1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Entrevista: la apelación del millón de dólares de Ian Lipkin para un estudio en el Microbioma
Simon McGrath se aseguró recientemente una entrevista con el mundialmente famoso doctor Ian Lipkin - un científico que sigue creyendo que EM / SFC tiene una causa física - para descubrir más sobre sus planes para un importante estudio del microbioma intestinal y para averiguar por...
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XMRV & Blood Supply Webinar Tuesday, Mar 29

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ahimsa, Mar 6, 2011.

  1. Riley

    Riley

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    It is currently just hearsay and speculation, but there are whispers emanating from several sources to that effect. Is there a paper? Will it be definitive? We just don't know.
  2. LJS

    LJS Insert Witty Comment Here

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    It is very frustrating to see people constantly preaching cover-up and conspiracy theories; I wish more people would stand up against it. It does nothing but damage the reputation of CFS patients and scares off reputable scientist from doing any CFS related research. What scientist would want to have their name on a publication studying a condition where the patients are in insisting conspiracy theories and a big cover up is to blame for their condition?

    You may be able to make the argument for why some scientist may want to disprove XMRV but there is no way to discredit the large number of scientist who have not found it at this point. Plenty of them have legitimately tried and have failed to find XMRV with sound scientific practices. Why would someone not want to find XMRV, it would be a huge achievement since everyone else if having such problems with it. Just read the article a few days ago with Dr. Brent Satterfield of Cooperative Diagnostics, his best friend has CFS and he put a lot of resources and time into trying to find XMRV and really wanted to find it but always came up with nothing. He talks about how he hopes he is wrong but the science simply does not show that to be the case at this point.
  3. toddm1960

    toddm1960 Senior Member

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    yeah I agree.....let's sit down and be quiet for another 30 years, it's worked pretty well for us so far.
  4. LJS

    LJS Insert Witty Comment Here

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    You don't have to sit down and be quite. There are plenty of ways of raising awareness and advocacy that do not involve conspiracy and cover-up theories. Its about bringing people to work together for a cause not driving people away from us.
  5. Riley

    Riley

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    I totally agree. I know this is the Internet, But the conspiracy theories have gotten way out of hand.
  6. Ernie

    Ernie Senior Member

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    No conspiracy, here Just plain old human error discovered years later. http://www.retrovirology.com/content/6/1/86 Unintended spread of a biosafety level 2 recombinant retrovirus

    From the paper: This hybrid amphotropic/Moloney murine leukemia virus was engineered in the 1980s [7,8] and neither the virus itself nor the plasmid (pAMS) containing its proviral genome were ever used in our laboratory. Although the precise source for the contamination could not be traced back, sharing cell lines with other laboratories seems the most likely explanation.
  7. toddm1960

    toddm1960 Senior Member

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    Rochester, New York
    So you really think we're in our current situation (no positive studies being published, and no funding for new research) because of people like Hillary Johnson? Hey everyone can have their own opinion, but if true, real science backs away from people fighting for their lives.........well we really are in a sad, sad state.
  8. Cort

    Cort Phoenix Rising Founder

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  9. Cort

    Cort Phoenix Rising Founder

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    I don't think that's happening. It's a tricky situation for sure. XMRV has gotten lots of funding...the WPI obviously has not. I think there's only a limited amount of influence they can have until XMRV is proven to be there by independent labs - until that point my guess is nothing they do with XMRV is going to accepted. (I except studies of genetic variability or studies of XMRV integration or other studies showing that XMRV is a real infection).

    If XMRV is validated then everything they do should be accepted. I think they are kind of limbo...

    Which positive studies are not being published? Anything using the WPI or the VIP Dx probably wouldn't be...On the other hand I don't understand why the NCI study is not being published - altho I have been told that journals are very wary about publishing something they think will be overturned. It could be that they are waiting for more definitive evidence (Genetic variability, DNA integration....) before they will publish studies showing XMRV is present..

    Do we know how many positive studies have not been published and what they are on?

    On the other hand - I think everything really rests on the BWG and Lipkin and the other studies going on.

    That is, unless there is some breakthrough that will explain things that pops up - as Dr. Mikovits intimates.
  10. currer

    currer Senior Member

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    I cannot find Dr. mikovits talk at NYAS anywhere on the web.
    Can anyone get it?
    Does anyone know why it has become unavailable?
  11. Waverunner

    Waverunner Senior Member

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    I agree to 100%.
  12. asleep

    asleep Senior Member

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    Cort, as is par for the course with your posts, this one is yet another clown car packed full of fallacies, misinformation, and fanciful reinterpretations of reality.

    Let's break this down. Sounds innocent and objective, right?

    Firstly, the phrase "if XMRV is validated" is a sneaky way of casually and uncritically dismissing the large body of evidence supporting XMRV: Alter study, macaque study, XMRV in respiratory secretions, prostate cancer integration, serology, viral proteins, etc.

