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Lipkin presenting at WPI

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Jun 15, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have no reason to doubt that the WPI is aware of the dangers of the Lipkin study and of the potential for all or most of the samples to be negative (and I have some difficulty seeing where any postives are going to come from - every sample contributor has their own iron in the fire; none are primarily pro-XMRV.) So I assume they are holding something back, or should be holding something back. This was alluded to by de Meirleir and Mikovits, and may be the source of all the optimism.
  2. Jemal

    Jemal Senior Member

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    He's probably right about that though. ME/CFS is somewhat of a trashbin diagnosis in some countries, so I don't think XMRV/MLV's will be found in 100% of ME/CFS patients. There's bound to be people amongst us that have other, unrecognized diseases that have a lot of overlapping symptoms. These could be very serious diseases as well, with entirely different causes.

    I don't think the trashbin is as bad as some scientists and patients believe, though. I think we will see very high percentages. Just not 100%.

    Lipkin could also mean it takes multiple agents to create a disease state like ME/CFS. XMRV to hurt the immune system and viruses like EBV and CMV to bring down the hammer (for example).
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What do you think they have been doing for the last 30 years?!!

    It may or may not have been HGRVs, or the DeFreitas RV, but it's probably some RV and even if not they have definitely been waging a war on ME science and patients and letting the disease itself spread unchecked.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    WPI has already published (i believe in the May 2010 addendum to the Lombardi study) in a journal that the samples were blinded and handled in exactly the same fashion. The fact that this is totally dismissed by the 'contamination people' disturbs me because they are basically saying, by giving this zero weight, that WPI are lying (or perhaps extremely incompetent). I understand that bias of a lab can have subtle influence on the outcome (even in the absence of lying and fraud) but the statement by WPI that all the samples were handled in exactly the same way seems pretty straightforward to me- either they did or they didn't and they're lying about it. The Lipkin study would be conclusive if it arrived at the same results because Lipkin doesn't lie and WPI does?
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We definitely should interrupt to correct. "CF" is totally unacceptable. They should all know better by now. Just yell out "ME!" whenever someone says "CF"

    Every meeting or conference should use the 'looney fine' that one Canadian conference instituted that fined everyone that said CF a looney for each time. A Looney is a canadian quarter I think. Yell out "Looney!" when someone says "CF"

    I'm totally serious about this. This would help us out alot (and be fun).
  6. Esther12

    Esther12 Senior Member

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    The samples came from different sources though, so can't have been treated in exactly the same way as one another - the WPI were quite honest and open about this. With the Lipkin study, all samples are being drawn in the same way, stored in the same way, tested in the same way. With the Science paper, it's possible that contamination occurred prior to blinding.

    I quite agree that lots of CFS 'science' has been so bad it could almost count as a conspiracy... but I think that's largely down to ignorance, prejudice, and the difficulty of doing good research for a dustbin diagnosis like CFS. With XMRV, we're playing a very different game. A specific, testable claim has been made that will either be confirmed or not. I wish something like the Lipkin study had been set up earlier, but now that it's under-way it looks like exactly the sort study I wanted done.
  7. shannah

    shannah Senior Member

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    Cute and creative Justin! By the way, a loonie is a $1.00 coin in Canada, a twoonie is a $2.00 coin. Both are quite a bit larger than a quarter.
  8. shannah

    shannah Senior Member

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    Here's a very short (1:27 minutes) You tube clip from that day

    "It smells like a viral disease." - Ian Lipkin 6/24/2011

    http://www.youtube.com/watch?v=dW5FwCWoelY&feature=youtube_gdata_player

    Lipkin says "It would not? at all surprise me if it was a common viral infection to which people had an uncommon response."

    At this late date going forward about to start the study, I don't find this statement very reassuring for a promising outcome.
  9. CBS

    CBS Senior Member

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    Thanks for the link to the video.

    He also mentioned a 1999 study in which he and four other investigators tested for Borna Virus as a possible causal agent in CFS (Absence of evidence of Borna disease virus infection in Swedish patients with Chronic Fatigue Syndrome. Journal of NeuroVirology (1999) 5, 495-499). The Borna virus results were negative and a large majority of that paper focuses on the negative Borna virus testing.

    In his address at the WPI, Lipkin states that he came away feeling like there was evidence for an alternative conclusion to the findings of that study. The paper barely mentions it but Lipkin says that is was his opinion that they found evidence for immune activation (elevated polyclonal B-cells) in CFS patients.

    If all Lipkin does is serve as an XMRV referee, I would consider it a significant lost opportunity given all of the sequencing tools at his disposal.
  10. sleepy237

    sleepy237 Senior Member

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    I think this presentation highlighted what an exclusive and excluded group we are. I dont want to give negative feedback but as Lipkin started the presentation with Pandoras box and all that was left was hope, by the end of the presentation I was left hopeless. The only true hope does truly belong with the WPI.
  11. eric_s

    eric_s Senior Member

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    Around 67:15 (didn't check again now, but i think it's there) he basically says: "Please give me a cheque, then i'm more than happy to do it". So it seems, once again, the problem is the lacking funding. And Judy is nodding about 100 times while he says that.

    Depending on the outcome of the Lipkin study he might not be the one we want to be associated with, but i really think this is our main problem and what we should think about most. How do we get more funding?
  12. Recovery Soon

    Recovery Soon Senior Member

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    So far that hasn't worked out so well.
  13. shannah

    shannah Senior Member

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  14. eric_s

    eric_s Senior Member

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    Thanks. Now there is XMRV Global Action and XMRV Global Advocacy :D

    What (who) exactly is XMRV Global Advocacy?
  15. Bob

    Bob

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  16. Rrrr

    Rrrr Senior Member

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  17. Daffodil

    Daffodil Senior Member

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    i dont really understand..lipkin says he can do the work if a person donates a million dollars...but havent people raised 100's of millions for diseases like MS, ALS, Parkinson's, etc. over the years? why haven't they found pathogens for those diseases?
  18. Rrrr

    Rrrr Senior Member

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    we petition HHS for that money.
  19. eric_s

    eric_s Senior Member

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    I don't know. Did Lipkin look for pathogens in these groups? If so, then maybe there are no pathogens involved there (usually) or he is not able to find them?
  20. eric_s

    eric_s Senior Member

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    I will sign it, if you accept non-US citizens who live outside of the USA.

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