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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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XMRV and Transmission: The Big Question

Discussion in 'XMRV Testing, Treatment and Transmission' started by Aftermath, Oct 12, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

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    Wait, wha? :confused:
  2. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Well, are you aware that one can basically have children despite being HIV+. I'm not sure if I would do it, because I dont know all the numbers and have no reason to really find out (being HIV-). Who knows if XMRV vis-a-vis having kids will come out anywhere similar to what the case is with HIV. But basically, here are the pieces on the chessboard.

    HIV is mostly transmitted in birth itself (as opposed to gestation), and through breastmilk. So you simply dont use breastmilk. Giving birth, parturition, is a little harder to dodge but basically one takes a combo of drugs and gets the viral loads basically undetectable, viola, the risk is way down. I'm not confident in my memory on this, but I think the total risk of transmission goes from 30% to 2%.

    So what if the baby does get HIV? Thats what I'm not certain of -- there could be implications of taking the drugs at a young age, if that is needed. And there could be a somewhat shortened lifespan, which at a 2% risk (the one pertaining to HIV) is not a huge deal in my mind.

    Whatever the route of horizontal transmission, which I certainly hope is HIV-like since it beats the other possibilities, one might be able to move the risk to ones children down farther with a vaccine. However, Coffin said the FLV vaccine was only partially effective. I'm not sure if any other gammaretroviral vaccines have ever been developed (possibly for farm animals, whatever).

    Anyway, I aint in the greatest or most attentive mood, so I'll continue later in another post.
  3. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    The number of people posting XMRV results here means nothing for the prevalence of CFS. We know that the point prev is probably around 0.3-0.4% in the USA for the surveillance definition. The true prev must be higher, probably 0.6% or more -- if you lump in fibromyalgia I would suspect 1.00% or more.
  4. anne_likes_red

    anne_likes_red Senior Member

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    Pardon?

    Oh wait...you're being....

    !!!
  5. starcycle

    starcycle Guest

    Please do not even start mentioning vaccines. Vaccines are sacred cows to the medical establishment and most of the population. There would be no quicker way to discredit ourselves than to start trying to link CFS to vaccines, whether it was true or not.

    It shouldn't matter to most of us anyway. Most of us probably already have it. It's doubtful that it's transmitted sexually or through saliva, since most people's spouses don't seem to also get it, and b/c if it were transmitted sexually it seems it would be much more prevalent than in just a little over 3% of the population. Maybe through blood, which would be harder to transmit, but we don't really know, it's all speculation at this point.

    But ease up on the vaccine theories. We are never going to get them to admit anything bad about vaccines, they are heavily, heavily invested in vaccines, financially and culturally. We just make ourselves targets of derision and attack by even mentioning it, imo.
  6. fresh_eyes

    fresh_eyes happy to be here

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    She's right, right? 'Cause not everyone is going to get that.
  7. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    <beep> <whooooosh> Thats negatory, Colonel, Sir. <b-beep> An amorously transmitted infection can have any prevalence, and it isnt particularly unlikely to have a rather low one, as far as I know. Though it is quite true that syphilis used to have a prevalence around 10% in western cities. Ah, those were the days. Dangers, perils, enforced a conservative amorous morality that, in the long run, accords better with human nature and dignity anyway. There was a whole lot of stuff like that back then, actually.

    Penicillin helped the Allies finish the war to some degree, because you just cant keep GI Joe away from those dames nocturnes. Human nature, not always a pretty sight. And while tactics and manful spirit did matter, the war was largely a deterministic function of manpower and industrial manufacturing capacity, though certainly not as much as the Great War was. Ululating neurosyphilitcs didnt exactly top the list of the most bellicose national resources. Nippon thought her very noble military tradition and spirit would win the day: not exactly, not when she fielded something like 5 or 10% as much metal per soldier as the Allies (and the european members of the Axis). They never had a chance against the far larger yankee industrial base, nor could they effectively damage that base. And Hitler was crazy, possibly a crack baby. Just kidding. Or, you guessed it, quite possibly a mild neuropsyphilitic -- seriously. And what a state the occidental intellect is in because of that war, just as the Russkie one got all mangled due to the first war. "If George Washington were alive today, what a shining mark he would be for the whole camorra of uplifters, forward-lookers and professional patriots!"

