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

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 4, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    We have just updated the MEA flu vaccine leaflet to cover the vaccine that is being used this year

    This leaflet is currently free to download from the MEA website:

    http://www.meassociation.org.uk/201...about-the-201718-flu-vaccine-04-october-2017/

    Feedback on the use of flu vaccine is welcome - this will help us to keep the 'patient evidence' up to date

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    MEA website online shop:
    http://www.meassociation.org.uk/shop/

    Complete MEA literature order form (August 2017):
    http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-Autumn-2017.pdf
     
    Last edited: Oct 4, 2017
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  2. Skycloud

    Skycloud Senior Member

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    Thank you, the information is really good. I struggle with this decision every year
     
    Jennifer J likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    Nope. Won't get one. I had the pneumonia vaccine in the fall of 2013 and...got pneumonia. It depends on your immune system, but I am against them unless absolutely necessary. Measles and the like.
     
  4. belize44

    belize44 Senior Member

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    I will never have a flu shot again, as I became disabled shortly after receiving my first and last one. It was mandatory since I worked in healthcare, alas.
     
  5. Skycloud

    Skycloud Senior Member

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    I developed something very like measles (it may have been) recently that I am still coping with the effects of. I left the house twice during the period in which I could have caught it - to go to the GP surgery and a hospital appointment. I'm not keen to go back for a flu jab!
     
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  6. Wonkmonk

    Wonkmonk Senior Member

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    Also many thanks from my side, this is a great resource.

    That 27% or about 1 in 4 CFS patients say the flu vaccine made them 'much worse' in the online poll is worrying.

    But an interesting question that no one seems to have studied is how non-vaccinated CFS patients who actually did catch the flu compare to those who took the vaccine.

    Given that severe infections are very likely to make many patients much worse, it may be worth taking the risk of getting vaccinated and being among the 27%, but then having a good chance of avoiding actual infection and (probably even worse) adverse effects.
     
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  7. snowathlete

    snowathlete

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    That's a thorough report Charles, noting the potential downsides as well as the benefits. Great stuff from the MEA, thank you. My family will be getting it. I won't simply because I'm largely immune to cold and flu since getting ME, but if I wasn't I'd probably have it.
     
  8. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    My previous GP refused to give me the flu vaccine many years ago because she said it could make ME sufferers worse. Consequently, I've never had it and would be concerned about any negative impact on my health if I did get it done.
     
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  9. Wonkmonk

    Wonkmonk Senior Member

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    @Ysabelle-S But if you are actually getting the flu, there would probably also be a negative impact, so if there is a good chance that can be avoided by getting vaccinated, it might still be worth it even if the vaccine also has a risk of negative impact.

    I'm not suggesting that you (or anyone) take or not take the vaccine, just saying there are two sides of the coin.
     
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  10. Mithriel

    Mithriel Senior Member

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    Had the jag last Saturday and no adverse effects. My ME became much worse when I had flu so I never want to get it again.
     
  11. Wonko

    Wonko Senior Member

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    The other side.
    I was offered one about a decade, or maybe longer, ago. It made me worse, not "much" worse, not bedbound or anything but worse. I was reasonably comfortable at the time, moderate physical limits, significant cognitive impairment but not a lot of pain and my envelope allowed me to live reasonably comfortably, couldn't work, couldn't socialise etc. but apart from that I was okay.

    After the flu jab pain levels went up considerably, flu like symptoms went up a lot, it wasn't possible to be comfortable, cognition went down, sensitivity to noise/light went up massively, it was unpleasant. Lasted months.

    At the time (before the jab) if I caught a bug that was doing the rounds, flooring people, I would have it for a morning, get pre-immune activation symptoms, be mildly uncomfortable for a few hours (with a bit of dizziness, nausea, muscle pain etc.), and then it would pass.

    Flu jabs - bad.

    Never again.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Near the start of winter here in australia the tv news stated we had one of the highest rates of flu vaccines this year. A few months later they were saying we had the highest rates of influenza in along time and severe as even young health adults were being hospitalised for influenza and it wasnt just the elderly and the very young getting sick.

    What happened to this herd immunity they keep talking about.

    A couple years back griffith university in australia, the guys who do the nk function studies on cfsme people, they did a study on cfsers and the flu vaccine and the conclusions were it wasnt effective. I cant recall why, eg if it was because of our faulty immune system or not?
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Did you see the two case reports in the BMJ that I refer to in my review:

    Adverse reactions

    The only published research study into adverse reactions to flu vaccine in people with ME/CFS concluded that people with ME/CFS were no more likely to have a serious adverse reaction than people receiving this vaccine for recommended reasons.

    However, two case reports involving health workers who developed ME/CFS after swine flu vaccination have been reported in the British Medical Journal. Both developed moderate to severe symptoms and were unable to return to work.

