The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Flu Vaccination

Discussion in 'General ME/CFS Discussion' started by yabeeb, Oct 14, 2014.

  1. yabeeb

    yabeeb

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    Not sure where to post this so guessing here.

    Am wondering if anyone from the UK gets the free flu vaccination at this time of year?

    I'm sure there are probably arguments for and against. Just wondering what other people do.

    Thanks
     
  2. soxfan

    soxfan Senior Member

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    since I have a month old granddaughter I decided to get the flu shot this year...I had no adverse effects from it as of yet anyway.
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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  4. Butydoc

    Butydoc President

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    Hi Yabeeb,

    I'm not from the UK, but also struggled with this issue. Dr Montoya an infectious disease and CFS/ME specialist from Stanford University feels that the vaccine should be given if the individual is not actively in a crash. I had the vaccine 4-5 years ago with a subsequent crash that lasted a few months. I wasn't completely sure it was from the influenza vaccination but it did seem to be temporally related. Recently I tried the vaccine again with a subsequent crash that has lasted 3 weeks and is finally improving. I'm fairly sure this was a reaction to the vaccine. I believe I'm in an hyper immune state in general since I haven't had a cold in 11 years. I feel my crash was directly related to my hyper immune state over reacting to the vaccination. No science to prove it but certainly suspicious. I guess the question would be, what is worse, the flu or the vaccine?
     
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  5. *GG*

    *GG* Senior Member

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  6. Tammy

    Tammy Senior Member

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    A friend of mine got CFS after a flu shot..............coincidence or not...............I intuitively feel for myself that it would not be good for me.
     
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  7. yabeeb

    yabeeb

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    Thanks for this. Really useful. I have had the vaccine before and not had a serious reaction/crash. However, I have just had a horrible cold which has wiped me out. Like you, this is highly unusual for me. I NEVER get colds anymore whereas before ME i got them all the time. Anyway my point is that the cold was pretty horrible and I can imagine flu being ten times worse. I think I might go to my GP and discuss then. One reason I was put off also, is because a homeopathist once told me never to get flu jab as it alters your immune system and your body becomes less effective at defending itself. No idea if this is true or not but i can't imagine the NHS would invest so much in making sure vulnerable people have it if it posed any real threat. They don't invest in anything without a robust evidence base.
     
  8. charles shepherd

    charles shepherd Senior Member

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    Info from MEA on flu vaccination:

    We have an MEA information leaflet that covers flu vaccination and ME/CFS in detail

    The key points are summarised below

    ME/CFS is classified as a neurological disease - so you should be able to have one on the NHS (in England) if you decide to do so

    Confirmation from Dame Sally Davies, Chief Medical Officer at DoH:

    "As you know, the risk of serious illness from flu and consequent hospitalisation and death is higher among those with underlying health conditions such as M.E.. We know that people with chronic neurological conditions are approximately 40 times more likely to die if they develop flu than individuals who have no other underlying health conditions.

    The best way for people at risk from flu to protect themselves and their families is to get the flu vaccine. People with clinical risk factors are eligible to receive the seasonal flu vaccine free each winter."

    SUMMARY OF MEA INFO ON FLU VACCINE AND ME/CFS:

    A dose of flu can easily cause a significant relapse of ME/CFS and if this has happened in the past then a vaccination is well worth considering - especially if you are in contact with people who may be infected.

    People with ME/CFS who have other chronic illnesses affecting the heart, kidney, immune or respiratory function, where a dose of flu could cause serious complications, should also discuss having a flu vaccination with their doctor.

    On the other hand, people with ME/CFS do sometimes report having a relapse or significant exacerbation of symptoms following a vaccination - especially when they are experiencing flu-like symptoms. This may be related to the fact that some research evidence indicates that there is low level activation of the immune system in ME/CFS - rather than immune system deficiency. But if you do have evidence of lowered immunity due to illness then this is another recognised indication for having a flu jab on the NHS.

    We have an MEA information leaflet that covers all aspects of flu vaccination as they apply to ME/CFS in more detail, including a summary of research findings.

    We also have an MEA leaflet covering the research that has examined the link between vaccines and ME/CFS

    The MEA website polls archive section (>> p3) of the MEA contains the results of feedback from people with ME/CFS who have had a flu vaccine in the past.

    Start Date: December 1, 2008 @ 2:09 pmEnd Date: November 2, 2009 @ 2:09 pm

    • How did your flu jab affect your ME/CFS symptoms?

    ◦ I felt the same (45%, 86 Votes)

    ◦ I felt much worse (27%, 52 Votes)

    ◦ I felt slightly worse (22%, 42 Votes)

    ◦ I felt slightly better (4%, 7 Votes)

    ◦ I felt much better (2%, 4 Votes)

    • SEE ALSO:

    1 Flu vaccine causing ME/CFS-like side effects:http://www.dailymail.co.uk/.../300-000-doses-flu-vaccine...

    2 Should influenza vaccination be mandatory for healthcare workers? We report two cases of Chronic Fatigue Syndrome (CFS) after Swine Flu vaccination. http://www.bmj.com/content/347/bmj.f6705/rr/687260

    3 Information from NHS Choices website:

    Under the guidelines drawn up by the Department of Health people living with CFS are entitled to the seasonal flu vaccine as they are defined as living with a serious long-term condition.

