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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Trine & Tribune All Over Contamination Theories

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by floydguy, Dec 21, 2010.

  1. floydguy

    floydguy Senior Member

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    Trine gleefully covers Retrovirology Papers. Quotes several people from PR. Other quotes include this one:

    "These four papers are probably the beginning of the end of XMRV and CFS," virologist Vincent Racaniello of Columbia University wrote in an email. "They don't prove that XMRV (and related viruses) don't cause CFS, but they go a long way to explaining many of the different findings in different labs."

    http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20101220,0,5526992.story

    Read the article in Sun Sentinel (Palm Beach County, FL) this AM.
     
  2. RivkaRivka

    RivkaRivka Senior Member

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    I just sent this to the Tribune reporter, and to the Washington Post, Bloomberg News, USA Today reports who have covered XMRV. Feel free to use it to contact other reporters.

    To: ttsouderos@tribune.com
    From: Rivka
    Subject: Correcting "XMRV is dead" headlines

    Dear Ms. Tsouderos,

    As you likely saw, and reported on, there were lots of headlines yesterday saying scientists have found XMRV is not related to CFS. Below are 4 quotes from key scientists and/or news articles (Wall St Journal) stating that XMRV's link to CFS is not dead.

    Warmly,
    Rivka

    _________

    == FOUR QUOTES ==

    1. The reporters of those "XMRV is dead" articles did not do their research like Amy Marcus of the Wall St. Journal did. Here is her story from Dec 20, 2010, where you'll read that the detractors of XMRV are fast backpedaling.
    <http://blogs.wsj.com/health/2010/12/20/xmrv-how-to-screen-the-blood-supply/>http://blogs.wsj.com/health/2010/12/20/xmrv-how-to-screen-the-blood-supply/*

    2. Here is a quote from the bigwig NIH viral-hunter, Ian Lipkin:

    "These papers emphasize the pitfalls of molecular assays and raise concerns. Nonetheless, it is premature to rule out XMRV or related viruses as factors in prostate cancer or CFS. Links have also been made based on serology and the presence of viral proteins as well as of viral sequences. Thus, we still need appropriately powered, rigorous blinded studies of well characterized patients and controls. One such study is underway under the auspices of the National Institutes Health.
    Ian"

    W. Ian Lipkin, MD
    John Snow Professor of Epidemiology and Director
    Center for Infection and Immunity
    Mailman School of Public Health
    Professor of Pathology and Neurology
    College of Physicians & Surgeons
    Columbia University
    722 West 168th Street, 17th Floor

    3. Here is a quote from the authors of the original Science paper of Oct 2009
    http://www.facebook.com/notes/andrea-whittemore/dr-mikovits-responds/495512512528

    Whittemore Peterson Institute Statement

    "The Lombardi et al. and Lo et al. studies were done using four different methods of detection. They were not simply PCR experiments, as were the studies by McClure et al. and others who have recently reported their difficulties with contamination. Experienced researchers such as Mikovits, Lombardi, Lo and their collaborators understand the limitations of PCR technology, especially the possibility of sample contamination. As a result, we and Lo et al. conducted rigorous studies to prevent and rule out any possibility that the results reported were from contamination. In addition to the use of PCR methodology, the Lombardi team used two other scientific techniques to determine whether, in fact, we had found new retroviruses in human blood samples. We identified a human antibody response to a gamma retroviral infection and we demonstrated that live gamma retrovirus isolated from human blood could infect human cells in culture. These scientific findings cannot be explained by contamination with mouse cells, mouse DNA or XMRV-related virus-contaminated human tumor cells. No mouse cell lines and none of the human cell lines reported today by Hue et al. to contain XMRV were ever cultured in the WPI lab where our PCR experiments were performed. Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins. Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses. We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes and thus is a human infection of as yet unknown pathogenic potential "The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data. -- Judy A. Mikovits"

