1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Flu shot? I'm not even tempted, but....

Discussion in 'General ME/CFS Discussion' started by determined, Jan 3, 2014.

  1. determined

    determined Senior Member

    Messages:
    293
    Likes:
    47
    USA: Deep South
    I am wondering how many of us feel that trouble began with a vaccine.

    I am hearing a lot about H1N1 this flu season, and several friends have had pretty bad cases. I realize getting this flu would not be ideal, but I still don't want to risk the vaccine.
  2. Ayaju

    Ayaju Senior Member

    Messages:
    151
    Likes:
    86
    San Diego, CA
  3. Ambrosia_angel

    Ambrosia_angel Senior Member

    Messages:
    440
    Likes:
    234
    England
    Well my mum highly recommend me not to get it done as the side effects are pretty bad. To be honest they don't stop flu or sickness anyway.
  4. alex3619

    alex3619 Senior Member

    Messages:
    6,833
    Likes:
    10,404
    Logan, Queensland, Australia
    Flu vaccines are generally recommended by ME docs. However you have to consider all the factors. While a flu vaccine might set you back, H1N1 could set you back a lot. However if you are fairly isolated and don't allow people with the flu near you, the risk is reduced. Also many of us do not develop proper immunity.

    There appears to be an opinion that the flu shot stops the flu. It doesn't in most cases. It has two aims. The first is to improve the speed of the adaptive immune response, and so decrease the duration and severity of the flu, hopefully all the way down to "I have a flu?". The second is that any one vaccine only covers a few strains. Increased immunity becomes more apparent if you do this every year, and so get increased immunity to many strains and not just a few.

    However our possible lack of seroconversion, or loss of seroconversion, means that we probably don't build up increased tolerance to a flu.

    I think the use of mercury in vaccines is very rare if it occurs at all in recent years. In any case I think the main problem with vaccines is adjuvants, immune stimulating factors. If you have a tendency to immune overactivation, which we appear to, this might induce a more extreme response. Every vaccine has adjuvants, though there is research on developing adjuvant free vaccines.

    This is always a tough call.

    PS One vaccine I think we should avoid like the plague is Hepatitis B vaccine. Unless you are at high risk the extreme rate of relapse from this vaccine in CFS (not studied as ME) makes it unwarranted.
    Last edited: Jan 3, 2014
    SOC likes this.
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,193
    Likes:
    6,056
    USA
    @alex3619 is making a lot of sense. :) There is not a single correct answer for all of us. You have to consider all the issues and make the best decision you can for yourself.

    My daughter and I both got H1N1 in the 2009 outbreak when our GP wouldn't give us the vaccine because he didn't believe we were in an at-risk population. We were both sick for months, and both got pneumonia. We both had a huge decline in health and I never got all the way back to where I was pre-H1N1.

    We get flu shots every year at the recommendation of our ME/CFS specialists. We don't get live virus vaccines. This year our specialist advised/reminded us to get the preservative-free one, which gave neither of us any trouble. In the past I've had a week or so of a little extra fatigue and muscle aches with flu shots, but not with the preservative-free this year. I'd still rather have the week of minor symptoms than the weeks (and even months) of misery I've had with the flu in the past.

    However, my daughter is in college and I tutor, both situations which expose us to more infections than some ME/CFS patients encounter. People who are housebound and without a lot of outside exposure have a much lower risk of infection, so the vaccine might not be worth it to them.

    Also, some of us don't seroconvert, so the vaccine could be pointless. And some people react badly to vaccines in any case, so if you've had a bad reaction in the past, getting another is probably not a good idea. These decisions are never easy for us. **sigh**
    Last edited: Jan 4, 2014
    determined and alex3619 like this.
  6. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    288
    Massachusetts
    I perform a lot of flu testing and there is a LOT of flu compared to previous years and there is quite a bit of H1N1 being seen this year. All age groups are effected.

    Most of my colleagues (in a Microbiology lab) did not get the flu vaccine. Some may reconsider but several of us are sick (of course... we've not tested ourselves for flu!). Many of us are overextended having worked many hours over the holidays and we're now getting through blizzard conditions and frigid temps.

    Before I get a flu shot, I'll probably test myself for the flu. I'm exposed to so much stuff everyday at work, to expose my self to an flu antigens and adjuvents seems unnecessary. I've never had the flu before but I don't want H1N1.

    It can be a bit nerve wracking when you know you have live H1N1 virus in your hands but it is a part of everyday life for those working in healthcare.
  7. barbc56

    barbc56 Senior Member

    Messages:
    1,299
    Likes:
    661
    I started getting annual flu shots when I was teaching. I still get one every year. I can't imagine getting the flu on top of this awful illness. @JT1024, stay warm. I heard it was pretty bad in Boston. It is going to be horrific here in Illinois and the high for Monday is MINUS 6 degrees!!! WTF?? (that means Waiting To Freeze.) ;)
  8. bel canto

    bel canto Senior Member

    Messages:
    187
    Likes:
    169
    Take good care of yourself, JT!!
    You've had such a tough year, and that's hard on anyone physically.
  9. A.B.