    Though there may be both pros and cons associated with vaccination. Catching the flu when you are already experiencing symptoms such as fatigue can be very debilitating so vaccination can protect against that.

    On the other hand some people with CFS who received a vaccine reported that the vaccine appeared to make the symptoms of CFS more severe.

    In a small survey carried out by the ME Association, just under half of people said vaccination made no difference to their symptoms, a fifth said it made it slightly worse and a quarter said it made it much worse. While a small minority of people surveyed (6%) said vaccination appeared to make their symptoms better.
     
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  9. Valentijn

    Valentijn Senior Member

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    There's been at least two studies, and I think there's a third as well, looking at the flu vaccine in ME/CFS patients. Basically the vaccine "worked" in providing the expected protection, but it also produced an unusual immune reaction measured via blood tests. The longer study lasted 28 days, and the abnormalities were still present at that time.

    So basically the vaccine works for us, but also screws with us in an mysterious manner for an indefinite amount of time.

    Oh, and here's a post with links to two studies and some brief exerpts: http://forums.phoenixrising.me/inde...-the-cause-of-me-cfs.21737/page-2#post-335324
     
    Last edited: Oct 18, 2014
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  10. charles shepherd

    charles shepherd Senior Member

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    Yes, these studies are summarised and referenced in the Vaccine section of the MEA purple booklet:

    The effect of influenza vaccination was examined in an Australian pilot study which found that vaccination is accompanied by a degree of immune 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.
     
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  11. jimells

    jimells Senior Member

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    Like @Butydoc I haven't had a cold or flu-type illness for five years. Maybe it's because I seldom have contact with anybody besides my birds. They are never ill (good thing since the nearest avian vet is many hours away).

    With all the conflicting evidence and experiences I have to wonder if the most scientific way to decide would be to flip a coin.

    p.s. I've never had a flu shot and I'm not going to start now.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I was told specifically by my doctors not to get the flu shot or vaccines as my immune system is not normal right now and it would be another immune system trigger. I have heard of people getting ME/CFS following a flu shot and many young girls getting it from the Gardisil vaccine. I have never gotten a flu shot in my life and will not be starting now! My body reacts to minute amounts of everything and I know it could not process correctly whatever is in that shot.
     
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  13. NK17

    NK17 Senior Member

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    The only time I got vaccinated against the flu was back in 2005 late fall, back then I was still undiagnosed as far as ME, but already had symptoms for many many years.

    Early winter 2006 I got really sick with what seemed a case of flu, except I did not run a fever nor did I have any cold or any upper respiratory symptoms.
    I suffered several days of excruciating all over body aches and pains, like I'd never had before, which no OTC NSAID would abate.

    Looking back on this episode (which is only a personal anecdote) I think I can say that the flu shot did not cause my ME, but certainly shifted the already delicate and dysfunctional "balance" of my immune system.

    IMO the decision to get the flu shot or not is a difficult and very personal one for PWME.

    Maybe our healthy family members and close relatives, friends and acquaintances should get vaccinated and we should definitely make sure that our Vit D levels are high enough to boost our natural self defenses.
    Actually everybody should have their Vit D levels checked and should supplement with Vit D3 accordingly.
     
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  14. rosie26

    rosie26 Senior Member

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    I've never had a flu shot in my life. I don't feel it would be safe for me to have it, not with the way my head feels. But, I understand for some with ME, it is important to have it when weighing up their own risks.
     
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  15. charles shepherd

    charles shepherd Senior Member

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    I think the key message here is that having a flu vaccination if you have ME/CFS has to be a decision based on individual medical circumstances.

    As a doc who also has ME, I have taken the decision not to have flu vaccine and take the risk.

    The points about family members and close contacts doing all they can to avoid getting flu, and avoid passing it on if they do, are all very valid.

    Vitamin D status in ME/CFS is also very important and people with moderate to severe ME/CFS should certainly have their level checked, especially if they don't get out in the sunshine. There is now research evidence confirming that ME/CFS can be associated with vitamin D deficiency.

    Three simple ways of ensuring vitamin D status is OK are having 15 minutes of skin (face and arms) exposure to day/sunlight each day, eating oily fish, and (if necessary) taking a supplement. But supplements must not be taken in excess because there are dangers in taking too much vitamin D when it is not required.
     
  16. justy

    justy Donate Advocate Demonstrate

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    This is a really hard one to decide for me... my M.E is pretty bad at the moment and couldn't risk worsening it, either with the flu or with the vaccine. On the other hand I have longstanding lung problems. I have had the flu twice in the past 6 years and was miserable, but ok. I have also had pneumonia twice. I just avoid doing anything in the end and just hope for the best.

    My Vit D is quite severely low (D3) but the other type Vit D 25 ioh was normal - I dont know what this means
     
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  17. yabeeb

    yabeeb

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    Thanks all for your help and feedback!
     
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