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Lipkin presenting at WPI

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

  1. Esther12

    Esther12 Senior Member

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    Have they even been sent the samples yet? When we last saw a time-line it looked painfully slow.

    I think that the Lipkin study is solid enough that whatever the results, they'll be accepted. I guess those who thikn all XMRV is contamination could claim that the WPI were able to distinguish between CFS and healthy control samples for a reason other than XMRV - but that seems unlikely.
  2. Forebearance

    Forebearance Senior Member

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    Annette Whittemore mentioned in her recent TV interview that they were looking forward to having a chance to talk to Dr. Lipkin privately. It can only be good for more communication to happen.
    The TV interviewer asked a logical question, which was something like "Why haven't the CDC visited your lab?"
    Whoever visits the WPI's lab, I hope they wash their labcoats first!!!
  3. 5150

    5150 Senior Member

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    personally , i can attest to the World Class facilities at the University of Nevada, Reno; the wow factor is impressive.

    although i haven't seen Columbia's campus, or Lipkin's lab, he most certainly will appreciate Judy's surroundings. it's a beautiful place, impeccably well kept.

    of course, none of this should influence his scientific perspective ;)
  4. alex3619

    alex3619 Senior Member

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    Hi toddm1960, his visit is part of a public relations and information exercise is my guess. Aren't the results blinded - they are not supposed to be decoded until near the end? Bye, Alex
  5. 5150

    5150 Senior Member

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    I'm hoping to hear about what Ian Lipkin said today. it's still a bit early right now, but maybe someone who was there can post "anything new" or not?
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Reaction to Lipkin talk

    Distributed by the Help ME Circle listserv:

    This looks like a good experiment. Definitely will add very valuable info to the field, unlike many others that have been done. But is this really the be all, end all conclusive study that Fauci and the establishment is billing it as? Not a scientist, but did it really take a supposed genius like Lipkin, $1M+ and a couple years+ after the science papers to come up with and carry out this pretty simple and common sense experiment?

    And we are supposedly irresponsibly wasting precious resources by insisting that a modicum of proper research be done (such as this experiment) according to Levy and the other science obstructionists?
  7. Enid

    Enid Senior Member

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    Thanks justin - missed that. After all the egomaniac posturing and vitriol from the psyche clique another Titanic would be very welcome.
  8. eric_s

    eric_s Senior Member

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    Yes, it sounds very good, but i guess we will really have to wait until we see the results. I'm a bit scared to jump to a conclusion now. Also the signs at the NCI, for example, at the moment don't look like full backing of the NIH for XMRV/MRV in ME/CFS. I don't want to sound negative, but i think we will know when the study is done, not earlier. It seems they mentioned a date for completion that is a bit later than what we've heard earlier, but that's no big surprise.
  9. Jemal

    Jemal Senior Member

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    LOL.

    Thanks for posting Justin!
  10. Rrrr

    Rrrr Senior Member

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    thanks for posting, justin!!!!!!!!
    reading this made me cry with joy.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have a few questions:

    1. What do people think of the other 'de-discovery' paper he did on "CFS"?

    2. Why is he approaching this, the previous study he did on ME and the autism study as "de-discovery" rather than 'replication', "re-testing" or an 'attempt at confirmation' or some other neutral term and objective? He says he's 'agnostic', at least in his communication with the public (Prof. Racianello said on his blog that in a phone call Lipkin said things which I interpret as implying that this is not entirely true)

    3. Why does he call these disorders 'affective disorders'? Is there any other meaning for the term other than 'mood disorder' (eg depression, anxiety, etc)?

    4. Did he involve patient advocates in the process as he says that is important for buy-in? Who? Vernon?? I assume he is aware that CAA doesn't rep patients. do we need to make him more aware of this?

    5. Since when is it so difficult to publish findings that 'de-discover' pathogens in ME or autism?? It's pathetically easy.
  12. kday

    kday Senior Member

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    Worries me a bit, but I would like to see the full paper.

    I agree. If he is trying to look neutral his choice of words is poor.

    It's either an error in the peer review process, a demonstration of ignorance, or perhaps (unintentional) demonstration of bias amongst him and his peers.

    One thing I have learned from from this illness is not to trust anybody. Though I must admit, ignorance WAS bliss.

    I don't claim to know if XMRV plays a role in CFS or not and I am not saying Lipkin is good or evil. Because of my experience with this disease and lack of trust that developed because of it, I find myself questioning everything. I think it's completely necessary. I am not swayed by smooth talk.

    Is there anything in place to make sure that samples etc. are not tampered with (though I am not sure how that would be done)? It may sound paranoid, but we wouldn't want another one of these:

    http://en.wikipedia.org/wiki/And_the_band_played_on
  13. kday

    kday Senior Member

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    I have insomnia tonight, but I started reading the paper on the Borna virus, and one thing jumped out at me.

    The name CFS already bothers me enough, and what irritates me even more is when people (and medical journals) call the syndrome Cerebrospinal fluid (CSF). Ok, that was a bit irrelevant, but I wasn't expecting an error at one of the first sentences I (randomly) read. In fact, they called the syndrome Cerebrospinal fluid twice.

    edit: Finished skimming it. Seems that patients were positive by ELISA but all negative by Western Blot. I guess b-galactosidase presence can indicate cross-reactivity.

