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HPV vaccination and risk of CFS/ME: A nationwide register-based study from Norway- your thoughts?

Discussion in 'BioMedical ME/CFS Research' started by hedgehog, Nov 25, 2017.

  1. hedgehog

    hedgehog Established Member

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    A Norwegian study came out this year about the link between HPV and CFS/ME.

    For those who don't know, there have been some complaints about onset of ME after receiving the vaccine. This study claims, "Girls who have received one or more doses of HPV vaccine have no greater risk of CFS / ME than girls who have not received HPV vaccine."

    The study:
    http://www.sciencedirect.com/science/article/pii/S0264410X17308083

    Summary (source: solvecfs):
    I'm hoping to get thoughts on this study, since I'm not able to ingest all of it due to cognitive issues. I personally had sudden onset ME 2 weeks after receiving the Gardasil HPV vaccine and would like to know for sure if it's just a coincidence. My question is: Is this study definitive? Would there be issues with diagnosing ME in the first place, or would that not affect the outcome of the study?
     
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  2. Amw66

    Amw66 Established Member (Voting Rights)

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    I know of two teenage girls who have same etiology. One if whom has had a horrific time as medics do not accept HPV vaccination as trigger ( threats of foster care ti get her into school)
    There is a gardisil advocacy group in UK - they have a Facebook page- it may be eorth checking out.
    . Another teen from parents' forum who had ME and subsequently had HPV vaccine last year had leg paralysis for two months- scary.
    There are simply too many yellow card incidents on this vaccine.
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Hi Hedgehog. This isn't an area I know a lot about, but I thought I'd share my views anyway.

    No single study can be definitive, but the discussions I've read about this makes it sound as if this was a decently done study (I've skimmed it and it did seem to do a good job on indicating HPV vaccine does not increase the risk of being diagnosed with CFS, but I wouldn't trust me on this). They did explain the limitations of their study with regard to the diagnosis of CFS, the fact that this can take time, is uncertain, etc, but I don't think that these problems would have affected those with CFS post-vaccine more than those who came down with CFS without having the vaccine. Currently there isn't any good evidence to indicate that the HPV vaccine is associated with an increase in the incidence of CFS, so that makes the studies findings seem plausible.

    It could be that it's just some people just co-incidentally come down with CFS soon after their vaccination, and when they look back think that the vaccine is a possible explanation. I guess it could be that some people go through a 'weak' period when any sort of infection/vaccine could trigger CFS, and therefore there's a temporal relationship, but those who do not get the vaccine will have CFS triggered by something else, so there's no difference in overall rates of CFS? Also, my understanding is the PoTS can often occur at a similar age period to when the HPV vaccine is given (I think that's just based on a lecture I watched about PoTS though, rather than my looking at the evidence, so may not be right), so that could explain why there is concern that it is the vaccine triggering this health problem.
     
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  4. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I don't think anyone is going to be able to give you assurance about any possible connection @hedgehog but Norwegians do keep very thorough records.

    A lot of girls who have been given the vaccination report ME onset shortly after. It's a bit reminiscent of infants showing signs of autism shortly after receiving the first MMR. Is there a genuine connection or does this just happen to be the age that autism usually becomes apparent, i.e. the second year of life?

    You might also find this other Norwegian study interesting. Take a look at the graph in Figure 1 - the incidence of ME/CFS is at its highest in girls right around the time that they are getting the HPV vaccine but the incidence is already increasing notably before 11 years of age.
     
  5. hedgehog

    hedgehog Established Member

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    @Amw66 Those are frightening cases. Thanks for letting me know about the advocacy group.

    @Esther12 Those are all good points and very helpful! I was also thinking along the same lines, that the vaccine may trigger ME in some people who already have a predisposition for it. If someone is predisposed, it'd be handy to know that and avoid it, even if that only buys a few more months or years before onset.

    @Scarecrow The graph is very interesting, and that theory makes sense. Wow, Norway seems to be a hub for cfs/me research. Thank you
     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Pleased to hear it was of some use. Just to be clear, there's no real evidence of the HPV vaccine leading to even just a slightly earlier occurrence of CFS in predisposed individuals... but it seems that something like that would be harder to pick up in a study like this.
     
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  7. Woolie

    Woolie Senior Member (Voting Rights)

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    I believe that in many of those reported cases, the HPV vax could have genuinely triggered the ME*. But those cases are probably so rare that they're unlikely to show up on any population database.

