was a negative reaction not unlike flue itself, and also similar to PEM (post exertional malaise) with the exacerbation of all or most of my then ME symptoms. I used to have the jab when my ME varied between mild and moderate, and it would result in having to spend a lot more time lying down. These effects would last for between two and three weeks. Having said that, a lot of people experience no negative reaction at all.

A difficulty in answering your question is that like most things relating to ME there enormous variation between patients and potentially within individuals over time. I don’t know if this relates to the vaccine issue, but there is also the discussion that some people might have an impaired immune system whilst others might have an over active one. Some people with ME feel they get every bug going, while others feel they rarely catch bugs. Subjectively I have had periods in the nearly thirty years of my ME when I get every bug going, whereas now I very rarely get anything, however I can not be certain that this latter is immune related or just down to the fact that I live a pretty isolated life.

 

@Perrier ive had a very negative reaction to the flu vaccine since I became ill with ME. The first time, I went out a few days after the vaccine in the wheelchair to the shop around the corner from me, I subsequently became very unwell & deteriorated and didn’t recover from that back to where I was before the flu jab. at the time, the reaction to my outing was far worse than what it had been prior to the flu jab. The second flu jab - ended up even worse with a deterioration lasting months after the jab, including increased pain. I’ve also had my arm swelling up a lot at the site, extreme pain at the site and a full body rash and severe itching for a few days after the injection.

It is now on my medical notes that I have had adverse reactions to the flu jab, and the nurse has advised me not to get it anymore, especially as I’ll be at home & not seeing anyone. She’s advised my mum and partner to get the jab & that my partner is not to see me when he is ill.

I have had flu jabs before ME and have not had this reaction.

For me, a combination of the flu jabs, caused extra deterioration, on top of the graded exercise therapy I did at the beginning of my illness. In hindsight I wish I hadn’t had them as I can track my deteriorations each time I had them. However, I do also know people with ME who get them who have not had any reaction whatsoever to them. It’s again one of those things that I wish would be researched thoroughly.

 

"Flu Vaccine Increases Coronavirus Risk 36% Says Military Study"

"Titled, Influenza vaccination and respiratory virus interference among Department of Defense personnel during the 2017–2018 influenza season, the report on the study addresses the phenomena of vaccine virus interference of the influenza vaccine."

https://www.disabledveterans.org/2020/03/11/flu-vaccine-increases-coronavirus-risk/

Influenza Vaccination and Respiratory Virus Interference Among Department of Defense Personnel During the 2017-2018 Influenza Season
https://pubmed.ncbi.nlm.nih.gov/31607599/
"Receiving influenza vaccination may increase the risk of other respiratory viruses, a phenomenon known as virus interference."

 

I'm not exposed to many people so don't feel the need to get a flu shot. I come down with some weird virus every every year or two. I feel as though my immune system is constantly fighting something. It's exhausting.

 

Dear Lunarainbows,
Lovely name that! Thank you for your response. Goodness, that sounds rather unpleasant, to say the least. I really don't know what to do.
I will keep reading. What a horror this ME is. When will there be something concrete for all the patients!

 

Dear Annamaria, Thank you for these links. It is so hard to know which bit of information to follow. Thanks again.

 

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https://meassociation.org.uk/2020/1...neumonia-vaccines-2020-2021-and-website-poll/

 

Coincidentally, I'm going to get the flu vaccine at the local pharmacy this evening.

I started to get annual flu shots after I came down with what was probably the "Swine Flu" (H1N1/09) in June 2010. In the US, the epidemic lasted from the spring of 2009 to August 2010, so I was "lucky" enough to get it at the tail end of the epidemic. It was a very strong case of the flu, but I seemed to get over it in about a week or so. However, for a couple of weeks afterward, I was coughing up thin, clear fluid in very significant amounts. This may have been something called "bronchorrhea," though I'm not sure if flu (or even "swine flu") is known to trigger that.

Anyway, this convinced me to start getting an annual flu shot. Since then, I've never had a bad reaction to flu shot, other than maybe some prolonged swelling at the injection site. I also had a DPT (diphtheria / pertussis / tetanus) shot later in 2010 without any consequence save for a very sore shoulder muscle at the injection site that lasted quite a long time.

However, I only started to get flu shots after my ME symptoms had already improved quite a bit years earlier. All I can say is that my vaccinations of recent years did not cause my ME symptoms to get any worse. Whether this would be true for someone on the more severe side of the scale, I can't say.

 

I never got a flu vaccine before. However, this time I put undecided as apparently 'the vax folks' are looking at doing flu/covid combination - https://www.cnn.com/world/live-news...s-01-17-22/h_eb90664bc5937c3701705da93dbca507

In this case, as for now, I put undecided. I still have one more surgery, and I have no issues getting another booster if need be. However, if this flu/covid combo vaccine comes out before, I will take that instead...see how I do with it, and if I do ok, I may keep with it as a regular vaccine.