What Is The Consensus On STD's w/ ME/CFS?

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Hi everyone, I've recently reached the level of improvement to be sexually active again. (26M) I have some concerns/questions before hopping back in the sack again.

I'd really like to become sexually active again but I fear if on the small chance I were to pick up an STD it could retrigger my ME/CFS and my life would come crashing down again (a scary prospect).

We know ME/CFS is typically caused by a viral infection and there are plenty of stories of ppl that have recovered and relapsed badly by picking up another infection somehow.

HPV and Herpes 1/2 are the most common STD's, both are viral infections, and condoms can't protect you against them since they are skin based.

I feel like the safest bet is to only sleep with partners that are fully monogamous to you and have been tested for STD's... but gosh that's so unromantic and square ... but my worst fear is getting worse again.

So I guess Id like to know, Am I right to be this cautious? Is this a valid point OR am I overblowing this and should just go enjoy my improved health?

What is the consensus in being sexually active with ME/CFS?
 

Hip

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In terms of infections that may re-trigger ME/CFS, it's not STDs that you have to worry about (as these are not really linked to ME/CFS), it's viral infections that you may pick up from kissing. All the viruses linked to ME/CFS are transmitted by saliva: EBV, cytomegalovirus, coxsackievirus B1 to B6, the echoviruses, and parvovirus B19.

I caught the virus which triggered by ME/CFS by kissing on a date, without any sex involved.


Interestingly, Prof Paul Ewald has championed the view that most common chronic diseases — from diabetes to heart diseases to neurological illnesses — are most likely caused by the pathogens that circulate from one person to the next. So for example, the Epstein-Barr virus that you probably first picked up in your teens or 20s from kissing may, 20 years down the line, trigger multiple sclerosis, or trigger one of the other illnesses that are linked to EBV.

Ewald suggests if you want to try to avoid chronic disease later in life, it may be an idea to limit your amorous relations to people that you think are going to lead to meaningful relationships (as opposed to jumping into bed and kissing everyone just for fun). Again it is not so much the sex, but the kissing which spreads the pathogens linked to chronic diseases.

Of course, this is not a mainstream medicine view. Most doctors and medical researchers do not have much interest or understanding in the link between pathogens and chronic diseases. And definitive evidence that pathogens do cause all our chronic diseases has not yet been forthcoming, although there is a lot of suggestive evidence, as pathogenic infections have been found in many chronic diseases. Eg, Alzheimer's has been linked to herpes simplex.

So if you ask your doctor, they will probably not subscribe to these ideas. But I tend to think that Ewald's ideas of chronic disease etiology are probably right. However, you don't want to start getting too paranoid about pathogens, and then forget to enjoy life.

Ultimately we need to develop a wider range of vaccines to protect us from all disease-linked pathogens. I think that would dramatically reduce the incidence of chronic disease. But this unfortunately will not happen until we obtain definitive proof that these pathogens cause the diseases they are linked to, and it is very difficult to get this proof.
 
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Hi, @CFSGangster,

I look forward to hearing what others have to say on this topic. Perhaps your thread will get more traction over the weekend.

You mentioned that you are a 26 year old male, and that one of your concerns is contracting HPV.

Have you considered getting vaccinated against HPV? If so, you may have a limited time to do so. I believe 26 is the cut off age for vaccination, but the guidelines may have changed, and/or probably differ between men and women.

Of course, getting vaccinated carries it's own set of risks for those of us with severe immune dysfunction. I can only handle the flu shot. ;-)

If you have a good rapport with you doctor, maybe he/she could weigh in?
 
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In terms of infections that may re-trigger ME/CFS, it's not STDs that you have to worry about (as these are not really linked to ME/CFS), it's viral infections that you may pick up from kissing. All the viruses linked to ME/CFS are transmitted by saliva: EBV, cytomegalovirus, coxsackievirus B1 to B6, the echoviruses, and parvovirus B19.

I caught the virus which triggered by ME/CFS by kissing on a date, without any sex involved.
Hi Hip, thanks for weighing in here. Those are some good points you bring up and yes I can see how kissing could be even more dangerous than sex (however I never thought about it that way until now).

