Flu shots for ME/CFS people

[starlily88]

I have thankfully only got the flu one time about 5 years ago. Horrible disease.
Question - does anyone with ME/CFS get flu shots?

I am afraid to get one due to our compromised systems, and also the shot is effective in 29% of people. News says to get one by end of October.

Wondering how many of you get the flu shot? Have you gotten side effects? Has it stopped the flu.
Just need advice on how important the flu shot is, I generally stay away from dr's office late in winter to avoid people.
Starlily88

 

[Rufous McKinney]

I generally stay away from dr's office late in winter to avoid people.

Thats my method. I dont get their shots. If others want to, fine.

 

[Rebeccare]

I've gotten the flu shot every year. Since I've gotten sick I've occasionally had mild allergic reactions (hives--the allergist says they're nothing to worry about), and I always feel a little under the weather for a few days after as my immune system revs up. But other than that I've had no ill effects.

This year's flu shot isn't a great match, but if you get the flu shot and then get sick it's more likely that your illness will be less severe.

My opinion is that, in general, the flu poses a much larger risk to people with ME/CFS than the flu shot, especially if you've not had a bad reaction to a vaccine before.

 

[southwestforests]

I don't know when the last time I got a flu shot was, if ever.
And even when I worked retail from early 1980s to 2007 I didn't end up with anything identifiable as the flu.
Had plenty of trouble with sinus infections, ear infections, ulcerative colitis, but that was my normal.
Still haven't ended up with anything identifiable as the flu.
Some years back my doctor at the time suggested that with my iffy health and with my Dad and his sister's often oddball reactions to medications and vaccinations perhaps I might wish to not risk the flu shot.
Since that went with my existing gut feeling I accepted that advisory.
I've not broadcast that on Tumblr, the only social media I do, since the disability community I have encountered there is, at least the loudest among them are, of the mind that everyone who doesn't get the flu shot should be executed for murder.

 

[Jyoti]

I was thinking about posing this very question @starlily88. One doctor --my GP--suggests it. I think it was simply standard advice. Another, who is also an MD but with a functional practice and a holistic outlook, strongly urged me NOT to get it. I have never gotten a flu shot, but I have had the flu--prior to M/CFS--and it is an awful illness. However, worse than my PEM? Is it worth it to have the reaction that RebeccaRe has? I am confused and interested in any other perspectives or advice!

 

[Rebeccare]

Is it worth it to have the reaction that RebeccaRe has?

The way I see it, I always feel under the weather, so feeling a little worse for a few days isn't that big a deal!

I got the flu followed by pneumonia the first year I was sick with ME/CFS (I didn't have the flu shot that year, and was living in a dormitory with several hundred other students, so that was a recipe for disaster). It was a miserable experience that took a while to recover from.

Just from doing a quick google search I found a few resources that may be helpful to others who are struggling with this question:
• Entry on Influenza Vaccine in the ME-Pedia
• Leaflet on the flu vaccine from the UK ME Association
• Blog post about the flu shot from a ME/CFS patient who is also a pharmacist

 

[leela]

I'm on the same page as southwestforest and rufous.

The two times I got flu shots--back in the nineties, pre-M.E., when a nurse wearing a clown suit?? came to my work place and dosed us all up--
I promptly got a large hard sore spot at the injection site, then my whole arm went heavy and unuseable, then I got the flu for two horrible weeks, which resolved briefly and then came back again for more weeks.

Never again, especially with immunocompromise. But that's my choice and I don't push it on others, nor do I appreciate the zealots imagining I am the devil's minion for making that choice.

The fact that most of us never leave our house makes a point for both not being a threat to the "hive immunity" theory, and for the very reduced odds that we'll even contract it in the first place.

 

[Jyoti]

Thanks @RebeccaRe --helpful links leading to slightly more informed contemplations. I really appreciate the facts. I also have considered @leela 's point about the lesser likelihood of both being exposed and exposing others due to our, shall we say...'lifestyle?' Mine certainly does not lend itself to a lot of in-person interaction of exchange.

 

[starlily88]

Just from doing a quick google search I found a few resources that may be helpful to others who are struggling with this question:
• Entry on Influenza Vaccine in the ME-Pedia

RebeccaRe - thanks so much.
I liked the ME-Pedia article the best, has CFS dr says not to get whole shot - he has seen his patients get sick for one month from full dose.

I have been fighting constant sore throat, sinus pain/pressure, constant nasal drip for most of this year - I think it is my allergies (which used to come only in spring, then fall). Now with ME, any changes in temps - I get severe allergy. It feels like my esophagus or throat on fire all the time. ENT told me to do Endoscopy. Starlily88

 

[starlily88]

Never again, especially with immunocompromise. But that's my choice and I don't push it on others, nor do I appreciate the zealots imagining I am the devil's minion for making that choice.