    Besides, more importantly, if it hadn't been that trigger, I suspect it would have been something else further down the line.

    Those of us with a sudden illness onset have spent a lot of time reflecting on what might have happened if we hadn't got "that" infection, or experienced "that" event that set it all off. Its probably not helpful to think like that. I suspect there's something constitutionally different about PwMEs when compared to healthies. And any number of triggers could kick off that spiralling set of events that lead to ME. If it didn't happen when it did, it probably would have happened further down the line.

    And for every person that got sick following a vaccination, there are hundreds that got sick following a naturally occurring viral infection - if those people had had immunity earlier (by way of a vaccine or whatever), that infection might not have been so severe, and it might not have set off full ME. So, in terms of OVERALL ME risk, being vaccinated is probably the safer bet.

    *The reason I think this is because I've recently been given a vaccination challenge by my doc, which caused me to have a horrificly severe immune reaction. Those of us with f**ed up immune systems can act weirdly even to small challenges like that.
     
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  8. hixxy

    hixxy Established Member

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    @Woolie Those are my thoughts as well.
     
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  9. Amw66

    Amw66 Established Member (Voting Rights)

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    I think there is a not insignificant cohort for whom vaccination is a definite trigger.

    Given the ME historical links to polio i did find the temporary paralysis effect from HPV interesting - i don' t know how common this is to know if it' s significant.
     
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  10. Amw66

    Amw66 Established Member (Voting Rights)

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    Hope you are recovered from this and back to your normal level of function
     
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  11. Amw66

    Amw66 Established Member (Voting Rights)

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    Definitely a hormonal link- too few studies done on this aspect ( vaguely remember a similar one also being Scandinavian)
     
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  12. Woolie

    Woolie Senior Member (Voting Rights)

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    Thanks, @Amw66! A bit better now, but 4 weeks later, still feeling the effects.

    I learned lots about what happens to you immune-wise after a vaccination challenge. The first thing that happens is the inflammatory reaction, which starts within the first 24 hours. I got my bloods done on Day 4, and my levels of inflammation were through the roof (extremely high CRP). Obviously, healthy people get only a really, really mild version of this, but apparently their CRPs go up a bit too, just not so much.

    Then within about a week you start producing antibodies (if you're normal). The levels of antibodies apparently reach their peak at around 4 weeks. By Week 3, I felt unusual aches and pains, especially in my shoulders and neck, which I suspect is something to do with antibody production.

    I was given three vaccinations at once: dyptheria/tetanus and a flu vax called Act-HIB and a pnuemococcal vax (spelling?). One of these is apparently a "live" vaccine (cant remember which), and this might perhaps make a difference.
     
    Last edited: Nov 26, 2017
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  13. Amw66

    Amw66 Established Member (Voting Rights)

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    Interesting re shoulder and neck pain.y daughter suffers from this almost continually as well as swollen glands ....i had never thought of antibodies , more acrual and referred pain
     
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  14. andypants

    andypants Established Member (Voting Rights)

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    I was too old to get the HPV vaccine, and anyway I got ME at a much later point.

    Now I have HPV and ME :emoji_stuck_out_tongue_closed_eyes::emoji_face_palm:
     
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  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    I wanted the HPV vaccine but was told I was too old.
     
  16. Amw66

    Amw66 Established Member (Voting Rights)

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    Interestingly i spoke with a mum whose daughter has ME following Gardisil injection today.
    She has a referral to the homeopathic hospital as they provide pills to deal with lack of menstruation - seemingly sorts out hormonal issues these girls have.
    She will give me more details after her consultation.
    Her daughter was 12 when onset occurred - i don' t know if age affects this side effect
     
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  17. Valentijn

    Valentijn Moderator Staff Member

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    Is the hospital truly homeopathic (dilutions only) or more generally naturopathic?
     
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  18. Amw66

    Amw66 Established Member (Voting Rights)

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  19. Amw66

    Amw66 Established Member (Voting Rights)

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  20. cyclamen

    cyclamen Established Member

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    Maybe an interesting lecture from Dr Wallukat about autoantibodies in POTS and CRPS and special ones after HPV vaccination.

    http://www.potsuk.org/lectures

    I do not know, how in other countries the listing of adverse events after Vaccnation are handled by doctors. In Germany no cases of POTS have been reported since several years. Doctors do not do it any more, they have heard of the exculpating studies. They are sure there is no connection, so they do not report POTS after vaccination, but declare these symptoms are just in the girls´s heads.
     
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