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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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WSJ: Amid War on a Mystery Disease, Patients Clash With Scientists

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Mar 12, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    I actually think it was mostly scientific interest that has driven XMRV and that's because the WPI produced such a solid paper. They showed they found it using PCR, validated that with antibody tests and were able to grow the virus....They were light years ahead of Defrietas in validating the presence of the virus.....and the publicity and media interest was partially the result of a very well done paper appearing in the one of the top journals...everything came together.

    Patient advocacy is important too and I think they are very aware of us = maybe more than we think..and even more so after CFS appears on the Front page of the WSJ. :)))
     
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort,

    I think you're right about the science, especially initially, being spurred by the fact WPI put together such a good paper providing very good evidence of an exciting/alarming hypothesis.

    But the only reason the media have become somewhat interested in this story, and indeed probably the main reason Dr. Collins and Dr. Koh have paid attention, is because of individual patients contacting the government and commenting on the internet on both the studies and resultant media coverage.
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    To be fair, I thought Michael Renaldi had a decent point. It is quite likely that not all presentations of CFS are the same thing and assuming that it is will indeed hurt the reproducibility of research.

    He doesn't sound completely 'brainwashed', otherwise he would believe that we'd all get better with GET or something.
     
  4. Cort

    Cort Phoenix Rising Founder

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    That only helps. I think the fact that we, as a community, respond to these articles and get them coverage only helps.
     
  5. glenp

    glenp "and this too shall pass"

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  6. VillageLife

    VillageLife Senior Member

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    yeah the wpi were backed up by some big names, NCI and Cleveland clinic - i think dr mikovits has said at the start the wpi didnt have a lab and a lot of the tests were done by the cleveland clinic and NCI.
     
  7. currer

    currer Senior Member

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    Hi,
    I have put this on another thread but,
    The timeline for the Lo/Alter paper was- sent for review 23rd March 2010
    30th June CDC and Lo/Alter papers withheld.
    1st July 2010 CDC paper published.
    8th July 2010 decision made to ban blood donation from CFS patients in UK (answer to parliamentary question)
    23rd August Lo/Alter paper published.
    1st Nov 2010 Blood ban imposed in UK

    This suggests that while the Alter/Lo paper was withdrawn, its contents and implications were known to interested governments before publication.
     
  8. ballard

    ballard

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    Google's main news page cites the WSJ article today. Look on the right hand side under "Spotlight." The article will now be seen by millions world wide. All in all, I think this is a good thing. :victory:
    http://news.google.com/nwshp?hl=en&tab=wn
     
  9. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    What the article failed to get across is that in some cases, patients' criticisms of what's going on with the science is legitimate. There are specific things that the people who are labeled as "scientists" could and should be doing much better.

    Not all of that has to do with our wanting the science to go faster. In fact, I think that most of us agree that some of the science should be going a lot more slowly -- like all those papers finding no retrovirus that were rushed to print.

    http://www.youtube.com/watch?v=hOyFbNDxcbU&feature=player_embedded#at=161

    There are a fair number of patients in this community who are scientists themselves -- or, rather, who would be using their scientific training to be working full-time as scientists if they weren't sick with this disease.

    I'm inclined to think that their input in the process is useful for all concerned. I wish the article had made that point.

    Best, Lisa
     
  10. insearchof

    insearchof Senior Member

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    Please don't forget that Defrietas findings were nearly 20 years ago and there has undoubtedly been a lot of scientific improvements in methodology etc that Lombardi et al was sure to have put to good use. When you consider that, Defraitas finding 20 years ago, was all the more remarkable. Further, Lombardi et al had 20 years worth of scientific developments to draw from -including the RnaseL association and piggy backing onto the findings of Silverman etc.

    Also Defrietas was a sole FEMALE scientist going up against the boys club: the CDC. She did not have the backing of the NCI or the ilk of the Cleveland Clinic behind her either. The CDC refused to use her methods of finding that retro virus.

    Her efforts meant that retrovirological associations with this illness, where not entirely fanciful and her contribution should not be quickly dismissed.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There are subgroups in ME, but he doesn't have a decent point. His point was that CFS is a "wastebasket" of fatigue caused by all sorts of things, none of which will cause it in the majority of patients.
     

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