Poll: Viral vs. Non-Viral Onset and Contagious Relationship

[TigerLilea]

I am female and there aren't any family members with ME/CFS. I don't know if my onset was bacterial , viral, a combination of both, or the antibiotics that I was put on. I had two badly infected teeth that I wasn't aware of that resulted in me having a cold that lasted for six months that would not go away. I was put on Penicillin and three days later I was hit very suddenly with ME/CFS. And here I am 25 years later still waiting to get my life back.

 

[sorin]

It seems very unlikely to me the ME/CFS is an STD b/c if it was than the spouses and partners of those with ME would be the most likely to become infected (vs. someone who had a one-night stand) b/c the spouses/partners would have regular on-going sexual contact. Also if it was contagious by saliva than children or others in the home who share food and drinks would catch it.

With the variety of triggers (vaccines, mold & biotoxins, bacteria, viruses, amalgams/mercury) that all lead the to the same end-point, I don't see how it could be an STD.

Hi @Gingergrrl
Agree with what you said, but sometime ago I saw a statistics saying that 60% of people with CFS recognized they had in the past a risky sexual behavior (e.g contacts with prostitutes, even one contact or a few).
On the other hand I am not fully convinced that all triggers lead to the same unique end-point. What are the characteristics of this end-point? Because one CFS patient differs in symptoms by another one... And there are stages on CFS development as there are stages on HIV development. Seems the symptoms are continuously changing.

 

[sorin]

I am female and there aren't any family members with ME/CFS. I don't know if my onset was bacterial , viral, a combination of both, or the antibiotics that I was put on. I had two badly infected teeth that I wasn't aware of that resulted in me having a cold that lasted for six months that would not go away. I was put on Penicillin and three days later I was hit very suddenly with ME/CFS. And here I am 25 years later still waiting to get my life back.

Is it possible you got a intoxication with dental mold?

 

[SOC]

...sometime ago I saw a statistics saying that 60% of people with CFS recognized they had in the past a risky sexual behavior (e.g contacts with prostitutes, even one contact or a few).

I've never seen such a statistic and I see a lot of ME/CFS research. Can you provide a reference for this claim? 60% is a huge proportion of people with CFS reporting contact with prostitutes, especially since the majority of diagnosed ME/CFS patients are women.

 

[sorin]

I've never seen such a statistic and I see a lot of ME/CFS research. Can you provide a reference for this claim? 60% is a huge proportion of people with CFS reporting contact with prostitutes, especially since the majority of diagnosed ME/CFS patients are women.

I am afraid that I can not remember right now where I have read that statistic. It is some time since then. Could be a book or an article... However it would be great if CFS would not be STD and neither contagious in other ways.

 

[Gingergrrl]

Hi @Gingergrrl
Agree with what you said, but sometime ago I saw a statistics saying that 60% of people with CFS recognized they had in the past a risky sexual behavior (e.g contacts with prostitutes, even one contact or a few).
On the other hand I am not fully convinced that all triggers lead to the same unique end-point. What are the characteristics of this end-point? Because one CFS patient differs in symptoms by another one... And there are stages on CFS development as there are stages on HIV development. Seems the symptoms are continuously changing.

@sorin I have never seen any quote that 60% of people with CFS had contact with a prostitute or other risky sexual behavior. Since the majority of those with ME/CFS are women, even if you removed the CFS diagnosis, 60% of women in general are not sleeping with prostitutes so this is a bizarre statistic IMO. Not to mention all of the women who became ill as children (pre-sexual contact) and never had any sexual contact into adulthood due to their illness.

To clarify, I agree that not all triggers lead to the exact same end-point and no two people on this board had the exact sequence of triggers or exact set of symptoms. But we all have an ME/CFS type illness and most had some kind of pathogen trigger (from virus, bacteria, fungal/mold, parasite, vaccines, etc.) My point was that many triggers are leading to the same end-point. I don't think HIV is a good comparison b/c there is a blood test and biomarker to determine if someone has HIV and we know the modes of transmission.

 

[TigerLilea]

Is it possible you got a intoxication with dental mold?

I don't think so. I didn't see the dentist until a week after starting the antibiotics and by that time I had the start of ME/CFS.

