Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

[HowToEscape?]

N of 1:

My doc advised against the flu shot because of mecfs.
I asked for it anyways, got it.

So far I've had it most years since being sick. Most of the time, no reaction. Once, I was zonked for a few days.
One of the 2 years I recall not getting it, I was knocked down by either a flu or some seasonal bug which dragged on for over a month, and was hit by something else later in the same season. I remember wishing I'd gotten the shot.

The experience of this disease changes over time within the same person. Initially, I seemed to not catch the usual bugs, later I would be knocked out by any hint of cold/flu etc. . The worst reaction to a flu shot I've had was a few day's worth, and that on only one occasion. Usually, nothing.

I never tested for whether the bug I caught in the no-vax year was a flu or a cold, I can say that I've had only one reaction to the flu shot and a mild one at that. You may have different results, possibly very different. Myself, I'm going to get it done asap, as it takes a few weeks to reach whatever effectiveness it has.

 

[Tammy]

In general, I understand the concept of vaccination and can see the potential merits. However, I wonder about the safety of some of the adjuvents used. How can one be sure that foreign substances added to vaccines to increase the body's immune response, and that the body may not be able to clear, are safe for everyone?

That's exactly why I will not EVER get another vaccination. When I really started researching the making of vaccines.........and all the adjuvents used............ it was downright scary.

 

[Daffodil]

it is less likely for us to get the flu anyway cuz we have high cytokines and such

 

[charles shepherd]

it is less likely for us to get the flu anyway cuz we have high cytokines and such

I don't think there is any sound research evidence to indicate that people who have autoimmune and inflammatory conditions, where there may be increased or fluctuating levels of some pro-inflammatory cytokines, are less likely to pick up viral infections such as flu

And we know from patient evidence that people with ME/CFS do catch flu - and may then have a significant relapse of their ME/CFS as a result

But I am happy to be corrected if anyone can find such evidence

CS

 

[Daffodil]

I don't think there is any sound research evidence to indicate that people who have autoimmune and inflammatory conditions, where there may be increased or fluctuating levels of some pro-inflammatory cytokines, are less likely to pick up viral infections such as flu

And we know from patient evidence that people with ME/CFS do catch flu - and may then have a significant relapse of their ME/CFS as a result

But I am happy to be corrected if anyone can find such evidence

CS

my only evidence is that the world's most knowledgeable doctor about CFS, told me this.

 

[Wonko]

it is less likely for us to get the flu anyway cuz we have high cytokines and such

My understanding is this only applies during some phases of the illness, and it's counterbalanced, at least in my case, by a significantly increased propensity(edit - susceptibility) to things like food poisoning.

 

[charles shepherd]

my only evidence is that the world's most knowledgeable doctor about CFS, told me this.

In other words, an opinion based on his/her judgement of the scientific evidence

But not evidence based on hard scientific fact!

CS

PS Who is the 'world's most knowledgeable doctor about CFS' ?

 

[heapsreal]

PS Who is the 'world's most knowledgeable doctor about CFS' ?

Wessely hahaha

 

[Snow Leopard]

What happened to this herd immunity they keep talking about.

We're far below the numbers required to achieve herd immunity* and the vaccine has been particularly ineffective this season presumably due to seasonal viral mutation.

http://www.abc.net.au/news/health/2017-09-28/flu-epidemic-your-questions-answered/8992884

*and the reservoir of flu is other species so it can never be eradicated like human only viruses.

 

[Wonko]

*and the reservoir of flu is other species so it can never be eradicated like human only viruses.

To be fair we are, as a species, working hard to address that problem, with at least 200 other species going extinct every year. It seems an awful lot of work to me when the problem could be solved by eradicating just one.

 

[Snow Leopard]

To be fair we are, as a species, working hard to address that problem, with at least 200 other species going extinct every year. It seems an awful lot of work to me when the problem could be solved by eradicating just one.

Birds, horses, pigs etc. I don't think that's going to happen!

 

[Wonko]

Birds, horses, pigs etc. I don't think that's going to happen!

I meant humans, eradicate humans and then it's unlikely that any humans will get seasonal flu.

Seems a small price to pay

 

[Daffodil]

dr. kenny demeirleir

but it may be in certain phases of the illness like someone said up there, i dont know

 

[charles shepherd]

dr. kenny demeirleir

but it may be in certain phases of the illness like someone said up there, i dont know

I am not a member of the KDM fan club

From the discussion taking place elsewhere on PR:

https://translate.google.fr/transla...e-meirleir/?sh=14738900706eca5f05dcf-40021154

CS

 

[HowToEscape?]

That's exactly why I will not EVER get another vaccination. When I really started researching the making of vaccines.........and all the adjuvents used............ it was downright scary.