    To all female somatization theorists that might be reading: if you be slender, under 35, and fair unto the senses five, please drop by my place to prove through me (a mere vessel) your just affection for M. Jean-Martin Charcot. Or send your daughters. Just forget what I mentioned above about conservative mores. Afterwards, I will duly pronounce you without sin, or least without the specific sins of cowardice and half-intentional humbug. I mean, you are pretty sure of yourselves about the whole thing, ja? Ah, the things you cause me to say in mixed company -- through no fault of my own!

    Actually, as we all know, Charcot had much more excuse than you theorizers do today: do take advantage of your modern opportunity to get a solid education in a real discipline.
  8. fresh_eyes

    fresh_eyes happy to be here

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    Another classic from Eric Johnson. :) Love your posts, man.
  9. Katie

    Katie Guest

    Second thoughts. Deleted. Merry Christmas y'all. :D
  10. CBS

    CBS Senior Member

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    XMRV and tranmisability

    Perhaps both men and women are at increased risk for urogenital infection with XMRV leading to cell abnormalities.

    Forgive me if this is old news: http://www.lerner.ccf.org/news/notations/2009/9/1.php

    It is written by Dr. Silverman and looks like it was put out on the Lerner institute web-page in September.

    I also posted this on the "Cleveland Clinic: XMRV in Gynecological Malignancies" thread.
  11. froufox

    froufox Senior Member

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    I don't know if the posts made in the last couple of days with regard to vaccines were to do with the info that I posted several weeks ago on this thread re vaccines & CFS but I'd just like to say that I don't think that a couple of posts on this topic is going to hurt the CFS cause, I dont know how anyone could come to that conclusion. A few posts and a short discussion does not represent the whole of the CFS community.

    Besides it is a perfectly valid topic for some of us who are trying to work out the aetiology of our illness. A theory which includes the role that vaccines can play in triggering CFS for some of us is very relevant even if it not relevant to the majority of people here. I dont think anyone can say that is only one cause to CFS although obviously we're all waiting for more good scientific research to be published, but for some of us vaccines may well have been a cause or at the very least a catalyst. Obviously more research needs to be carried out in this area.

    Anyway it was my fault for taking the thread off topic when I asked Ross about his experience of having Hep B vaccines and then shared my own very similar experience. So it wasnt directly about XMRV transmission which was what the thread was originally about. Thats all I was doing plus I wanted to share some links from other sites that shows that for some people their ME/CFS seemed to be triggered by vaccines. It is not 'wild' speculation and no-one was talking conspiracy theories either so it would be good if people could put things into perspective.

    I agree it would be a good idea if the thread was split up if it is possible to do that, thanks for offering Kim.

    Thanks
  12. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Pardon my poor taste above. I get pretty wound up now and then.

    Mathematic considerations apply to trying to have kids, for me. More multivariable calculus, in fact, than youve probably ever used before in real life, unless youre an engineer. Just kidding, it is extremely simple.

    I'll assume for the sake of speculation that our new friend the X factor turns out to have the same transmission HIV does, so that my putative offspring neednt worry about all that. He can just marry another patient, there are plenty of em about.

    The risk of debility, poor quality of life, remains. But one kind of debility is just as good (bad) as another, to a large extent. Suppose XMRV causes CFS, there is some vertical transmission, and the right interventions get it down to 1%, which is none too dissimilar to what happened with HIV. All that is science fiction at this point, of course.

