Whether to have a flu vaccination

https://www.theguardian.com/comment...b-free-vaccination-nhs?CMP=Share_iOSApp_Other

I am not advocating the flu jab by posting this. I personally have not had any further vaccinations since falling ill with ME.

Let’s have a poll...

 

I have never had flu jab ever, I'm 56 (ME for 28yrs). I became ill from a sudden viral onset with an additional 4 vaccines soon after onset.

 

The flu vaccine does indeed save lives. That has been known for at least two decades. Its also so cheap its almost the cheapest way to save lives. I do not get it because I am at lower risk, being mostly housebound, and concerned how it might impact ME. In a really bad year, with a bad flu strain, I might well get it just in case.

 

For a number of years I have regularly debated with my GP whether or not to have the flue jab.

Over the Millenium new year, I had a bad dose of flue, that triggered a major relapse in my ME that forced me to take ill health retirement. So I had the jab for a number of years, but for me it triggered a worsening of my symptoms for between two to four weeks. So for at least ten years I have declined my GP's offer of the jab. In that time I have had occassional viruses, though can not say with certainty if any were influenza or not. For me it seems that the flue vaccine 100% of the time makes me unwell but the chances of getting flue without the vaccine are considerably lower, may be 25% or lower, as I am generally able to discourage any one with flue visiting me.

I understand that many people with ME have no problems with the flue vaccine, so I guess this will continue to be an issue with no clear cut answers. Also made more confusing in the UK by the enormous variation as to whether people with ME are allowed to have the jab on the NHS.

 

Nor have I. I'm 65.

 

A vaccine triggered the end of my life 20 years ago, i’ve never had one since, of any variety. Yes, i’m paranoid

 

On flu vaccine - https://www.meassociation.org.uk/20...ut-the-2018-19-flu-vaccine-12-september-2018/

 

This is just my personal 2018 anecdote:

I got the flu vaccine this year (through a voluntary first responder organisation I am still a member of). Yes, as expected, I felt a bit knocked back for a couple of days after getting it. My father and in-laws got it routinely because of their age and GP assessed risk. My husband didn’t get around to getting the shot.

Husband is very fit and healthy and would be expected to be the least likely to come down with a cold etc normally.

We visited my in-laws and then went to start a campervan holiday.
A couple of days in: my husband, who had been feeling a bit like he might be getting a cold since shortly after leaving his parents’, came down with what we thought was a bad cold.
We ended up having to return to in-laws as the “bad cold”, despite rest and plenty of fluids, nutrition, clean air and bedding, developed into the flu: fever, sensitivity to light and sound, inability to think or cope, etc (on top of the standard fatigue, respiratory and absurdly runny nose symptoms). More than I could manage in a campervan. It knocked him out completely for a week (couldn’t even ask him more than a few yes/no questions) and then left him needing to rest most of the day for a month after that. He is probably coming right now, two months later.

Despite being constantly exposed to it, none of the rest of us caught the flu at all. It felt quite eery.

 

I can't take the risk with the flu shot. Never had one. It was a flu-like cold that caused my mild ME onset and a very nasty flu which sent me into an acute severe ME onset.

My mother had a bad reaction to the flu shot a few years ago. She was very ill with vertigo for six weeks. I was so worried that she had come down with ME. She was bedridden and I told her she had to stay there and rest and not overexert to give herself the best chance of clearing it completely. I was so relieved she picked up after six weeks, but she was left deaf in one ear.

My mother's experience makes me feel even more at risk of the flu shot. Maybe we have some gene that is susceptible to a serious side effect. I don't know.

I also know I am at great risk of complications getting the flu. I caught a flu last month and was so ill with it. The pain in my lungs has only just eased the last few days. I got the flu late July and deteriorated. Mum also got the same flu and had to be hospitalised. I couldn't rest properly and had to visit mum. I got sicker and sicker and then I got severe PEM on top. Relieved to be out the other side of it all and stronger again.

I appreciate those (well folk/sick) who take the vaccinations. I still get the tetanus shot and seem to be okay with that one, so far. But I just can't take the risk with the flu shot.

I read somewhere that some people get the flu/cold and have no symptoms but are infectious - so spreading it unaware. Sorry I can't remember where I read it and can't post a link. I don't know how true this is.

