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To vaccinate or not me and my children

Discussion in 'General ME/CFS Discussion' started by nina_online, Apr 11, 2016.

  1. nina_online

    nina_online

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    Austin, TX
    Hi everyone,

    I've been searching through the forum to read what people think about vaccinations but came to nothing conclusive. I looked at some of the scientific research, but I don't have access to PubMeds I can't read the full papers. It seems like some of the research, e.g. linking vax with diabetes-1, had since been reversed. Some of the CFS doctors I have seen recommend the flu shot and others don't. I don't have a current CFS doc to ask about vaccines.

    The clinic where my children (ages 9 and 12) see their pediatrician is now requiring full vaccinations. My children are partially vaxed. I went to see another pede who is flexible about vaccines, to see what she thought about vaccinations for my children given that I have CFS. I hope they don't get CFS and don't want to do anything to trigger it. (FYI, one daughter has ADHD and the other, Anxiety disorder. They and I seem like candidates to have a methylation disorder, although I do NOT have the MTHFR genetic mutation. I doubt my husband does, bc he has no related health issues.)

    Her points were:
    - The issue is the live vaccines, so don't give more than 1 live vaccine at the same time (and she made up a vax scheule for us to follow).
    - They are not young children / babies, so less likely to have neuro effects.
    - They have had some vaccines, including rotovirus and flumist, both live vaccines, without reactions.
    - Some of the diseases, like Hep A, can leave you with diarrhea, etc, for weeks.

    About my "type" of CFS: I have had CFS probably since adolescence, and I am 50 now. I don't recall anything virus related. My CFS is mostly fatigue (no sore throat, etc), sleep disorders, thyroid and adrenal problems. I always felt like the world was moving too fast for me. I also have significant treatment-resistant anxiety and major depression. I did have a lot of mercury fillings as a child, but I did a SPECT scan and they said I didn't have toxic brain. I had extra vaccines (though not as many as kids get now) because my dad was a diplomat and we traveled abroad. My brother had diabetes type 1 since age 3. My sister has CFS.

    We are going to Mexico, and Hep-A and typhoid are recommended. Also it would probably be recommended that we update our tetanus. My husband and I would theoretically do this, too.

    What is the current consensus, if there is one, on vaccinations for people with CFS, and for their children?

    Thanks,
    Nina
     
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  2. charles shepherd

    charles shepherd Senior Member

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    Hi Nina

    I attach some general information on vaccines and ME/CFS below

    I'm afraid there isn't usually a simple yes/no answer to questions about specific vaccines - it really depends on your state of health, why you are thinking of having a particular vaccine, and the risk of catching the infection you are going to be protected against

    On a personal basis, I have ME/CFS and would not go abroad to a country where there is a significant degree of risk from hepatitis A without this protection. So when I was planning a trip to India I had all the recommended vaccinations (making sure they were spaced out well in advance of my trip and not done when I was having any flu like symptoms). I did not have any problems with hepatitis A. And as you can see from the MEA survey below, this is not a vaccine that is regularly reported to cause problems for people with ME/CFS

    General information on vaccines and ME/CFS

    Anecdotal evidence indicates that a number of vaccinations are occasionally capable of either triggering ME/CFS, or causing an exacerbation of pre-existing symptoms, and the UK CMO Working Group report acknowledged (in section 3.3.2) that vaccinations can occasionally act as a trigger factor in the development of ME/CFS.

    The CMO report can be e-accessed using the document archive on the MEA website: www.meassociation.org.uk

    The link is biologically plausible but there hasn't been any really robust research carried out to investigate the role of vaccinations as immune system stressors in the causation of ME/CFS.

    Two fairly recent published reports of interest relate to an MHRA review of HPV vaccine (Cervarix) and ME/CFS >>

    http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON316330

    and two case reports re Swine Flu vaccine and ME/CFS:

    http://www.meassociation.org.uk/201...accination-bmj-rapid-responses-21-march-2014/

    I have a longstanding interest in the role of vaccinations in ME/CFS and my patient evidence on the subject, which is now quite substantial and includes a number of health workers who were vaccinated almost as a condition of employment, indicates that hepatitis B vaccine appears to play an unusual and significant role here

    This is supported by the results of the MEA website poll on the roll of vaccinations as trigger factors for ME/CFS (see below)

    The MEA has an information leaflet which summaries the research evidence relating to vaccinations and ME/CFS.