I do get your point that the viruses you mention are the ones linked to triggering the onset of ME/CFS but my line of thinking was more so that getting ANY major viral infection could wreak enough havoc on our compromised immune systems to trigger a relapse (the straw that broke the camels back if you will).

What are your thoughts here? Or do you think the virus would just play out like it does with normal ppl?

Interestingly, Prof Paul Ewald has championed the view that most common chronic diseases — from diabetes to heart diseases to neurological illnesses — are most likely caused by the pathogens that circulate from one person to the next. So for example, the Epstein-Barr virus that you probably first picked up in your teens or 20s from kissing may, 20 years down the line, trigger multiple sclerosis, or trigger one of the other illnesses that are linked to EBV.
This is very interesting theory and work by this gentlemen. I've never come across this but intriguing. I do 100% that ME/CFS is caused by pathogens circulating but I have a bit of a hard time thinking that is the root cause for other major chronic disease such as MS, Heart disease, etc.. If that were the case would not there have been epidemics of chronic disease as their are today back 200 years ago and before modern medicine? Whereas in the past 30 years there has been a huge spike in chronic illnesses? (though maybe were more sexually promiscuous these days XD... rolls eyes)

I personally tend to follow the line of thinking of genetics being triggered by environmental factors that mismatch our genetic code. That said I'm open minded to Prof Ewald's theory and work and wouldn't discount it, its just new to me.

Why does his theory seem to ring true to you? I'd like to hear where you're coming from.

Hi, @CFSGangster,
Hi @Zebra, I saw your reply to my welcome thread, thanks for welcoming me :)

Have you considered getting vaccinated against HPV? If so, you may have a limited time to do so. I believe 26 is the cut off age for vaccination, but the guidelines may have changed, and/or probably differ between men and women.
Yeah its a thought, though the vaccination just inoculates you against the strains that cause warts and cancer, so you're still left vulnerable to other strains of the virus (there's over 100 strains). So I figure that eh maybe thats more trouble than its worth.

There's actually a cool product my boss recommended called Divine-9 Lubricant whic h is a sex lube with Carageean in it that suppossedly prevents HPV from spreading. There's a reasonable level of in vitro and clinical trials but not enough to hang your hat on.... I still bought a bottle haha.

Would be pretty cool if they got something like that FDA approved tho!
 

Hip

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but my line of thinking was more so that getting ANY major viral infection could wreak enough havoc on our compromised immune systems to trigger a relapse (the straw that broke the camels back if you will).

What are your thoughts here?
It's only certain viruses that have been linked to ME/CFS, and so those I think would be the major concern. Generally the viruses linked to ME/CFS are capable of hanging around in the body long-term as a chronic intracellular infection. ME/CFS is not linked to any viruses which are cleared from the body by the immune system (like rhinovirus, which is completely cleared from the body — nobody gets ME/CFS from catching a cold).

So for example ME/CFS is strongly linked to coxsackievirus B (which forms chronic infections), but is not linked at all to coxsackievirus A (which does not form chronic infection).

Norovirus (winter vomiting bug) for example will make you as sick as hell, and you get these major norovirus outbreaks on cruise ships, but you never hear of anyone getting ME/CFS after a norovirus infection, and there is nothing in the medical literature to suggest norovirus is in any way linked to ME/CFS.

So there are many infections that are not associated with ME/CFS.



but I have a bit of a hard time thinking that is the root cause for other major chronic disease such as MS, Heart disease, etc.. If that were the case would not there have been epidemics of chronic disease as their are today back 200 years ago and before modern medicine? Whereas in the past 30 years there has been a huge spike in chronic illnesses? (though maybe were more sexually promiscuous these days XD... rolls eyes)
The trouble with trying to scientifically link these chronic diseases to their associated pathogens is that they do not appear immediately after the pathogen is caught. It might take 10 or 20 years or more before a pathogen you caught precipitates a chronic disease.

Because of this time delay, you do not get noticeable epidemic outbreaks like you do with ME/CFS. ME/CFS is quite a unique chronic disease in that it can be immediately precipitated within days of infection.

