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Article: Who's In? and Who International XMRV Workshop

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 23, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    There you go! They have published on the IACFS/Website how to find XMR..it was not in the rebuttal in the Science paper....I guess that's why Racaniello didn't know about it. (Good digging :))

    They say here:
    I'm not sure about the first one but I'm sure that nobody has done this one.

    So its out there but not technically published...this may be a logistical problem (of all things).
  2. V99

    V99 *****

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    Cort, could you tell me about Abbott Pharmaceuticals. I assume they are connected with the prostate cancer studies?
  3. V99

    V99 *****

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    No, it's from IACFS/ME, and this was published in spring.
  4. Cort

    Cort Phoenix Rising Founder

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    All I've heard about them is that they are big players in the diagnostic testing arena - so they are interested in producing antibody tests and hopefully make a mint of money off of them. That's what I've heard. Nothing really firm.
  5. V99

    V99 *****

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    I guess Abbott would like to have their own test? and if they were declaring their interests, it would be one.
  6. judderwocky

    judderwocky Senior Member

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    for what its worth... I think Ruscetti's little slide about the envelope proteins will shut them up....

    who knows... think of it like this... they are pairing up speakers who found the virus with people who didn't... they are basically doing what everybody in the scientific world has been asking them to do... get everybody in the same room and compare notes.....

    The cdc might be trying to dig its heals in ... but people know mr. switzer is not alter or ruscetti.... remember this workshop is being housed by NIH... they're going to be on "his" turf. At some point there has to be a discussion between the negatives and the positives an that might be what is being arranged here....

    I think that Ruscetti is more than competant enough and i think he has shown that their own experiments produced the "fails" that the CDC had when they used that env pcr sequence....

    That is a very powerful piece of evidence and it will explain the situation to many.... anybody that looks at that slide with all his data on it, is going to have an "oh so thats why they couldn't find it" moment...it was in that presentation he gave at tulane or emory... i think it was to the emory med students... the videos for it or down (although I downloaded them first lol)

    either way we have much more powerful institutions coming on board with this than the WPI....

    We now have the FDA/NIH wit their reputations on the line.

    This could be a very tense set of debates.... and in the interest of not "brow beating" the cdc... maybe the committee just realized that they needed to stick to a slightly less controversial figure.....

    I mean... when you're telling somebody their doing everything wrong... sometimes it helps to hear it from the least controversial person in the room.... and clearly the committee has gone out of its way to put a bunch of labs in the room that WERE ABLE to find the virus...

    i think the people organizing simply want less tense opportunity to do what scientists have to do in a situation like this.... compare notes....

    Mr. Switzer is going up against people with more education and clout than him. He knows this. A cornered dog will get angry though.... and a wise commitee organizer might have simply made an executive decision to turn down the decibel level.

    what im saying is... HIV took 3 years to sort out ... and that was very controversial... controversy over this issue has been building MUCH longer and so there is even more room for public "shame".... thats an obstacle to the scientific process that they have to get over....the social aspects of the disease...the way its been treated... create controversy that hampers the science.......they are probably just trying to make things a soft a blow as possible
  7. V99

    V99 *****

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    It's not happened so far.

    You sound like you would be happy to have the WPI removed from the entire thing. This would be unwise, ridiculous, and downright rude. Power is not a good thing, rigorous science is.

    They haven't published yet, and will he be there?

    That would be unscientific and political, and Switzer is speaking.

    Ruscetti has also said that the 3rd study was unethical, hardly none controversial.
  8. judderwocky

    judderwocky Senior Member

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    It would not be logical to assume that I want them gone simply because I understand the process, system, and environment of the way these committees work. You're attempting to pitch me in with groups you are opposed to because you are frustrated with my explanation. I have been in contact with the WPI for the last couple days...i am a huge fan of theirs. Have you seen the article I just wrote ... "all eyes on nevada" .... Don't fall into the trap of accusing people on your side that they're working for the enemy or siding with them... or whatever your implication is.

    Additionally it would not be "unscientific" and that is what you need to realize. Scientifically speaking you only need one representative from each of the conflicting papers to present. Your obsession with mikovitz presenting in this type of platform deals with your personal adoration for her. I love her. I think she should speak. But in the strictest sense of propriety they have included individuals from each group of scientists. this is not a cfs platform. this is not about her. this about various researchers from a couple different types of research comparing notes ... looking for flaws in their data....

    I'm not your problem. This conference is not a problem yet.

    You are wrong... the emory students in the video that saw the slide seemed to be very convinced. You operate under the delusion that all these scientists are scouring the internet looking for these slides and bits of information....

    GUESS WHAT... they don't consider these sources reliable. The only thing they consider "reliable" would be published study or a really good conference like this one.... this is exactly what we need... ruscetti has a chance to prsent a very good argument about a type of research on gammaretroviruses (mlvs etc) and PCR that he and his wife have been studying for literally decades. they know this is his his territory. They have put the perfect person across in my opinion for the sole purpose of exposing pcr flaws. in direct contrast to swtizer....

    for a verdict to be found... you have to try a case... isn't this what we want?

    in a case of switzer et all v. lombardi et all concerning pcr techniques on this particular virus and its detectability... i think ruscetti v. switzer is perfect... ruscetti is a demigod in this field and switzer is a mister... that seems like we win to me.

    like i said though... mikovitz is more outspoken and this comittee they are probably looking to tone things down... screaming at them that their choice to choose a low key candidate was wrong, is only going to prove them right in their minds...
  9. V99

    V99 *****

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    Which is why I said 'you sound like..." It's up to you if you want to believe you understand these things.