    A.B. Senior Member

    Messages:
    483
    Likes:
    1,242
    What's the reasoning for treating this one differently?
  10. Firestormm

    Firestormm Senior Member

    Messages:
    5,821
    Likes:
    5,941
    Cornwall England
    I usually have a flu shot annually. This year (last year) through laziness and because I forgot, I didn't. Am now into my second flu-like infection. I was down with it before Xmas and then again from Boxing Day. I blame my adorable rug-rats - little buggars.

    Of course it could all be coincidence - and only time will tell I suppose. In 2011 we were in the at risk group along with Parkinson's and a flu-shot was recommended. I think you can still get one for free if you feel it necessary - I certainly did in 2012 - as someone with a chronic illness. I wish I had done last year for peace of mind if nothing else.

    People have asked how can I tell it's the flu and not a relapse of the ME. Believe me you know. This time there's a lot of snot for a start, but the swollen glands while only slightly larger than normal, have led to a much sorer throat, and the fever/high temperature, the different headaches, the congestion, the full bin of used tissues and sneezing, running eyes, ... yeah it's the flu round 2.

    I dare say the quack will concur on Monday.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,438
    Cornwall, UK
    I know that Action for ME are not exactly flavour of the century/epoch/whatever, but this document from 2011 may be of interest.
  12. alex3619

    alex3619 Senior Member

    Messages:
    6,833
    Likes:
    10,404
    Logan, Queensland, Australia
    They tested the effects of Hep B vaccine on CFS patients in the 90s I think, in the UK. 20 CFS patients, 19 got substantially worse, and one improved after the vaccine. I do not know if this was a formal or an informal trial though. Its also one of the vaccines that is repeatedly cited as a problem in CFS, though most of this (if not all of it aside from the small trial I just mentioned) is anecdotal. In addition at least several ME docs have cited the hep B vaccine as a possible trigger for ME.
    JT1024 likes this.
  13. A.B.

    A.B. Senior Member

    Messages:
    483
    Likes:
    1,242
    Do you know anything about how the Hep B shot triggers the problem? Are delayed reactions possible? I'm interested because in my case, I started having extreme but intermittent morning fatigue around the time I had a Hep B shot. A year or two later, I suddenly got much worse and haven't recovered ever since. I don't know if the shot is to blame but I would like to find out if in any way possible
    Star-Anise likes this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    6,833
    Likes:
    10,404
    Logan, Queensland, Australia
    Hi @A.B. , the answer is no. However I think someone just won a court case in the US (if I recall correctly) based on getting CFS from the Hep vaccine, though its possible I am mixing that up with something else. This was last year, maybe late last year.
  15. Kina

    Kina Moderation Team Lead

    Messages:
    5,147
    Likes:
    3,462
    Ontario, Canada
    We just had our first reported death from H1N1 this flu season.

    The person was under 65 years old and had no other underlying health issues. He died from the flu. He did not get the flu shot which did contain the strain he died from. Now one can't say if getting the flu shot would have prevented this, but it certainly is scary. I really hope sick people stay at home and don't breathe on people like me. I got the flu last year and the effects lasted for months on end. I remember being in the grocery store once and a woman was coughing and coughing over everything. People were glaring at her because she wasn't covering her mouth. She said something like it was okay to do this because 'her bronchitis wasn't the infectious type'. Mind boggling.

    I guess the bottom-line is -- it's a personal choice whether or not one gets a flu shot based on a whole bunch of different personal variables. I used to get one when I was a healthy R.N. and exposed flu viruses all the time. I haven't had one in over 12 years and I think I have had the flu maybe 2 times. I don't know what happened to me because for years I didn't even get a cold or the flu; now it seems I pick up everything. I might want to rethink my decision on the flu shot.
    barbc56, Firestormm and MeSci like this.
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,930
    Likes:
    8,061
    Amersfoort, Netherlands
    There's been a few studies of ME/CFS patients getting flu shots. The general result was that 1) the shots work as they're supposed to regarding conferring protection from the flu, but 2) ME/CFS patients have an abnormal immune reaction to the shots which lasts for at least a month.
    SOC likes this.
  17. Firestormm

    Firestormm Senior Member

    Messages:
    5,821
    Likes:
    5,941
    Cornwall England
    What all patients have an abnormal reaction, @Valentijn ? I did not know there had been any studies - only patient surveys. Have you got any links? Thanks :) :)
  18. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,930
    Likes:
    8,061
    Amersfoort, Netherlands
    Firestormm likes this.
  19. Soundthealarm21

    Soundthealarm21 Senior Member

    Messages:
    218
    Likes:
    185
    Dallas, TX
    I've stayed away from vaccines for this entire last year. Personally, I think a lot of them have done a tremendous amount of good for the world, but I will not put a virus into my body whilst i'm in the middle of trying to get rid of the ones I already have.
  20. Wayne

    Wayne Senior Member

    Messages:
    2,183
    Likes:
    1,253
    Ashland, Oregon
    I seem to remember a PR member who went by the username, something like, "IgotCFSfromaflushot". When it comes to doing anything for my health, I always consider the risk/reward ratio. For myself, any kind of vaccination shot is simply out of the question. The risk is way too high. Also, I'm of the CFS profile of someone who virtually never gets a cold or a flu. For those who find themselves battling the flu, you may want to consider high doses of liposomal Vit. C.

See more popular forum discussions.

Share This Page