    They don't mention immune dysfunction. I believe a lack of an immune response that may be present in CFS patients could theoretically create a negative Western Blot. From a non-scientist perspective, I don't think this paper de-discovered anything, but someone please correct me if I am wrong. Not sure why Lipkin is so proud of it.

    Numerical error spotted in Table 1 as well, and I wasn't looking for errors.
  14. Doogle

    Doogle Senior Member

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    I don't know the answer to this but obviously amyotrophic lateral sclerosis and autism are not mood disorders. Seems like an incorrect choice of words.
  15. Navid

    Navid Senior Member

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    i think tampering of the samples is a huge concern and wish a safety guard to how this will be prevented was presented to the patient population. we do deserve to know that this process will be fair.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The two studies that found a link between Borna and ME were in Japan. Borna is usually found in ungalates like horses and sheep. However, Borna disease has never been reported in ungulates in Sweden. He studied Swedish ME patients because there had been an epidemic of encephalitis causing ataxia in pet cats attributed to Borna in the same area as a Swedish ME epidemic had occurred. (as Kday mentioned, his ELISA test was positive, but he chalked it up to cross-reactivity).

    To his credit, he noted that the different results could have occurred because of geographic and other differences. But to his discredit, in the present paper, he calls his ME/Bornavirus study a 'refutation' which he claims was hard to publish (yeah, right!) since it was a "Pathogen De-discovery."

    Regarding geographic limitation of encephalitis and myelitis:
    Encephalitis usually occurs in clusters and is caused by different (often similar) viruses in different areas of the world. Most of them are arbo-(arthropod-bourne) viruses so the different arthropod species native to different areas may be the limiting factor in the spread of a particular strain of virus. For example, Japanese encephalitis, is basically limited to... Japan.

    TSP-HAM, a multiple sclerosis-like myelitis caused by HTLV-1 is mostly limited to Japan, South America and the Caribbean. Note: the Merck Manual says HTLV 2 causes a variant of TSP-HAM. One of the retrovirologists, I think Coffin, has been saying that maybe XMRV is harmless in humans since not every human retrovirus causes disease, citing the example of HTLV 2. But, again, it does seem that HTLV 2 does cause disease. (though I don't know anything about whether HTLV 3 or 4 cause disease; not sure whether they are fully accepted as being human rvs; CDC (I think Switzer) found them in humans a few years ago).

    Also, herpesviruses (esp HHV 1 and varicella zoster) and enteroviruses cause many cases of encephalitis.

    Also, let me throw out a couple more random tidbits I just read: HHV 8 (cause of Kaposi's sarcoma in AIDS patients) is linked to NHLymphoma in AIDS patients. AIDS Dementia (evidenced by those "UBOs" on MRI identical to those in ME) is also called AIDS Encephalitis and is caused directly by HIV infection of the brain.

    All this suggests two particular viral ME scenarios to this layperson:
    (a) a new (or slightly mutated) herpesvirus, enterovirus, measles virus or other virus which typically causes encephalitis has emerged or
    (b) a new co-factor (retro)virus has emerged that magnifies susceptibility and modifies expression (eg from acute to chronic) of preexisting encephalitis-causing viruses.
  17. eric_s

    eric_s Senior Member

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    I agree with the concerns about the Lipkin study. That does not mean i'm paranoid or i don't trust Dr. Lipkin. I'm not even specifically thinking about somebody tampering with the samples, i'm worried about any potential influence that could distort the result, no matter of what kind. Any kind of error, incident, whatever. When there's so much at stake and people have set things up in such a way that this event is seen as decisive (which i don't agree with), then i think you need to take the necessary precautions.
  18. Esther12

    Esther12 Senior Member

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    I think they're being careful. It would be terrible if there was some error which meant the study were not carried out properly, but I suppose you could say that about lots of medical research. So long as they get the basics right, the results will be accurate, and I'm as confident as one can be that they will do. I don't think there's any reason to be concerned - other than the fact that it's important to us.
  19. eric_s

    eric_s Senior Member

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    Of course you are entitled to your opinion, but i don't think in something as critical as this not having concerns or being confident is enough. A pilot will also walk around the plane and check everything and not just be confident in the mechanics or the manufacturer. The people in the Mikovits and Lo labs certainly are very experienced, but i hope they are aware of the potential risks and get heard enough to be able to make sure things go right.
  20. Jemal

    Jemal Senior Member

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    Well, there's some reason for concern. Read this:

    http://www.theatlantic.com/past/docs/issues/2000/02/002bookchin.htm
    http://www.cancer.gov/cancertopics/factsheet/Risk/sv40

    It concerns a virus called SV40 that got into humans because of polio vaccinations. Although the first article is from 2000, there's a lot of stuff in there that I recognize from the current XMRV standoff.

    I was rather positive about the Lipkin study, but now I am having some real concerns.

    (Found these links on the ProHealth website)

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