    Mikovit's is the lead scientist, Ruscetti would want her to present, this is a CFS talk, there is nothing more that can be said about it.

    If there is no problem, why are you commenting about problems?

    Yep, students!

    What sources are you referring to?

    Again, they have not put Ruscetti forward to present the talk, they had no choice. Ruscetti does not want to take Mikovit's place.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Way I see it, this will all be resolved pretty soon. The multi-lab study looking for reliable assay seems very thorough. From what I understand, they will have known positives, known negatives and spiked samples. All the labs get the same samples. The one that can distinguish accurately the most wins the "most accurate assay contest."

    Then, all researchers will know how to test for it accurately. I won't take but six months after that for researchers to come out with "is XMRV in CFS patients" studies from all over the world.

    And by the way, I wonder how long, after this wonderful assay is found, that the FDA will approve it and insurance will pay for it.

    Because here I sit, waiting for that.

    Tina
  11. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  12. Revday

    Revday

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    How nice for them.

    While we have suffered and died "they" don't want to step on anybody's (fragile ego-driven) face?

    Although I understand and respect your reasoning you do not appear cognizant or very empathetic to the CFS community's ugly historical experience. Please don't blame those of us who may be a little bit suspicious or bitter.

    Having this disease for over twenty years means I'm too sick to have any empathy for or want to play nice with these Suits.

    I've personally experienced the Emory position on CFS. I even worked to bring students to enlightenment, through the system. That experience would be funny if it hadn't been so painful. I've had more then one of their docs. inspire ever more suffering then when I wobbled in. Emory's credibility has been tainted by it's association with the CDC and it's policies on CFS.

    Were you aware that Emory Outpatient services will not make an appointment for those with CFS. And will turn individuals away should they arrive with the CFS diagnosis. This has been true in the Rheumatology and Neurological departments. But I digress.

    You do sound a little like you might be a troll. I've wondered. But if you are, you would be putting way too much time into such a subtle and thoughtful approach. Most trolls are loud, hateful, and unconscionably ignorant.

    Giving you the benefit of the doubt you are probably both scientifically trained and empathetic to all CFS sufferers. Perhaps you do think that what we think and experience is an important part of the discussion. I hope so. So far your posts have not suggested this in a very large or tangible way. Please don't take offense. This is just my analysis of the dynamic at play in this community.

    I hope you keep writing because alternative perspectives are important.

    I apologize for once again hijacking the discussion. I'll try not to jump in next time.

    Blessings.
  13. George

    George waitin' fer rabbits

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    Wow an entire chapter based on one sentence. Is there a full moon tonight? Or are we all just freakin' cause of coming storm?
  14. KHoltorf

    KHoltorf

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    Hi Cort,

    Dr. Holtorf here. I was hoping to get some info from you and members of the forum. We are starting to do more testing and treatment for XMRV on our sicker CFS patients (those that have failed other antiviral therapies such as Valcyte and Lyme Rx). As would be expected, most of our positive XMRV positive patients are also positive for chronic active EBV and HHV6, which would be expected due to immune suppression, but also for Lyme so more clouding of which one is the primary vs. secondary opportunistic infection as well as specificity and sensitivity of the tests. While I am not convinced that XMRV is the cause in most patients, I of course, have to keep an open mind and am always willing to change my mind if supporting data comes out. At this point with the evidence, I think it makes sense to give a trial of antiXMRV therapy for those who have not responded to other therapies and have tested positive. There is really no data on effectiveness of treatment, especially considering all the potential options, so the data is anecdotal at this point so we need to work with that (all therapies are an evaluation of risk/benefit ratio so patient selection and a mutual decision with a knowledgeable patient is the key). Thus, I am interested in hearing about patients who have undergone or undergoing treatment with antiretroviral therapiesgood or bad (an initial decline may not be all bad). Thus, I am hoping to hear from anyone that has been or is currently being treated with the antiretroviralsIll also post as we get some feel for the effectiveness of treatment. Cort, please also feel free to email me or call to discuss. Thanks and keep up the great work.

    Kent Holtorf, MD
  15. V99

    V99 *****

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    Hi Holtorf

    I think you will only find a handful of people in the world who will be taking ARV's.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And, I agree Dr. Holtorf, for those severely ill that have not responded to other therapies, I have no issues with them trying to treat XMRV, whether they have been tested or not.

    There comes a point where you can't get worse.

    And thank you brave souls for being the guinea pigs for us all.

    Tina
  17. Cort

    Cort Phoenix Rising Founder

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    To me the two comments about Africa are similar. Thanks for the heads up on Switzer. I simply copied and pasted the information from the website - which was wrong. In my defense I did state in the section on him that he is not a doctor but I'll fix it - Thanks!
  18. Cort

    Cort Phoenix Rising Founder

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    Absolutely...they want to have their own test - that's the whole reason, I would think that they would be in this game. I would think, though, that they would want to have their test have the widest applicability possible - ie that it would find XMRV in CFS patients as well as prostate cancer patients. How much better it would be if XMRV was found in FM, autism, etc? It would be a huge money winner for them.
  19. Recovery Soon

    Recovery Soon Senior Member

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    Wonderful perspectives. Thanks for clarifying the conference concerns, Judderwocky. Well said.
  20. Otis

    Otis Señor Mumbler

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    Cort wrote,

    Cort - do you have link? I would very much like to hear this. I heard him on TWiV (a month ago?) and he sounded very neutral and nowhere giddy.

    Thanks,
    Otis

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