 

[PatJ]

I voted: "I am male. My onset was viral. I DON'T have a genetic famly member with me/cfs or symptoms"

It's a guess. My history is odd: in 1991 I had an episode of Transverse Myelitis which "often develops in the setting of viral and bacterial infections" I had a decent recovery with no CFS type symptoms but I've wondered if this incident set the stage for events to come.

In 2003 and again in 2004 I had a sudden onset illness that left me with flu-like symptoms and dizzyness for a day, with my energy reduced by 50% permanently each time. Both episodes occurred at times of very high stress in my life. I went into gradual decline after 2004, and, due mainly to brain-fog, low energy, and PEM, could no longer work by mid 2006.

 

[PatJ]

I have never seen any quote that 60% of people with CFS had contact with a prostitute or other risky sexual behavior. Since the majority of those with ME/CFS are women, even if you removed the CFS diagnosis, 60% of women in general are not sleeping with prostitutes so this is a bizarre statistic IMO. Not to mention all of the women who became ill as children (pre-sexual contact) and never had any sexual contact into adulthood due to their illness.

Maybe that odd statistic comes from a study in a sub-population of CFS patients?

Risky sexual behavior isn't needed to get an STI. Even if someone uses "protection", has oral sex, or even without intercourse at all, it's possible to get an STI such as HPV or even syphillis because they are transmitted by skin-to-skin to contact of the genital areas. And children can get an STI without sexual contact because some STIs can be acquired in the womb or as the child passes through the birth canal. HIV can be passed through breast milk.

 

[Gingergrrl]

Maybe that odd statistic comes from a study in a sub-population of CFS patients?

It still seems very off to me b/c I have never heard of a study, even in a sub-group of CFS patients, in which they were looking at risky sexual behavior or sleeping with prostitutes, etc. It seems like most of the studies are so focused on psychological or psychiatric causes that if there were a study with an STD theory, it would be a purely medical study looking at viruses, bacteria or other pathogens and we would know of it.

Risky sexual behavior isn't needed to get an STI. Even if someone uses "protection", has oral sex, or even without intercourse at all, it's possible to get an STI such as HPV or even syphillis because they are transmitted by skin-to-skin to contact of the genital areas. And children can get an STI without sexual contact because some STIs can be acquired in the womb or as the child passes through the birth canal. HIV can be passed through breast milk.

I totally agree and of course someone could have sex one time in their entire life and get pregnant, get an STD, even get HIV but I think if this were the case with CFS, we would have a world wide epidemic. And I agree that children can be born with an STD from the womb or passed through breast milk but (other than new studies on Lyme disease) I have not heard of this with ME/CFS. But of course, I do not know this for a fact!

 

[picante]

Despite my efforts, it's difficult to come up with a poll to cover an illness that has so many potential factors contributing to it.

Yes, very difficult to come up with a poll that might give some answers to the question of contagion.

My answer could lead to a false conclusion, so perhaps I ought to change it. I voted female, viral onset, genetic family members with ME/CFS or symptoms.

My sister does not have ME/CFS, but she has some of my symptoms, which very likely are due to both of us having to drink water contaminated with perchlorate for 8 years when we were children. She may have Hashi's (as I do), but just hasn't gotten to the hypothyroid stage. Or it may be she has similar problems with her detoxification pathways.

My mother seems to have some of my methylation issues and has fatigue and overstimulation/overwhelm, but doesn't want to see a doctor.

Neither one has had a sudden metabolic crash with viral onset, as I did, at age 35, from EBV. And we were separated by distance at the time.

This doesn't mean that there isn't some unknown stealth virus or retrovirus that we got from our mother. Perhaps that is what predisposed my immune system to reactivate a latent virus.

 

[sorin]

I've never seen such a statistic and I see a lot of ME/CFS research. Can you provide a reference for this claim? 60% is a huge proportion of people with CFS reporting contact with prostitutes, especially since the majority of diagnosed ME/CFS patients are women.

Sleeping with prostitutes is just one example of "Risky sexual behavior". But there are also others, such as having unprotected sex with multiple partners, which also can be true for women.

 

[CantThink]

It would be interesting but I am not sure how it would explain why children develop ME before they have engaged (or had a chance to engage) in sexual behaviour.

