HPV vaccination and risk of ME/CFS

hedgehog

hedgehog

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HPV vaccination and risk of CFS/ME: A nationwide register-based study from Norway, 2017, Feiring
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):
"The human papillomavirus (HPV) vaccination was previously implicated through anecdotal evidence and small series cases as a possible triggering cause of ME/CFS. However, a recent study titled “HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway” effectively weakens the assertion of a causal link between the development of ME/CFS following HPV vaccinations.

The study by Feiring et al. drew three major conclusions. First, that the quadrivalent HPV vaccine (protects against four strains of the virus) was not found to have an association with increased risk of ME/CFS. Second, that a patient’s medical history was tied to risk of ME/CFS. Specifically, they assessed various medical history factors, such as number of hospital contacts or certain classes of diagnoses (e.g. diseases of the circulatory system), and found evidence of a relationship. Finally, that medical history was also associated with lower uptake of the HPV vaccine.

The authors did note an increasing trend in number of ME/CFS cases in Norway during the study period (2009-2014). They underscore that this increase is not likely a result of the introduction of the HPV vaccine. They believe this uptick could be attributed to other factors, such as an increasing awareness of ME/CFS.

The researchers analyzed individual data systematically linked in the Norwegian Population Registry, the Norwegian Patient Registry, and the Norwegian Immunization Registry. The study also included a large population size of complete birth cohorts over the first six years quadrivalent HPV vaccine (protects against four strains of the virus) was offered through a national program to girls in the seventh grade.

These findings are demonstrative of a broader context related to vaccines. There are a range of chronic conditions that are naturally prevalent in the population that could potentially be reported as adverse events following an immunization whether a causal association exists or not. Studies investigating possible links to side effects are imperative for public safety because unsubstantiated safety concerns can damage confidence in a vaccine. These findings also echo results from a 2013 study of the bivalent HPV vaccine (protects against two strains of the virus) out of the United Kingdom. The combined evidence bolsters the current scientific understanding of HPV vaccine safety and the findings provide further evidence for ME/CFS researchers to weigh in their search for a triggering event of ME/CFS."
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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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hedgehog said:
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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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.
 
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.
 
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.
 
@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
 
hedgehog said:
@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.
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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.
 
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.
 
Woolie said:
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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Hope you are recovered from this and back to your normal level of function
 
Scarecrow said:
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.
Click to expand...
Definitely a hormonal link- too few studies done on this aspect ( vaguely remember a similar one also being Scandinavian)
 
Amw66 said:
Hope you are recovered from this and back to your normal level of function
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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.
 
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Woolie said:
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.
Click to expand...
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
 
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
 
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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