    Similar information is summarised and referenced on page 41 of the MEA purple booklet.

    MEA WEBSITE POLL:



    • If your ME/CFS was triggered by a vaccination, which vaccine was involved?
      • Hepatitis B (57%, 338 Votes)

      • Flu (9%, 51 Votes)

      • Other (7%, 41 Votes)

      • BCG (6%, 33 Votes)

      • Cannot remember (5%, 31 Votes)

      • Combination (5%, 27 Votes)

      • Tetanus (3%, 18 Votes)

      • Meningitis (3%, 17 Votes)

      • MMR (2%, 14 Votes)

      • Polio (2%, 10 Votes)

      • Hepatitis A (1%, 7 Votes)

      • Typhoid (0%, 4 Votes)


        Total Voters: 591
    Start Date: April 30, 2010 @ 3:20 pm
    End Date: June 2, 2010 @ 3:20 pm
     
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  3. 5150

    5150 Senior Member

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    This looks like the place where I tell what happened to me re. this year's flu vaccine.

    I made a poor decision. I decided to get the flu vaccine, first time in a while. I was swayed by a last second hard-sell by a doctor who knows nothing about ME. But I said "yes". This is without a doubt the last time for that.

    Two days after the vaccine, I got the flu. It was a fairly bad case; but luckily only lasted 7 days strong , and another 3 days weaker end to it. Reason: my immune system is compromised, as probably are most of ours. I guess I forgot that. It couldn't fight off exposure to the live vaccine because I am so run down, just a"bad cold" away from pneumonia.

    Therefore, I will say that it seems counter productive for anyone with CFS/ME willingly to put a strong-pathogen type of medicine, a live vaccine, up against a failing immune system. The result may be worse than you hoped.
     
    Last edited: Apr 11, 2016
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  4. charles shepherd

    charles shepherd Senior Member

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    MEA website poll (191 respondents in 2008) on outcome to having a flu jab:


    • 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)


        Total Voters: 191
    Start Date: November 13, 2008 @ 2:06 pm
    End Date: September 10, 2009 @ 2:06 pm
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I decided to break this past season's flu vaccine into quarters - I had the first quarter in Nov(?), but failed to follow up on the final three.
     
  6. nina_online

    nina_online

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    Thanks, everyone!

    Dr. Shepherd, thanks for taking the time and for including the research reports. I would like to read the CMO committee report, but I couldn't find it on the ME website. The search didn't bring it up. The link on the bottom right of the page for the archive requires you to pick a month (from Oct 2014 to present). What month was the report put out?
     
  7. barbc56

    barbc56 Senior Member

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    I don't think there's any evidence that this is true for everyone with me/cfs. Maybe @Jonathan Edwards can weigh in if he has the time.

    I would say that for most of us, getting the actual flu can cause all sorts of problems such as flares and crashes. This is true for other health issues as well. Yes, there are those who need to avoid vaccines. The following as report by the CDC has some helpful information. See below.

    http://www.cdc.gov/vaccines/vpd-vac/should-not-vacc.htm#mmr

    When I got my flu shot this year, I was asked if I had ever had guillain-barré syndrome. That was a first.

    @nina_online
    While the shot is not 100% effective, it does offer some protection. Not only that, if you are immune compromised it's even more important that people get vaccined to protect you. This is also true as far as other vaccinations. There might be a case for more flexibility for the flu shot. However anyone who works in a medical setting, teachers, etc. should be required to be vaccinated. For those who refuse to do this, maybe they're in the wrong profession.

    Some facts to keep in mind. Sometimes side effects reported after a vaccine are not beyond what would have been found to happen anyway.

    Some who get the flu after the vaccination may have been starting to get the flu. Vaccine timing is something relatively easy to remember and because of that it's easy to confuse cause and effect.

    Many reports are anecdotal which may lend itself to personal biases.

    I am NOT saying what others report is all in their head as the reality is that adverse events can and do happen. But, the incidence of adverse side effects in the general population is miniscule and my sympathies go out to anyone who has had this happened.