But as you say, some chronic illnesses do seem to be on the up, and this may be due to increased urbanization, which places millions of human beings in close proximity, therefore more likely to transmit pathogens to each other. Also as you say, since the sexual liberation movement of the 1960s, arguably people are experimenting with more amorous relationships than they did in the more conservative past.


I became interested in Ewald's ideas after the virus which caused my ME/CFS (which was Coxsackie B4 virus) also spread to over 30 friends and family, and caused a horrifying outbreak of various diseases, both physical and mental, including 4 sudden heart attacks with myocarditis in previously completely healthy people, as well as two ruptured bowels requiring emergency surgery, and several cases of severe generalized anxiety disorder.

I detail the all the illnesses that my CVB4 caused in my friends and family in this post.
 
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It's only certain viruses that have been linked to ME/CFS, and so those I think would be the major concern. Generally the viruses linked to ME/CFS are capable of hanging around in the body long-term as a chronic intracellular infection. ME/CFS is not linked to any viruses which are cleared from the body by the immune system (like rhinovirus, which is completely cleared from the body — nobody gets ME/CFS from catching a cold).

So for example ME/CFS is strongly linked to coxsackievirus B (which forms chronic infections), but is not linked at all to coxsackievirus A (which does not form chronic infection).
Thats very interesting the connection of virus's that are cleared such as common cold Rhinovirus and the ones that hang around pose issues. I definitely agree those viruses that are showed to be connected are of greatest concern but I know Dr. Ron Davis seems to be under the impression that potentially any virus could cause symptoms to increase/onset.

Question here though, as you mentioned limiting the amount of people you are exposed to their saliva (i.e. kissing) as that makes sense to me... Can you test for these associated viruses as you would test for STD's before becoming intimate with someone? Is it just the risk of having their saliva in your mouth as the entry point or can you not have their saliva on your body as well?

I became interested in Ewald's ideas after the virus which caused my ME/CFS (which was Coxsackie B4 virus) also spread to over 30 friends and family, and caused a horrifying outbreak of various diseases, both physical and mental, including 4 sudden heart attacks with myocarditis in previously completely healthy people, as well as two ruptured bowels requiring emergency surgery, and several cases of severe generalized anxiety disorder.

I detail the all the illnesses that my CVB4 caused in my friends and family in this post.
Thats a very crazy experience you witnessed with that outbreak after your virus. Amazing how something so infinitely small can wreak so much havoc.

Its interesting work and as you mention poses a lot of challenges to study. Thanks for sharing all that, very interesting stuff.
 

zzz

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I do get your point that the viruses you mention are the ones linked to triggering the onset of ME/CFS but my line of thinking was more so that getting ANY major viral infection could wreak enough havoc on our compromised immune systems to trigger a relapse (the straw that broke the camels back if you will).
This would be my biggest concern as well. Unfortunately, there are few if any studies on the effects of STDs on people with ME/CFS. But I think you're right when you say, "ANY major viral infection could wreak enough havoc on our compromised immune systems to trigger a relapse," and the herpes viruses (and HIV) are especially nasty in that once you've got them, you've got them for life. So I would think that "better safe than sorry" would be the guideline here.
So I guess Id like to know, Am I right to be this cautious?
Personally, I think so. I know I would be.
 

Hip

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Question here though, as you mentioned limiting the amount of people you are exposed to their saliva (i.e. kissing) as that makes sense to me... Can you test for these associated viruses as you would test for STD's before becoming intimate with someone?
Yes, in principle you can get commercial tests for some but not all of these pathogens which are transmitted via saliva, but there are dozens of them, so it would cost you a small fortune to test for each one. And anyway, most adults will already be infected with a variety of pathogens, so by testing someone you will only find out that they have their own subset of these viruses in their body.



Is it just the risk of having their saliva in your mouth as the entry point or can you not have their saliva on your body as well?
It's oral contact with saliva, nasal secretions or fecal material that transmits these viruses. They cannot be contracted via saliva on the skin. But viruses like herpes simplex or human papilloma virus are transmitted by skin-to-skin contact.