 

[sorin]

It would be interesting but I am not sure how it would explain why children develop ME before they have engaged (or had a chance to engage) in sexual behaviour.

I hope not by transmitting the disease from mother to baby as it is the case with HIV.

 

[SOC]

Sleeping with prostitutes is just one example of "Risky sexual behavior". But there are also others, such as having unprotected sex with multiple partners, which also can be true for women.

You have absolutely NO evidence that ME/CFS is an STD or related to risky sexual behavior, and certainly not at the level of 60% of PWME reporting having engaged in risky sexual behavior at the time they became ill. Nor do the demographics of PWME support the claim that the ME/CFS population is a high-risk population for STDs. "I think I read it in a book somewhere once a long time ago" is not evidence.

You are spreading unfounded rumors, which at this point in time can only harm the patient population. If you had some solid evidence to support your claim, that would be a different matter, but you don't. Until you have solid evidence, stop spreading untruths about PWME. We get enough of that from the BPS school. We don't need it from other sources as well.

 

[Denise]

I hope not by transmitting the disease from mother to baby as it is the case with HIV.

But that wouldn't explain why only some children in a family get it (for instance only first-born), why their parents don't have it....

 

[picante]

I hope not by transmitting the disease from mother to baby as it is the case with HIV.

Judy Mikovits thought this was a possibility. What I gathered from reading Plague was that she did discover a gamma retrovirus in the patient blood samples, which remains unidentified because her research was destroyed. It was similar to the XMRV Silverman found that turned out to be a laboratory-created virus.

The book jumped around chronologically (like a jackrabbit), so it was difficult to see her overall message, but here is an interview that confirms the above: http://www.prohealth.com/library/showarticle.cfm?libid=18960

So, after three tries Silverman still couldn't get a full-length sequence of the virus we were looking at. That meant that what we sent him simply was not XMRV Silverman. [...]

We learned that anything we passed through animal tissues could make replication competent recombinant retroviruses in only ten days. All of our NIH research is based on mouse research. And those cell lines I worked with daily for more than 30 years have the potential to produce novel retroviruses.

So, here's the question: How many of these recombinant retroviruses are now in our environment and playing a role in all of these neuroimmune diseases?

So she thinks that the retrovirus she was looking at might be another laboratory artifact that has been spreading quietly through the human population, most of whom are able to silence its DNA through methylation.

 

[sorin]

Judy Mikovits thought this was a possibility. What I gathered from reading Plague was that she did discover a gamma retrovirus in the patient blood samples, which remains unidentified because her research was destroyed. It was similar to the XMRV Silverman found that turned out to be a laboratory-created virus.

The book jumped around chronologically (like a jackrabbit), so it was difficult to see her overall message, but here is an interview that confirms the above: http://www.prohealth.com/library/showarticle.cfm?libid=18960



So she thinks that the retrovirus she was looking at might be another laboratory artifact that has been spreading quietly through the human population, most of whom are able to silence its DNA through methylation.

Awful, because in my humble opinion of non-specialist, I thought the same but did not have the confirmation from a specialist. Seems we are hopeless if that is true... Still remains a question - why for HIV they (the scientific community leaders and decision makers and people who have the power ) make it publicly and elaborate a treatment and bio-marker and for CFS virus they hide it? Who destroyed Mikovits research?

 

[Denise]

@sorin there are several threads on PR about XMRV, Mikovits etc. and there are several points of view.

While it may be difficult for patients to read and parse material, it would be best if you delved into them.
Often that is the best way to form one's own conclusions.
It would also avoid sparking potentially volatile discussions involving differing viewpoints.

 

[picante]

it would be best if you delved into them.
Often that is the best way to form one's own conclusions.

That is always the best approach, of course. My conclusions tend to change often, as I learn more.

but here is an interview that confirms the above: http://www.prohealth.com/library/showarticle.cfm?libid=18960

To be clearer, I'm saying that the interview confirms that this is indeed her point of view.

I read the book out of curiosity, partly because I wasn't around when her results were published or during the heated debates when they were retracted. There are many studies that should be retracted. The fact that her work got a full retraction instead of a partial one tells me only that it was a hot potato. Yes, read read read!