    If you have a compromised immune system, then it's even more important for others to be vaccinated. This is especially true for those with whom you have frequent contact.

    It's a matter, like many heath conditions of weighing the risks versus the benefits.

    But this needs to be determined by your doctor.
     
    Last edited: Apr 11, 2016
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  8. taniaaust1

    taniaaust1

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    at least one study into us has shown that one in twenty of us believe we actually got ME/CFS from being vaccinated. So with your sister also having ME/CFS, so obviously a family susceptibility, my advice would be not to do it without there being an extremely good reason to do so eg i got a tentus injection for my daughter when she was attacked by a dog.

    another issue with us, is that many of us have compromised immune systems so the vaccines may not even take anyway, this is the case for myself. i had the hep b shot so many times and it just wouldnt take (no antibodies were produced), then i ended up with me/cfs. i dont know if those hep b shots which didnt even work had something to do with this.

    a childrens risk of getting me/cfs when a mother has me/cfs, according to at least one well known me/cfs specialist would already be one in four according to his statistics of his ME/cfs patients and thier family

    another issue is, which many of us at phoenix rising have noticed, is that many of us with me/cfs have childen who have autism or aspergers . and there has also been that conversial thing about vaccinations possibly causing autism in some. some say now this has been disproven but ive seen this myself with a friends baby who was completely normal till he had a vaccination and after that, no more smiles etc ..within 24 hrs he had severe autism so there is no doubt in my mind that for some it is causing autism.
     
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  9. aaron_c

    aaron_c Senior Member

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    @nina_online : I don't envy your position.

    My own ME/CFS downward slide began within weeks of getting vaccinated faster than recommended (ie. the two parts of the vaccine were given four days apart instead of...two weeks or whatever.) Did this cause or contribute to my illness? I don't think it's possible for me to know.

    In terms of spacing vaccines out, though, even the anti-vaccine people may no longer be saying that. This explanation of a Japanese Study on the MMR vaccine and autism suggests that separating the M-M-and-R parts of the vaccine might not have done anything to help prevent autistic spectrum disorders.

    Weird, right?

    I should mention that in regards to the question of MMR vs separate M-M-and-R vaccines, I am not sure how well the Japan data can answer that.

    I am not taking a stand on vaccine safety--I don't know enough. But at first glance I give points to the anti-vax crowd for calling for more of a specific quality of research. I recently read a comment that went something like "one way to tell apart profit-driven pseudo-scientists from real ones is that real one's will call for more good quality research, while the pseudo-scientists will argue against this because their product cannot possibly cause harm."

    This situation is, of course, much more complicated than say, the fight against linking lung cancer and cigarettes.

    Also, after reading through site I linked above, it seems like at least some people who write pro-vaccine studies are being paid quite well by the pharmaceutical industry--I think they are saying Glaxo-Smith-Kline in the case of Prof. Rutter, who co-authored the Japanese study.

    Unhelpfuly, I think the only thing I can say with any confidence is: I also want to see some good quality research done on this topic.
     
    Last edited: Apr 12, 2016
  10. Valentijn

    Valentijn The Diabolic Logic

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    There's been a couple studies of normal flu vaccines in ME patients. Both showed objective abnormal immune reactions and corresponding reports of symptoms, though the vaccination was also effective.

    But basically there are immune side-effects occurring in ME patients which last at least a month (the end of the longer study), and they don't really know why it's happening, what it's doing, or when it will end.

    So personally I'd stay away from a flu vaccination. But the ones inoculating against very serious illnesses are probably worth it.
     
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  11. charles shepherd

    charles shepherd Senior Member

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    CMO report is in the Policies and Documents archive in the MEA website

    >> External Documents:

    http://www.meassociation.org.uk/how-you-can-help/about-the-mea/policies-and-documents/
     
  12. charles shepherd

    charles shepherd Senior Member

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    Flu vaccine:

    From the MEA purple booklet (vaccinations section):

    · 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 2012c). However, Prinsen et al (2012) found that humoral and cellular immune responses following influenza vaccination were comparable in ME/CFS patients and healthy controls. A short report in the BMJ (Lynch et al 2014) described how two health workers developed ME/CFS following influenza vaccination. However, as part of a registry surveillance of adverse reactions after mass vaccination in Norway, Magnus et al (2015) found no indication of increased risk of ME/CFS following influenza vaccination.
     