    Harvey Alter himself stated that his study "validated" the WPIs work. Yet, in a mere four words, you have not only discounted his statement but also re-framed reality to exclude all of the supporting evidence.

    Secondly, your statement belies a false view of "validation" as a binary state that either exists or doesn't exist. In reality, though, "validation" is a sliding curve that accounts for the weight of overall evidence.

    This is important to understand because it is part of what powers your egregious and misleading dismissal of supporting evidence. Only by positing "validation" as some ephemeral on/off state can you successfully frame evidence out of the picture.

    In essence, you imply that each study is an island that either clicks us into "validation" or not. If it doesn't, then it is discounted in your view. The reality, though, is that all of the studies taken together slide us further toward or away from "validation." There is no magic study that decides all. You have made "validation" into a scientific Godot.

    So your "sources" (unnamed of course) claim that journals are making publication decisions based not on peer-review of a paper's evidence but instead on speculation about future findings?

    If this is true, this is a perversion of the scientific spirit: the potential overturning of evidence is the precise reason it should be published. That is how science operates. Evidence is put forward and challenged.

    Furthermore, this creates a catch-22: no one will publish evidence in support of XMRV because it might be dis-proven, yet XMRV will always appear likely to be dis-proven if no on publishes supporting evidence. This is a nice little system for ensuring that certain discoveries never gain scientific traction.

    Cort, the fact that you blithely and uncritically accept this state of affairs says a great deal about your position on XMRV and your understanding of how the scientific process should operate.
  13. Cort

    Cort Phoenix Rising Founder

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    I think something has been missed in Dr. Mikovits Talk. I think she actually presents a pretty compelling bit of evidence that however XMRV came about it that it really has infected the patients who's samples the WPI has tested.

    XMRV has alot of issues right now - but her idea seems solid to me. Check out the signature section.

    From the XMRV Buzz (not out yet)

  14. Sasha

    Sasha Fine, thank you

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    I thought this was being touted as a sort of holy grail that if found, would knock off the contamination argument and here it is. I wonder if it's in press?

    It's a bit of a weird situation where nothing can get published until everything gets sorted out. Normally, it's publishing everything that gets everything sorted out! Perhaps it is that things are just too fast-moving and people are waiting for the BWG study.
  15. WillowJ

    WillowJ Senior Member

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    yes, that's very strange; they should be letting things through to get sorted out in the journals. This "that should never have been published because of what we learned later" line is not scientific.
  16. shannah

    shannah Senior Member

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    Pathogens in the Blood Supply youtube videos deleted
    by XMRV Global Action on Friday, April 1, 2011 at 1:51pm.

    We deleted the videos after receiving the following message this morning:

    PLEASE NOTE: these videos have been posted without the permission of the New York Academy of Sciences, and we have requested formally that they be removed. Dr Mikovits' full presentation will be available soon on the Academy's website as an online 'eBriefing', and all who registered to attend will be alerted at that time.





    .
  17. ixchelkali

    ixchelkali Senior Member

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    Thank you for posting this explanation. I had looked at the NYAS website I couldn't find any indication of whether it would be available. I'll just wait patiently then.

    I just checked the NYAS website and the registration for that event is now closed, so I guess only those who preregistered will be able to see it.
  18. markmc20001

    markmc20001 Guest

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    I've been posting some stuff lately about conspriracy theories. I will try and back off for awhile, or keep it contained to threads I create with a warning label.

    However, talking about CFS and not talking about conspiracy theories is kind of like talking about CFS without talking about XMRV in my opinion.

    Pretty obvious there has been monkey business on the part of the CDC and other governments with their psychobabble and everything else. To me that is a conspriracy theory. For the CDC/MRC to release the psychobabble research (that we complain about here on a daily basis), while ignoring biological research for all these years is a major conspiracy. Beyond me how everybody can't see that part.

    So yep, it is a conspiracy and to me is fascinating. However, I realize many folks somehow believe the science should change the mind of the agency making all the rules to the game.

    By the way, sure many people at the CDC have no idea they are being manipulated.
  19. floydguy

    floydguy Senior Member

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    Sounds like a conspiracy theory to me so I'll stand up to it. Where is there proof that scientists have disregarded their institutions' instructions to conduct CFS research? Or have given up research money on their own because of the scary CFS patient population? Yes, there is a pathetic amount of research done on CFS but to blame it on the patients themselves I think is ridiculous. Don't you think it probably has more to do with the fact there is no money available for research? I don't think that the NIH, CDC, et al are holding back funding due to the fact that many of us think that there is a flying saucer stored under Groom Lake, NV.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That's annoying of them. Can someone post the link here to the vid on the NYAS website when they are alerted so I can see if i can watch it.

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