HPV vaccination and risk of ME/CFS

I wish there was some way to talk about how vaccines could possibly trigger health problems without there being an "antivax" undercurrent. I've got "no horse in this race" and genuinely interested in how and if this could happen.

We are seeing in local ME support groups an increasing number of either parents contacting us because of their daughters developing symptoms or the daughters themselves. We need to know about what is happening for this reason.

 

It's a big problem, because it is so hard to remain unaffected by all the biases. Many people come forward because of the expectation of an effect, even if it isn't true. Once people have an idea that something causes something else, it is almost impossible to shift. There are just so many things going on at puberty - temporal bias will attach meaning to just about anything. But it also works that way for the stigma attached to ME/CFS. I'm pretty convinced that the reason my former colleagues won't talk to me is because they think I'm now a raving antivaxxer for taking up the cause. That hurts. And I really don't know what to do about it.

 

Also, isn't the HPV vaccine is given around the time when there appears to be a natural increase in onset of PoTS and CFS? That could lead to it looking like an association, even if those who do not receive the vaccine are not more likely to come down with symptoms.

The politics can be difficult, as it's important people's concerns are listened to and properly addressed, but the harmful history of quackery and an ant-vaccine movement can be a problem.

 

With "multiple ones" getting vaccined with several different germs was meant.

If there are options to minimize the danger of worsening I'd choose them. It is possible you have to pay for the vaccine yourself though...Still I would try and not gamble.

Thank you @Woolie! I really hope I will remember "live vaccine".

 

I am not so sure if it's about "anti-vacciners" itself. I share @ukxmrv's thoughts. The idea behind vaccination is good, but probably its implementation must be checked and/or reconsidered. If I remember correctly one point of critique were adjuvants. It seems these can lead to an unexpectedly stark reaction of the immune system in some. There are reports that vaccination led to auto-immune diseases. I think we should understand if and what problems/dangers can occurr due to vaccination.

It was interesting to hear my immunologist saying I shouldn't use vaccines with adjuvants. I am sure I will have to demand such vaccines when the time comes. Most vaccines contain adjuvants.

I don't think it is reasonable to dismiss concerns about vaccination safety as "dumb anti-vacciners". We need knowledge and discussion. Until we know more, people need to know the pros and cons. There are definitely people who became sick after vaccination. This needs to be understood.
My impression was research about vaccination is scarce. That shouldn't be so. I view it as an important topic.

Best wishes for you @andypants! I am sure it will be good.

 

Is there an antivax undercurrant? Genuine question. I really don't know if Dr Malcom Hooper is anti vax or has ever said anything else that sounds antivax.

Generally speaking I think it's a good question to ask as adverse reactions have come up in the newspapers and elsewhere, at least in the UK, and there's all sorts online. Concerned people could do with good information and I think Beth Unger's comment is useful.

eta - I should have refreshed the page befroe posting - I'm behind the conversation, sorry

 

I think there is a problem, perhaps particularly in the UK, with medically qualified advocates for ME over-egging the evidence for viruses, vaccines, mitochondria or whatever. The early critiques of the PACE trial were heavily overlain with arguments about how the condition could not be psychological because of all the evidence ...bla bla ... viruses... metabolism .... bla bla. Most medical colleagues would have as a result ignored these critiques as rants from people with bees in their bonnets. I would.

I would not be surprised if Carol Monaghan had not got the idea that it was probably all viruses or mitochondria or whatever. And I think that gets in the way of persuading the medical profession as a whole that this is an ordinary seriously disabling illness about which we currently know almost nothing - of which their are lots. It is hard to know what patients can do about this themselves but I would like to think that academics and medics might be persuaded to move to a less inflammatory approach - simply to stop this 'raving antivaxxer' type reaction.

 

As long as it is good science.

I have concerns when adverse events are not studied in case it gives a foothold to anti vaxxers.
I was with my daughter in hospital when a young girl was brought in having collapsed 10 minutes after Gardisal vaccination with a seizure which took hours to bring under control. She went on to have a seizure disorder for at least several years after. Was it caused by the vaccination or was it coincidence? Probably coincidence but the fact is not only do we not know, but a link was never recorded, reported or investigated. The treating doctors decided it had nothing to do with the vaccination and told the girl’s mother they would not be reporting it. When that happens over and over then the figures for adverse events cannot be trusted.

Yes I agree

 

I think that was probably fair enough. It takes hours for vaccine components to get to the immune system. Even the toxins in old fashioned typhoid vaccine took more than 10 minutes to get into the circulation. Faints with seizures are common enough following injections but they are due to autonomic reactions to having an injection, not what is in the injection.