 

I do think that those who can get a flu shot without major negative consequences
and who are exposed to either
a large number of people
or to those with compromised immune systems

are doing a community-minded thing in getting the immunisation.

That’s why the first responders get the flu jab: to reduce the chances that they’ll unwittingly expose people who are already unwell to influenza.

 

Here's the thing - autoimmune disease and ME (which obviously has some autoimmune component) are triggered by immune activation. Vaccines work by triggering the immune system to produce antibodies against whatever the vaccine is for. So it makes sense that ME and autoimmune disease can be triggered by both. This doesn't mean that vaccines are evil poison - they're no more dangerous than catching a cold or another virus. Most of the time, the immune system works as it should, only a tiny minority of the time it sets into motion the immune system attacking the body's own cells.

So, once this immune trigger has been pulled, can it be pulled again to make us worse? When somebody has two autoimmune diseases, or an autoimmune disease and ME, were there two separate triggers or did the immune attack 'evolve' to target more types of cells? Obviously catching a virus makes a pwME worse, but is this due to us being less able to handle the toll illness takes or further autoimmune action being triggered?

Also, say a cure is found, or a pwME goes into spontaneous remission. Are we then just waiting for the next virus or vaccine to flip the switch back into illness? Could we be cured twice?

 

I think the recent trials showing that Rituximab didn’t work ruled out that ME has a significant autoimmune component?

That doesn’t rule out some kind of dysfunction of the immune system though (possibly as a downstream symptom) if I’m remembering it right.

I seem to get colds/skin infections that last a long time, but I’m not sure that is directly attributable to autoimmunity.

ETA: I used to get free flu jabs as a result of my misdiagnosis of asthma, but since I still got a lot of colds with it I stopped. the CFS clinic advised me not to have it, which I think is strange.

 

It's yet another of those aspects of having ME that's as clear as mud.

I will have it because I'm asthmatic. Having flu jabs used to worry me a lot, and I still have some concern but I have tolerated them fairly well so far when I've had jabs. To me flu plus asthma attack with my level of ME is more than I want to experience if I can help it. I rarely leave the house, but my healthy family do and have a lot of contact with other people so they could bring it home.

 

I am at fairly low risk of developing the flu. However some of my husband's work colleagues have kids and come into work spluttering and sneezing.

Catching the flu, although I may only have fairly minor symptoms for a few days, usually triggers an ME "crash" lasting a good couple of months.

I can't have the flu jab because of my history of allergies.

 

No, because I'm mostly housebound so at low risk, otherwise I probably would.

 

I remember from one discussion thread, it may have been on an ME Association Facebook post though I am not sure, there seemed to be two distinct groups of people, those that had adverse reactions to the flue vaccination and those that did not.

Interestingly there also seemed to be two groups of people in relation to susceptibility to viruses, those that felt they get every bug going the rounds and those that felt they had fewer colds or flues than before the onset of their ME.

(Personally for me there is not a clear cut pattern, as at times I feel that I get every bug going and then at other times I go for long periods without getting any specific infections, though often it is not possible to distinguish ME crashes from active viral infections. Further I can not rule out this variation relating to external factors like levels of contact with other people; when my ME is bad I inevitably see few people, but also discourage any one who is potentially infectious from visiting.)

It was discussed if some people had an overactive immune system and some had an impaired immune system. However I don't have enough knowledge to say whether this is theoretically possible or not. The thread raised the question of whether those that had fewer colds, etc coped better with vaccinations or not. The thread being a small self selected sample did not really come to any conclusion on this.

 

I have said this before elsewhere but it may be fair to say it again here. This is not actually the case in practice and it is not what one would expect in theory either, knowing what we do of how B cells work. The evidence for immune activation triggering autoimmunity is pretty much zero, with one or two quirky exceptions like procainamide induced antinuclear antibodies.

Nothing triggers the production of an autoimmune B cell. Autoimmune B cells arise all the time at random. The problem in autoimmunity is a failure to delete these cells- which does not need any input from immune activation.

 

Probably not because there are autoimmune diseases that do not respond - especially if the plasma cells making the antibodies are long lived.