HPV vaccination and risk of ME/CFS

This quickly became relevant again today, apparently I'm not too old as long as they think I'm a high risk case. I've had a second biopsy today to check for HPV mediated cell changes because although there are very few cell changes they are very resistant and just won't go away (at least so far, 2 years since it was discovered). Could be slow because of ME, or possibly Rituximab.

Besides the blood pressure fall and the doctors surprise at how long it took me to recover (that's ME for you!) it went alright. The gyno thinks I'll probably won't need surgery, that the cell changes will be gone by now. However she told me she will register me to get the HPV vaccine, as one infection won't make you immune and I could end up right back in her office. I'm not sure, but I would imagine the risk of persistent cell changes can only be greater for subsequent infections.

So, what to do? I already have ME, so not worried about that obviously, but vaccines are not necessarily the obvious choice anymore. I really don't want cancer, and I don't especially feel like getting a part of my cervix removed if I don't have to either. On the other hand, a relapse now could mean going back to being completely bedridden. It's not really a question, I think I need to get it. I might get worse but probably not for ever, and in any case having to do these checkups drains me so much I could as easily get worse from that too.

Thoughts or experiences to share, anyone?

(Edited for spelling)

 

These studies seem inconsistent.

An increase in CFS/ME but not GBS in Finland
https://www.sciencedirect.com/science/article/pii/S2405852116300696


An increase in GBS in France:
https://www.sciencedirect.com/science/article/pii/S0264410X17308071

These studies don't say there is no link, they just suggest vaccine related syndromes are rare, somewhere around 1 per hundreds of thousands of doses.

 

Be aware that

1. the vaccine is not effective for all strains
2. it needs boosted like a tetanus - ie not a once only

This is info that was not part of the school briefing pack

like tetanus it is designed to provoke a high response - so ensure that you are feeling as 100% as you can

I have a feeling that those who subsequently develop ME may have issues with mehtylation/ detox

 

Thank you, @Amw66 that is very useful to know.

I’ve written to the Norwegian ME Association to ask for their input as well, if they have any to give.

If I take it I suppose I will have to reserve a couple of months for staying in bed, making sure we have plenty of meals in the freezer, etc., just in case.

 

I’m more worried about having a reaction to the vaccine that will result in a relapse.

 

I think this study is spot-on.

There is no link between the HPV vaccine and ME/CFS.

HPV causes many fatalities in women (and men) of a sort that led to very ugly deaths.

Anti-vax movements that operate from anti-scientific positions will depress the number of people getting vaccines, and that will drive up unnecessary diseases and deaths.

Better to stand with good science.

Bill

 

I agree, I’m not worried about the safety of the vaccine (I was initially bummed out that I was too old to get it).

Regardless, PwME report sometimes having very strong reactions to ANY kind of vaccine, potentially making their ME worse by taking up precious energy much in the same way a viral infection will.

So vaccine/no vaccine for adults with ME is not as easy a question as for healthy people.

My probability of becoming worse from the vaccine is higher than developing cervical cancer. However, cancer of course is a much worse outcome and potentially deadly, which I think makes it worth getting the vaccine regardless of the risk to my health.

I’m already housebound and intermittently bedbound, so a worsening would severely impact my ability to take care of myself. I’ll need to plan carefully for that possibility.

 

I can't be sure what additional risks vaccines present to people with ME/CFS. It does seem clear to me (even via personal experience) that things that don't have big consequences for healthy people can affect us (and me) very badly.

But a concern remains that the anti-vax movement in the general healthy population places those who are ill (including, but not exclusively, our community) at greater risks if healthy people don't vaccinate due to unfounded fears and the "herd immunity" is weakened.

With ME/CFS doing anything that might bring oneself harm is a reasonable fear or concern. I get that completely.

Bill

 

I’m in a stable monogamous relationship, so in that case I should be safe from new strains (unless they can be dormant for years). I’m 10 years too old to have been in the school program, and they only started vaccinating boys last year so neither of us have it. My mom just told me she suggested getting it years ago but that I was dismissive. Should have done it!

The gyno said something about me needing the vaccine because we couldn’t know if my partner is a carrier for more strains (I think, I was crawling on the floor at the time, trying to get my shoes on without fainting). In which case I guess they can be dormant and show up at any time?

I’ll probably be fine with taking it, especially if I prepare not to be I have a cold virus that has proven very resistant too though, so something is obviously up with my immune response. Then there’s the abnormally strong reaction to chiropractic treatment that made me relapse bad... I’ll make sure it really is the best option, first.

ETA: oh! Maybe I can get my partner to get the vaccine instead! Would that work?

 

It may be true that the HPV vaccine does not trigger or increase the risk of ME/CFS; however, that does not rule out the possibility the vaccine may trigger some other illness that is similar to ME/CFS.

Dr Osamu Hotta found that an ME/CFS-like illness appearing after HPV vaccination was associated with chronic nasopharynx inflammation (nasopharyngitis) — see this thread.

Timecode 10:30 of Dr Hotta's video shows the extreme limb weakness of a young girl who developed a ME/CFS-like illness after HPV vaccination. You can see that this wheelchair-bound girl barely has the strength to lift her leg by a few centimeters.

To the casual observer that weakness might look like ME/CFS, but in fact ME/CFS patients do not usually have that kind of extreme muscle weakness; ME/CFS patients can usually use their muscles without much problem, but may pay for it the next day in terms of post-exertional malaise (PEM).

So whatever illness this girl did have, it does not appear to be true ME/CFS (in as far as one can tell from looking at the video). At timecode 12:33, you can see that after 46 days of nasopharyngitis treatment, she apparently regained her muscular strength.

 

Like many of the boys we know, my son (age 13) has had the Gardasil 9 series of shots. He has had no ill effects (and does not have ME/CFS).

We're glad to know this vaccine has reduced the risks that he might contract or spread HPV and that any future partners would not face a risk of cervical cancer from him from the protected strains.

I'm sorry to learn that your daughter has ME. I was unaware. I can deal with my own illness, knowing my kid was suffering would be far harder to take.

All my best wishes to you.

Bill

 

@Hutan I'm embarrassed to realize that I was unaware you have two children with ME/CFS.

I hope your children continue to improve.

I wish I had words that would offer comfort. Nothing would be harder for me than having a child suffer with this thing.

I'm deeply sorry to learn this news.

Warmest regards,

Bill

 

Possibly. Or she just wasn’t sure if I had a partner atm. Or she said something else, to be honest I wasn’t really listening, all my focus was on getting the last shoe on sounds like we could both benefit from getting the vaccine, regardless!

 

This popped up on my Twitter feed...

https://twitter.com/user/status/1002476903226396672


The antivax undercurrent of such a question makes me feel very uncomfortable.

 

I was told by my immunologist, vaccine alright if I have stabilized, and then a vaccine without adjuvants and no living parts (sorry, english). No multiple vaccination.

 

Thanks @Inara that’ helpful doubt they’ll give me much in the way of options when it comes to the kind of vaccine they offer, but it won’t hurt to ask! No way around getting multiple ones I’m afraid, but by the time I need a top-up let’s hope we’re all cured!

 

In English, we would say a "live" vaccine.