 

The tone of the question seemed to suggest it:

"vaccine *damage* *leading to* (ie, causing) ME/CFS"

rather than, say, asking whether ME causes people to be more sensitive to vaccines (such as HPV vaccine).

 

Is this really true though? Vaccination rates have been increasing steadily for decades at a more or less constant rate in most countries. The media claims of outbreaks are overblown - infection rates go up and down due to stochastic factors and these differences over given periods don't have simple causes. The exception is the major trends and the major trend is down compared to 20-30 years ago.

The only aberration was the MMR vaccine rate in the UK which had a bit of a dip in the early-mid 2000s, but that was completely reversed by the late 2000s.

I think a lot of the ranting about anti-vax movements on the internet is distracting from the bigger issues limiting vaccination rates (poor access, or unaffordable or poor quality health care, poor relationships with doctors etc).

Most ME or CFS cases are not due to vaccines but statistically we cannot rule out rare cases because the studies are not large enough or not well controlled enough (for population based studies which rely on diagnosis which can have various biases). There is good evidence that vaccines can cause GBS in rare cases and a substantial number (30-40%) of GBS cases result in a Chronic-Fatigue-like Syndrome, even when neurological function seems to be restored.

 

I had the same experience with sudden onset GBS with symptoms starting right after a vaccination (and I did not experience, nor test positive to any sort of infection at that time!) - no one wants to take responsibility due to all the politics involved. The thing is that acute flacid paralysis is MANDATORY to be reported according to the World Health Organisation for children under 15 - in my case I was over 15 so suddenly due to that technicality, doctors didn't want to take responsibility.

 

I think this is a major issue. The vaccine probably does trigger some cases of ME, and probably prevents some cases of ME. The issue is where the balance lies. I am not sure we are in a place where this can be studied yet, we need a reliable diagnostic test for ME first.

If ME is on the rise in a population before vaccination its very hard to deduce anything.

The other issue is population incidence and personal risk. Studies like this are about populations. It tells you nothing about individual cases. As has been pointed out, at risk individuals might just get ME via some other method.

It depends on the pathogen and the vaccine, but I suspect that the risk factors for ME with vaccines in general might be that vaccination lowers ME rates. There are important exceptions however. For example, I think we need a good epidemiological study into polio vaccine and ME. We also have some limited evidence that Hep B vaccine might risk inducing ME, but it might just be that it exacerbates ME or the risk factors. In all cases we just do not have the data we need.

This point about exacerbation risk is another thing. Sometimes a factor is not causal, but increases risk in combination with other factors. If a study is not designed to identify this then the wrong conclusions can be drawn.

I have kept this reply general as I have not read the study in question. I am not well enough to read another study right now. I have several studies I really need to read before this one, too.

 

Vaccination may be part of risk - perhaps if body is already in inflammatory mode.

Detox issues may also increase susceptibility with use of adjuvant

From the 5 people i know with ME , 4 developed the illness after vaccinations. (3 tetanus, 1 multiple vaccinations to travel abroad)

From parents forums there are a number of girls affected by HPV vaccine, though POTs seens more common than ME.

I don' t think it is s cause initself, i do think vaccinarions may play a role.

The HPV issue has a lot to do with Merck's record ing of harms procedures, and rush to market

 

Seizures lasting hours are not common following injections, nor does the autonomic reaction explain an ongoing seizure disorder. Again it was probably coincidence, but I don’t believe it was the doctors’ place to decide that. If faints and seizures are more common following some particular injections than others that cannot be studied if proper records are not kept.

 

I think the vaccine makers and researchers accept that there is a rare number of people who are adversely affected by a vaccination, developing life changing conditions thereafter, including ME/CFS and GBS. Because they do not know the underlying reason and cannot tell in advance who these people will be there are compensation strategies in place for these events. It’s about balancing risk versus benefit both for individuals and society as a whole. The rare possibility is not a reason to not be vaccinated - the risks from contracting illnesses the vaccines are designed to prevent are far greater, but it is also necessary to acknowledge those who are affected in this way.

 

I think there should be a questionnaire given to each patient to fill out after a vaccination and any reactions to the vaccine recorded on the questionnaire and returned after a few weeks or month? We might get a better picture of what is happening symptom wise, whether mild, severe or no reaction.

I've always been pro-vaccination but since getting sick with ME I have had to be more aware of the risks.

 

Or a follow-up call by a nurse to record how patients tolerated the vaccine.

 

Which is the justification for the compensation scheme that they use in the US, but such a scheme is often absent in many countries including Australia (thus making mandatory vaccination or coercion unethical in Australia).