Leela agree totally. My girlfriend got flu shot (she is not sick at all) - had the worst flu so never again

 

[Jani]

Be aware that a visit to a doctor is already a strong infection risk for flu-like diseases.

Well-child visits linked to more than 700,000 subsequent flu-like illnesses
https://www.sciencedaily.com/releases/2014/02/140212144611.htm

 

[Blue Jay]

I've never had a flu jab but I wonder every year whether it's the right decision. There seem to be pros and cons to whichever. Not a very scientific answer but the best I can do. I have had two nasty doses of flu, both many years ago.

 

[Hufsamor]

Thanks for bringing it up!

My mother have post-polio, which is said to be the one disease closest to me.
Before she started with flue shots she got the flue almost every year.
And even though she didn't get it very hard, she would never get rid of it.
She was always sick more or less two or three months each year.
Now, with the flue shots, she doesn't even get an ordinary cold, and haven't for years.

But she doesn't react badly to any medicine as far as we know.
And she has never had any bad reaction to vaccination.

After I got ME, I never got really sick from cold or flue.
Lots of allergies but hardly anything else.
When my ME increased heavily I suddenly had less allergy but now I get colds that won't leave for a couple of months. So I'm really counting on my fingers as well...I'll follow my mother to the doctor anyway, when she gets her shot. So if I'm otherwise healthy that day I might get one myself.

 

[Moof]

I've had the jab every year since I caught 'flu (I honestly thought I'd had it prior to that, but as soon as I got the real McCoy, I realised they were just bad colds). I was very ill for five months, and it took me well over a year to get back to my previous baseline. Other than a slightly bruised feeling in my arm the next day, I've never had any noticeable response to the vaccine in more than 15 years.

My GP also asked me to have the pneumococcal jab last year. That did make my immune system flare up a bit, but it was nothing major. I'd have no concerns about a repeat dose if it were recommended, though I would make sure I didn't need to go out for two or three days.

The problem with the 'flu vaccine is that it's different every year, and no-one with ME can predict how they'll respond. I find it quite hard to imagine it could be worse than getting the virus, though – which is why I still have it, even though I'm no longer exposed to dozens of people's germs going round and round at work!

 

[leela]

I find it quite hard to imagine it could be worse than getting the virus, though

(I'm not arguing with your choice here, just offering my personal vantage)
One reason I am fearful of the flu jab is due to the adjuvants. They are toxins designed to aggravate the immune system. With MCAS, I don't trust my body to be able to effectively detoxify from/easily manage heavy metals, fetal tissue, albumin, formaldehyde etc, even in small amounts.

Interestingly (since this is rather a controversial topic in regular medical world) on a recent and rare visit to a conventional allergist, when I told him my adverse reactions details for the flu jab, he wrote in the notes "severe". I was honestly expecting an argument, bc I always assumed "severe" meant like life-threatening anaphylaxis. I was impressed that he respected the severity of my response and my choice not to partake.

 

[ljimbo423]

I feel that it's a personal decision, based on many things. I don't get one because I haven't had a cold or a flu in years, so it's not necessary. My immune system is already high or over-active, so I never get colds or flus.

If I did get flus fairly regularly or very bad, even just once a year, I would probably get a flu shot. I've never had a bad reaction to one either. So I know that wouldn't be a problem.

Just like clothes, one size doesn't fit all.

 

[Rebeccare]

It is important to note that you can't actually get the flu from the flu vaccine because it contains inactive virus--this is a common myth. This myth has come about because lots of people do feel ill as their bodies mount an immune response, but they do not have an active influenza infection. And some people do happen to get colds or the flu just before or just after getting the shot, but that's unrelated.

There are certainly legitimate reasons for certain people not to get the flu shot, but fear of getting the flu from the shot shouldn't be one of them.

 

[Mary]

I don't get a flu shot. Years ago I asked my then ME/CFS doctor whether I should get one. I told him I hadn't had one for many years so he said don't start now. Unfortunately he died several years so I can't ask him his reasoning.

I do use andrographis whenever I get sick, it's great stuff, and I often combine it with echinacea. The last time I had the flu was in 1999-2000, I did get very sick for about 3 weeks, I'd been sick with ME/CFS for a little over a year then, but haven't had it since. Though I do get sick a lot with sinus issues but andrographis and echinacea help with that.

 

[Rufous McKinney]

I ALWAYS recommend the chinese Don't Get Sick pills, or Get Over That Faster pills...they are outstanding.

They are rather inexpensive and one should simply: have them there on the shelf. Deploy at first sign or hint that something might be up.

 

[Mary]

I ALWAYS recommend the chinese Don't Get Sick pills, or Get Over That Faster pills...they are outstanding.

Could you be a little more specific? e.g., I used to take yin chiao, it was pretty effective for colds etc but haven't taken it for years. But I don't think that's what you're referring to here --