HPV vaccination and risk of ME/CFS

Esther12 said:
I wanted the HPV vaccine but was told I was too old.
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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)
 
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andypants said:
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 fell 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?
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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.
 
Snow Leopard said:
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.
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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
 
Bill said:
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
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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.
 
andypants said:
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.
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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
 
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My understanding is that there is a large number of HPV strains (around 150), some of which are linked to subsequent cancer and some of which are not. I think the Gardasil vaccine protects against some problematic strains (Gardasil 9 for example protects against 9 strains). If someone already is infected with an HPV strain, the vaccine won't get rid of that particular infection.

HPV is sexually transmitted. So, if you are not having sex, or are in a monogamous relationship (and the partner is also monogamous), there is essentially no risk of exposure to any new strains. If any new partner had had the vaccine prior to becoming sexually active (in some countries boys are being vaccinated), then that would also protect you.

For what it is worth, my daughter was vaccinated in the years when she had mild ME. She suffered no ill effects at all from the 3 injections of the Gardasil vaccine. We did choose times when she could rest afterwards and when the consequences of any reaction were not so high (e.g. not before exams).
 
Hutan said:
HPV is sexually transmitted. So, if you are not having sex, or are in a monogamous relationship (and the partner is also monogamous), there is essentially no risk of exposure to any new strains. If any new partner had had the vaccine prior to becoming sexually active (in some countries boys are being vaccinated), then that would also protect you.
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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! :p

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?
 
andypants said:
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?
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I suppose it's possible that your partner may not yet have passed on some strains of HPV to you. From the literature it seems that, although transmission is generally pretty efficient, there isn't yet really good information about that, especially for particular strains. And perhaps your gynaecologist is taking into account the fact that many relationships aren't, or don't stay, strictly monogamous?
 
hedgehog said:
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."
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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.
 
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Hutan said:
My understanding is that there is a large number of HPV strains (around 150), some of which are linked to subsequent cancer and some of which are not. I think the Gardasil vaccine protects against some problematic strains (Gardasil 9 for example protects against 9 strains). If someone already is infected with an HPV strain, the vaccine won't get rid of that particular infection.

HPV is sexually transmitted. So, if you are not having sex, or are in a monogamous relationship (and the partner is also monogamous), there is essentially no risk of exposure to any new strains. If any new partner had had the vaccine prior to becoming sexually active (in some countries boys are being vaccinated), then that would also protect you.

For what it is worth, my daughter was vaccinated in the years when she had mild ME. She suffered no ill effects at all from the 3 injections of the Gardasil vaccine. We did choose times when she could rest afterwards and when the consequences of any reaction were not so high (e.g. not before exams).
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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
 
Thanks @Bill. After about two years of ME/CFS, my daughter recovered to close to full health - maybe the Gardasil vaccine cured her ;). In fact, I learned about HPV recently from my daughter who researched it for a public health paper at university. (My son is still ill and yes, having a child chronically ill and significantly disabled with an illness that the medical profession would prefer to ignore is a sad and frustrating experience. We are lucky that my son too is starting to improve.)

HPV causes some nasty cancers in men too, oral cancer for example, and rates of the various problems caused by HPV are already declining in countries with public vaccination programmes. So yes, the Gardasil vaccine seems to be a great thing for both boys and girls; overall, it will reduce a great deal of suffering.
 
Hutan said:
Thanks @Bill. After about two years of ME/CFS, my daughter recovered to close to full health - maybe the Gardasil vaccine cured her ;). In fact, I learned about HPV recently from my daughter who researched it for a public health paper at university. (My son is still ill and yes, having a child chronically ill and significantly disabled with an illness that the medical profession would prefer to ignore is a sad and frustrating experience. We are lucky that my son too is starting to improve.)

HPV causes some nasty cancers in men too, oral cancer for example, and rates of the various problems caused by HPV are already declining in countries with public vaccination programmes. So yes, the Gardasil vaccine seems to be a great thing for both boys and girls; overall, it will reduce a great deal of suffering.
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@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
 
Hutan said:
I suppose it's possible that your partner may not yet have passed on some strains of HPV to you. From the literature it seems that, although transmission is generally pretty efficient, there isn't yet really good information about that, especially for particular strains. And perhaps your gynaecologist is taking into account the fact that many relationships aren't, or don't stay, strictly monogamous?
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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:unsure: sounds like we could both benefit from getting the vaccine, regardless!
 
Inara said:
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.
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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!:emoji_fingers_crossed:
 
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