  13. CCC

    CCC Senior Member

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    When I first made the vaccination decision, my youngest was a baby. The epidemiological data convinced me to go along with it - both in terms of prevalence overall as well as the prevalence of serious complications.

    You need faith either way: faith to get you children vaccinated and faith not to.

    When my kids were preschool age, I looked around and noticed that some of those who claimed vaccines gave their kids autism all seemed to be talking about the preschool (3-5 year old) vaccination. A possible explanation is that there's something happening with child brain development at that age, and a does of whatever was in the vaccines was not a good thing for some kids.

    So I decided to delay it to reduce the risk of an outcome we didn't want. My eldest was vaccinated at 10 years old when she had her catch up; my youngest was 7.

    In hindsight, 7 years old was still too young. He now has CFS - and that catch-up vaccine is part of the triple insult to his system that could have triggered it.

    That said, we're all fully vaccinated for tetanus and a heap of other things.

    We don't do new vaccines because we don't want to be part of the population-level trial, so we said no to the cervical cancer one when it was offered at schools.
     
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Which studies were those, Valentijn? I am not familiar with this literature yet.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I would agree with barbc56. I don't think there is solid evidence for an immune defect in ME/CFS but if there was it would be a good reason to vaccinate if anything. A defective immune system is the main reason why we DO vaccinate people with diabetes or after spleen removal etc.
     
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  16. lansbergen

    lansbergen Senior Member

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    I do not take the influenza vaccination. My husband did and every year he got worse afterwoods.

    If I had young children I would let them vaccinated against what valentijn calls very serious illnesses.
     
  17. Valentijn

    Valentijn The Diabolic Logic

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  18. taniaaust1

    taniaaust1

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    sorry to hear that, my sister who has CFS due to my views on it and then her researching that, held off vaccination till her children were the same ages as yours and then broke under pressure of others and got them one lot of vaccinations.

    To her shock, all 3 of her children got bad reactions which seemed to be caused by the vaccination but fortunately not ME/CFS (one suddenly developed asthma, one then started getting vomiting at times with no known cause, her heatlh just wasnt the same .. the third child only had a local reaction and her arm swelled up heaps from the vaccination, I personally had never seen a child get such a bad swellling from a vaccine. So is it better to wait, who knows!

    Needless to say my sister never wants to give her children another vaccination.

    I turned into an anti vaccination person after my own child had a bad reaction and seemed to actually get from the vaccination like an strange version what the vaccination was meant to stop, worrying her doctors as they'd never seen anything like it so then didnt know what to do, they didnt even know if she was then contagious from the vaccine or not. My daughter may of been born with some issue with her immune system as she had something very rare 1:50,000 which peoples immune systems can usually fight.

    CFS can happen from vaccination no matter what age.. so waiting to do it later wont ward it off I dont think if one is prone to it through a vaccine. So vaccination then became my childrens own choices once they were old enough to make that choice themselves as older teens. I had no issue with my children making their own "informed" choice on it all if they choose to take the risk for the benefit it may bring.
     
    Last edited: Apr 12, 2016
  19. Mij

    Mij Senior Member

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    I'm not sure that all doctors understand though. I don't think I should have been vaccinated(several times) during my viral onset, my doctor didn't want to understand this until I told her -NO MORE. She wanted to give me the final 3rd Hep B shot and I refused.
     
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  20. barbc56

    barbc56 Senior Member

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    Yeah, we sometimes have to be our own advocates.

    That being said, I put more stock in what the medical community says. But I also look into the issues as much as possible. The medical community doesn't just pull these ideas out of a hat even though it may seem like that. Doctor's are not infallible and come with different personalities. The type of specialty may attract a certain personality. Not to generalize but take surgeons. Please!

    Those in the medical field that do admit they don't know everything, IMHO, are the cream of the crop.

    Sometimes I wonder if it's inevitable that something will eventually trigger our condition. I don't think we even know all the triggers so we can avoid them. That's a rather depressing theory. But it's just a theory. :(

    I need to go to bed. Maybe tomorrow will be a better day. Maybe not.

    Sigh.
     
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