    • Reference: Should influenza vaccination be mandatory for healthcare workers? BMJ, 2013; 347:f6705.
     
  14. Groggy Doggy

    Groggy Doggy Building a New Home

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    I would rather risk the chance of getting the flu, than risk the chance of living with any permanent damage associated with the vaccine.

    I usually try to be careful and avoid getting into situations where I could catch the flu.
     
    Last edited: Oct 4, 2017
  15. charles shepherd

    charles shepherd Senior Member

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    Exactly!

    There isn't a simple yes/no answer to having a flu vaccine if you have ME/CFS and my usual advice to patients is to weigh up all the information and evidence - both anecdotal and published - and come to a decision based on individual circumstances

    On a personal basis I don't usually have a flu vaccine but may decide to do so this year - as it looks as though there may be a nasty dose of flu on the way…..

    CS
     
  16. Old Bones

    Old Bones GOING, going . . .

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    I was seeing a hematologist/internal medicine specialist during last fall's prime "flu shot season". When asked if I'd had my flu shot yet, I answered that I'd heard ME specialists were pretty much evenly divided in opinion regarding flu shots for this patient group -- half "yes", the other half "no". I explained that since I'd only had the flu once in the almost 30 years since my viral onset, I had decided against having the shot. Her immediate response: "I think that's a very wise decision."

    My husband did have last season's vaccine -- in part to protect me since he's in contact with a lot of people. He became ill immediately afterwards including his first taste of many of the neurological symptoms I've experienced for decades. We've often considered that the flu shot triggered "ME lite" in him, because although he's mostly recovered, he still has some mild residual symptoms he didn't have before the shot. Needless to say, there will be no flu shot for hubby this year.

    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?
     
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  17. charles shepherd

    charles shepherd Senior Member

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    I think you are referring to the Breu et al research that I quote in the review - as below

    If so, I don't think they concluded that flu vaccine was not effective in ME/CFS (but I would need to go back to the paper)

    CS

    Research into flu vaccines and ME/CFS

    The effect of influenza vaccination on ME/CFS was examined in an Australian pilot study which found that vaccination is accompanied by a degree of immune system dysregulation in ME/CFS patients compared to controls and that the vaccine has the ability to increase cytotoxic activity and pro-inflammatory reactions post vaccination (Brenu et al 2012). However, Prinsen et al (2012) found that humoral and cellular immune responses following influenza vaccination were comparable in ME/CFS patients and healthy controls.

    Reference: Brenu EW et al. The effects of influenza vaccination on immune function in patients with chronic fatigue syndrome/myalgic encephalomyelitis. International Journal of Clinical Medicine, 2012, 3, 544 – 551.

    Reference: Prinsen H et al. Humoral and cellular immune responses after influenza vaccination in patients with chronic fatigue syndrome. BMC Immunology, 2012, 13, 71.
     
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  18. *GG*

    *GG* Senior Member

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    Not seeing where we can download it as PDF, what am I missing?

    GG
     
  19. Dolphin

    Dolphin Senior Member

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  20. Wonkmonk

    Wonkmonk Senior Member

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    "Chronic fatigue syndrome has also been reported in confirmed sufferers of swine flu (5)"

    That's the problem, you can get it from getting vaccinated but also from not getting vaccinated and then getting sick.

    It's the same with Guillain-Barre Syndrome. The flu vaccine is known (or strongly suspected) to - very rarely - trigger the disease, but getting the flu is also known (or strongly suspected) to trigger it.

    With respect to Guillain-Barre Synrdome, there are some reliable numbers:

    The likelihood for getting GBS after influenza infection is estimated to be 1:10,000
    The likelihood for getting GBS after influenza vaccination is estimated to be between 1:100,000 and 1:1,000,000

    https://en.wikipedia.org/wiki/Influenza_vaccine#Safety

    So assuming the numbers are reliable, if you're concerned about GBS: you are 10 to 100 times likelier to get GBS if you don't use the vaccine and get influenza infection as opposed to getting the vaccine and not getting influenza infection (*)

    The problem with CFS is: We don't have reliable numbers. In how many cases is CFS triggered in healthy people by the flu vs the flu vaccine? Case reports don't give an answer.

    And the question is the same regarding negative effects for those who already have CFS. Making it even worse, it probably differs depending on what subgroup of CFS you have (viral-trigger, Lyme, autoimmunity-driven etc.).

    So it's really hard to know what to do. A 3rd option would be not using the vaccine, but using antivirals (e.g. Tamiflu) immediately when any symptoms appear. That's perhaps what I am going to try this year.

    (*) of course, you can use the vaccine and still get sick or not use the vaccine and be lucky and not get sick, but let's leave that aside for simplicity. (it would make the vaccine a bit less attractive, but it is still a much lower risk of GBS overall)
     
    ladycatlover likes this.

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