If by research you mean google, then I wouldn't let that stuff worry you. People doing real medicine have little time to play around on the Internet, people doing scaremongering gossiping and selling snake oil have all day, it's a core part of their job.
The scaremongering crowd works on their pitch with much effort being made to sound scientific and authoritative. They are in the biz of sales and attention seeking.

There are actually legitimate reasons for people with our disease not to get vaccines, my M.D. who is in no way alternative, recommends against them for me, because I have an immune disorder as do most of us posting here. The reasons for his recommending again them for my case have absolutely nothing in common with the anti-vaccine themes frequently seen on the net.

TL-DR
If you have ME/CFS, there is reason to decline the flu shot and avoid travel which requires new vaccinations. You might benefit, but many have a crash.
For everyone else, common vaccines provide about the best benefit to risk ratio of any medicine ever invented. That fact makes people who peddle fake news & medicine very angry.

 

[HowToEscape?]

My understanding is this only applies during some phases of the illness, and it's counterbalanced, at least in my case, by a significantly increased propensity(edit - susceptibility) to things like food poisoning.

Yes, and it's also hard to tell with only yourself as a reference.
In the first few years of CFS I stopped getting common colds. I was also not going to work every day, though I think I had enough exposure to the public (I live in a large, filthy city) that I would've caught anything going around.
Later I seemed to catch stuff, and after being hit for over a month by what should've been a 72 hour virus, I made sure to get the flu shot every year. With it, I didn't catch flu outbreaks that made news headlines, and there's a high school across the street. Of course it does nothing for common colds, and perhaps I might not have caught the flu anyways. YMMV.

 

[Misfit Toy]

I forgot this...my immunologist (a top one) wanted me to get the flu shot but then gave me a script for Tamiflu in case I got the flu afterwards.....?????????

Needless to say...NOPE. Didn't get it. Or, the flu!

 

[Jennifer J]

My understanding from what I researched other years about getting a flu shot, is the flu shot covers three main strains of flu they ?calculated (not sure if that's the right word) would go around that coming season. It doesn't cover all strains that could be going around.

Also, the flu shot is only a percentage effective, I believe around 50 - 60 %, and that varies too according to our age, immune system and other factors.

So you can still get a flu after getting a flu shot. The flu shot decreases the odds of getting certain strains of flu and could help the immune system in protecting or lessening other ones.

I hesitate each year to get one. (Our immune system with this illness changes. I don't want to make myself worst.)

Haven't been able to make it in to get one in the past few years. I go to a kid's clinic and get the shot without thimerosal (mercury). This can be requested elsewhere too.

I do want to get the flu shot this year, if I can get there. I'm more susceptible to the flu, pneumonia, and complications, can't do antibiotics and most meds, nor can afford to be knocked down anymore than I am now with my health and energy (being worst from the flu can affect me for months). I had a flu shot 3 years ago and was fine. Fingers crossed this will continue to be the case.

 

[RuthT]

I don't think there is any sound research evidence to indicate that people who have autoimmune and inflammatory conditions, where there may be increased or fluctuating levels of some pro-inflammatory cytokines, are less likely to pick up viral infections such as flu

And we know from patient evidence that people with ME/CFS do catch flu - and may then have a significant relapse of their ME/CFS as a result

But I am happy to be corrected if anyone can find such evidence

CS

I’ve just had the flu jab: waited for a good day & had it in the morning as there is some research (heard on the radio, sorry no citation) suggested the immune response was stronger then (and I am generally better in the am than pm). Have had one each year since 1990s).

The reasons why:

I have had (so far) no bad response to the jab; when I get any virus it triggers a set back, few symptoms but mainly deep fatigue with hints of eg cough, congestion;

I just had a summer virus lasting 7 weeks which has triggered a significant set back in progress I had made (I wish there was something for these because I am always terribly floored by them: onset of MECFS in Aug 1990, trigger for major relapse July 2015), got better then picked up a cold. I don’t want another major viral setback;

In 2015 when I was diagnosed again, the consultant I saw suggested getting the flu jab, as although there may be a reaction, flu itself could be very damaging;

My husband is very involved in the local community and has a robust immune system: he picks up loads of colds, viruses etc, and gets a bit tired for two days but can keep going. However meanwhile passes them on to me, so is likely to pick up any flu viruses going round and bring them home.

That’s the balance of risk/benefit that I have made in coming to my own decision.

 

[Skycloud]

I have had the flu shot in past years, some times I didn't get it. I have always seemed to be fairly ok with it in the past, with a minor effect on my ME. I have asthma, so that has been a big consideration for me, I also still have a child in school, with asthma, and other family members whose jobs involve meeting the public everyday.

I don't want to have it, but having weighed things up I probably will go and get it, with my child who is at school. I always find this a hard decision and don't seem able to settle for a permanent position on this.

I've always found advice from my GP surgery a bit useless on it as I like to some facts. The MEA information is just the kind of thing I need.