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Human Papillomavirus: Vaccination:Written question - HL2218

Discussion in 'General ME/CFS News' started by MeSci, Oct 20, 2017.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  2. HowToEscape?

    HowToEscape? Senior Member

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    Six months is a pretty long window, there’s a whole lot of other things which can be going on during that time.

    My doc would not give me the HPV shot because he knows I have MECFS. He is one of the handful of people who actually know something about our disease. But we’re an outlier group, people with immune disorders.

    ———

    I can’t understand why it would be harmful to a person in normal health, especially considering you’ll bump into the live virus sooner or later in life. That’ll be in a quantity thousands of times greater than the inactivated version that’s in the vaccine, and you get a full-blown disease to go with it. Unless you live in a cave, I think the choice is not really vax or no vax, it’s vax at a young enough age that you don’t already have it vs having the virus/virii eventually take up permanent residence. There’s no Safe Space in real life.

    Given a choice of carrying a disease agent for the rest of life versus having an irritation for a day or a week, I know which one I’m picking. Unfortunately in this case I may not have a choice.
     
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  3. Orla

    Orla Senior Member

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    Some people may have had very severe long-term reactions.

    I agree that 6 months is a long window, and I would have some doubts about whether some of the cases can be put down to the vaccine.

    Of course if someone has a reaction immediately following the vaccine and then gets worse again on the second shot that is a bit different. Some cases do seem to be more obvious vaccine damaged, as they have an immediate severe reaction, but other cases I wonder about (even though they could be right).

    I have read some of Nordic Cochrane's responses to the European Obudsman on this issue and if they are presenting it correctly, it looks like the safety review relied too heavily on the drug manufacturers for filtered information.

    http://nordic.cochrane.org/news/com...maladministration-related-safety-hpv-vaccines

    I haven't read their longer piece, or the actual safety review itself, but I am just mentioning it as the issues don't seem so clear-cut as some people are making out.

    I think the area is a bit of a mess as the authorities are trying to deduce whether there is an increase in things like POTS in vaccinated cases, but with the background level of cases most likely being under-reported I think this is an impossible task. As well as this, some of the background cases may be triggered by vaccination.

    I agree with you in the case of some infections vaccination might be the lesser of two evils, but I don't know whether this can be applied in the case of HPV. Unfortunately it is impossible to know at the peak preferred time for vaccination whether that child will be in a high or low risk group for serious damage from HPV. It is also impossible to know in advance whether someone is likely to have a reaction to the vaccine.
     
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  4. HowToEscape?

    HowToEscape? Senior Member

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    @Orla

    Yes, there are many unknowns, and considering that this is a new vaccine perhaps it’s safety has not been demonstrated as well as those which of been around for many years.
    Personally I think there’s been a general decline in honesty and honor, and a regulator is now more willing to farm out responsibility for things like safety research to a party that has an interest in the outcome. It could also just be I’m getting old ;-|

    But afaik we’re discovering that the HPV family of viruses is more harmful than previously thought, and much like the cold sore virus family (to use a highly technical medical term) everyone gets one of them sooner later.

    Ain’t no safe space in life.
     
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  5. Orla

    Orla Senior Member

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    @HowToEscape? I think one of the considerations with this vaccine is that the main negative effects of HPV seem to be in the future (for most people a few decades down the line, though the one used in Ireland also protects against genital warts) but any negative effect from the vaccine will be immediate. It is not like measles or meningitis or something like that where there is an immediate risk with a highly infectious virus, so there is an immediate benefit to the vaccine.

    The smear test is supposed to be very good for picking up on early problems, so long as people go for them regularly. Although these are not done in the older age group (over 65 I think) because of false results that they give in that age-group.

    I don't know what the risk is of serious problems for someone who goes for regular smears. About 40 women a year die in Ireland from HPV related conditions, but I don't know anything about the detail of those cases (e.g. did they go for regular smears, for example. The smear-test programme I think is fairly recent in Ireland. Unfortunately I heard they outsourced the testing to a dodgey private company who were in trouble in the US I think for some poor behaviour :mad:).

    I don't know what I would do if I were younger of if I had children what I would decide for them.

    There was some annoying stuff in the media about ME in relation to this vaccine. Basically the argument was, that the vaccine didn't increase cases of ME here (even though ME is not notifiable, they don't track it, and so have no way of knowing this) and that ME was only temporary and not serious anyway. They were doing this to allay fears about the vaccine, but it doesn't exactly inspire confidence if they put misleading stuff out there about ME. Very annoying as well that we were being used as a political football. Not a peep out of them about ME in the media until it is in their interest for pushing something else.

    Interestingly in Ireland the group for people who think they have been injured by vaccines don't think they have ME, and it does sound like it might be more of a mixed bag in terms of conditions. A lot of them seem to have POTS.

    Another factor I think in the drop in uptake of vaccines here is people can see how the people who think they have been injured by the vaccine have been treated, and they know they will be on their own if they have a problem. Ironically I think the more vociferous the denials about injury, the more they might be putting people off getting vaccinated. I think there is a good chance the group representing the potentially vaccine injured are making mistakes and some unsubstantiated claims, but I think it is possible that some people have a weird reaction to the vaccine (these side-effects are listed by the manufacturer on their patient information leaflet, so it is not really impossible that a small number of people here have been injured). I'd like to see more research in this area, as maybe some people have an auto-immune response to vaccines for some reason?
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    http://www.parliament.uk/business/p...nts/written-question/Lords/2017-10-18/HL2218/
    Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

    [Written Answers]

    Human Papillomavirus: Vaccination
    ---------------------------------

    Lord O'Shaughnessy

    Chronic Fatigue Syndrome (CFS) is a condition that occurs naturally in
    the age group eligible for human papillomavirus (HPV) vaccine. The
    Medicines and Healthcare products Regulatory Agency has completed a
    United Kingdom epidemiological study which found no evidence to suggest
    that HPV vaccine may increase the risk of developing CFS. The results of
    this study were published in a peer-reviewed scientific journal in 2013.

    This finding is further supported by the results of a recent
    population-based study in Norway, which similarly found no evidence of a
    causal association between HPV vaccine and CFS. Copies of HPV
    vaccination and risk of chronic fatigue syndrome/myalgic
    encephalomyelitis: A nationwide register-based study from Norway and
    Bivalent human papillomavirus vaccine and the risk of fatigue syndromes
    in girls in the UK are attached.

    HPV vaccination Norway study (PDF Document, 374.14 KB)
    http://qna.files.parliament.uk/qna-attachments/773017/original/HPV CFS Norway study.pdf

    HPV vaccination: girls in the UK (PDF Document, 439.96 KB)
    http://qna.files.parliament.uk/qna-attachments/773017/original/MHRA CPRD study HPV and CFS.pdf
     
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  7. anni66

    anni66 mum to ME daughter

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    I know two girls who were vaccine damaged and initial reactions were relatively quick. The 6 month timescale may be to brings ME / other chronic illness labels.

    This vaccine appears to have been brought to market quickly, and has had a significant number of " yellow card" reactions registered.

    It is also not made clear to parents that it only deals with a couple of strains, and is a bit like a tetanus shot - it needs " boosted" so not lifetime cover.

    I also know of a teenager from a parents' forum who was innoculated in early stages of ME, and suffered paralysis of legs for over a month afterwards

    If you are healthy and have no inflammation in your body ( growth spurt issues etc) then there is probably little risk.
    But there seem to be many " damaged" young women.
     
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