    Further, posit that treatment is only 70% effective so that some misfortune still applies to someone that got the virus vertically. I would find this risk acceptable. The reason is because there is already a significant body of risk, so adding this risk does not really change things by more than, say 10-20%. For example, the lifetime risk of schizophrenia (or of any incurable disease) is roughly the same as its point prevalence, in schizophrenia's case about 1%. Thats high, far higher I think than most people would guess. Multiple sclerosis, ~0.2% as I recall. There are some rather benign cases, but most arent, I think. Epilepsy also ~1%; I'm not sure how many cases of it result in poor life quality. Some certainly do. Birth defects. Severe chronic depression. Accidents. One could go on. I'm not counting things that would largely afflict a person above 60, since decrepitude and death at such ages are certainly "fair", insofar as illness and mortality are fair at all.

    The chances of life being bad are rather imposing, and CFS is only a sliver of this. Even beyond debility, there is a lot of carnage and upheaval in this world that is just plain death. In my country, a stunning two million+ people have been killed by cars, four times the number killed in battle in the 20th C., which amounts to a lifetime fatality risk of ~1% (a bit above 1, I believe). I have no idea how many survivors of accidents are maimed, or (what is generally worse) have chronic pain.

    Merry Christmas! I still drive a car, of course. But I stick to speeds around the 5th percentile, much to the chagrin of my fellow townsmen.
  13. starcycle

    starcycle Guest

    Do people actually lurk here for that purpose?

    Wow, and I thought I had no life. o_O
  14. starcycle

    starcycle Guest

    Sounds like they're suffering from some kind of voyeuristic and possibly obsessive mental disorder. Healthy people aren't typically interested in actively seeking out the details of the lives of complete strangers for furtive observation like that.
  15. fresh_eyes

    fresh_eyes happy to be here

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    Are you kidding me? Nobody ever made reading about CFS more floridly entertaining.

    Is this question on the table in your world? It is in mine.

    @ everybody - Open discussion is so important - I don't want froufox and others to refrain from speculating about the possible etiology of their illness! It's interesting and may well prove relevant. That said, it's probably good to bear in mind that everything we say here is public and can be read by people who do not want to help us. I think as long as speculation is communicated as such, we don't come across as irrational. You know who comes across as irrational? The 'doctor' who wrote that absurd 'science-based' commentary without even reading the Science paper.
  16. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I read that Sci-Based Med piece long ago. It was not accurate.
  17. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > Is this question on the table in your world? It is in mine.

    Yeah, it is definitely unresolved for me. I want to wait and see if there is vertical transmission, and (if there is) a way to reduce it. But it will probably be a few years. I'm 29 already, and might want to emigrate to central Europe before finding someone to marry. While I woulda married a girl of 25 girl when I was 25, at 33 or so I will probably rather marry a girl of, well, 25. So maybe I will.
  18. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I think the vaccines thing is definitely impolitic and kind of a liability. But it is certainly a valid thing to theorize on. I mean heck, it just might be true.

    Anyway it will all be over for those somatizers, soon enough, if Mr. X can manage to show up distinctly in just a few more assays.
  19. fresh_eyes

    fresh_eyes happy to be here

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    Oh, yeah, you have plenty of time to get all that figured out, you youngster you. Now at my age...:rolleyes:
  20. spit

    spit Senior Member

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    That's how I feel about it, too. I don't believe that vaccines will likely wind up connected, but I sure as hell don't know everything, maybe they will somehow, and it wouldn't be the first time we thought we understood something better than we actually did. In the meantime, talking about it riles some folks up quite a lot, but this is a forum of random folks expressing their own experiences and thoughts. If some MD is so bored and hyper-focused on "disproving" CFS as to be judging a potential scientific finding based on discussion between random individuals on the internet, I'd say the random individuals aren't the ones displaying irrational and unhinged behavior.

    And in the end, the science will pan out or it won't, at least for now. If these findings hold up, these folks will be faced with the knowledge that they have been letting their biases and assumptions lead to mistreating a bunch of sick people. I wish I thought that would give them pause or make them reconsider their attitudes generally, but I suppose it never has with any of the other "psychosomatic" conditions that were later shown to be organic, so I won't hold my breath on that.

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