    4. Here is a quote from Europe's most noted CFS doctor, Prof. Kenny De Meirleir

    “The contamination by mouse material was excluded in our study, that of Lo and that of Lombardi et al. We are not using PCR as a basis of the test but human prostate cancer cells that do not express RNase L so the virus from patient’s blood can grow in it. We also sequence the virus and I can assure you it is not mouse material. Governments and insurance companies are horrified by the idea that there is a new retrovirus out there that has infected 10 times more people than HIV up to date. My preliminary data show that the virus does not grow in culture anymore after Nexavir + GcMAF although the procedure was identical to the pretreatment culture. In the next months more will come from our side. A study with healthy blood donors, ME patients who got ill immediately after blood transfusion and ME patients who gave blood after they got ill will be published in the first half of 2011. What these 5 are doing to the patients is a crime against humanity. -- Kenny De Meirleir"
     
  3. Rivotril

    Rivotril Senior Member

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    amy rocks, chicago tribune is on the side of the psychomafia since ages
     
  4. Esther12

    Esther12 Senior Member

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    I'm a spokes-person!!

    "On message boards, some chronic fatigue patients reacted to the quartet of new papers with dismay. "I've got to admit, it feels like a bit of a blow," wrote esther12 at Phoenix Rising. "We'll have to see how it all works out." "

    That wasn't dismay Trine! A 'bit of a blow' is far short of that... does it have different connotations in the US?

    I've only had brief moments of thinking XMRV was likely to work out, and I still think there's a substantial possibilty that it will. It would take far more than this relatively minor shift in probabilities to enduce true despair. I don't think I've felt that since Twin Peaks was cancelled (just when it was perking up again!)
     
  5. ukxmrv

    ukxmrv Senior Member

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    I guess Esther, that it shows how well watched we are and how careful we need to be with what we write. Not your fault - she probably scoured this board looking for any possibly ambiguous statements that could be used.

    Have you written to her with a correction if you feel misinterpreted? I'm not sure how the USA paper system works and if you can ask for a correction in this way?
     
  6. Jemal

    Jemal Senior Member

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    Congrats on getting your comment published Esther12 :)

    That quote from Vincent Racaniello is a pretty big deal though, I think?
     
  7. Esther12

    Esther12 Senior Member

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    What do people think? I don't think I'd bother for myself, but if others think it's damaging and misleading for us then I could write in.

    @ jemal: He's just put up a new blog post which sounds more uncertain. Maybe Trine took a more inflammatory comment from his e-mail? Or maybe he toned himself down for his own site?
     
  8. Jemal

    Jemal Senior Member

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  9. camas

    camas Senior Member

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    If it was me, I'd raise holy hell with her editor. To pull a comment out of context from a patient's board without permission of the commenter is the height of laziness and terribly unethical. Does this woman even have a degree in journalism? They should put her back on the food beat.
     
  10. RivkaRivka

    RivkaRivka Senior Member

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    i agree with camas. your quote was out of context, e12! and it made it seem that cfs patients AGREE that the negative studies that came out yesterday are stating that xmrv and cfs are not linked. when, in truth, most of us think the studies were specific to PCR. and all the other things that judy said (see my above post with her quote).
     
  11. BEG

    BEG Senior Member

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    "Bit of a blow . . . " hardly connotes a catastrophe, Esther12. I, personally, wouldn't bother giving Trine the time of day. She's a horrible journalist, and the reality of XMRV's existence doesn't rest on her sub-par reporting. Just forget it. There are bigger fish to fry.
     
  12. Esther12

    Esther12 Senior Member

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    Ah well. I just sent off an e-mail explaining why I was worried about the use of my quote.


    Oh oh.


    "On message boards, some patients developed anxiety disorders in response to the quoting of..."
     
  13. lancelot

    lancelot Senior Member

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    We are all being watched by the biggest and the baddest in CFS/ME. PR is or will be the world's largest ME/CFS forum. The power of the internet has given all PWC a voice that otherwise would not have existed just 15 years ago with snail mail. No longer will WE allow people like Reeves drag CFS into the twilight zone.
     
  14. SOC

    SOC Senior Member

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    I find it disturbing that Ms T read (or wants to imply she read) this forum and that's all she got out of it. That is definitely trolling for a quote you want, not information gathering. Very poor journalism. But we knew that.

    Does anyone else wonder if Ms T has a friend or family member with ME/CFS -- one that she has been dismissing for years as a a psychological case? She seems to be working hard to find information she thinks proves her point and ignoring the info that refutes it. It suggests there may be a personal reason for her lack of objectivity.
     
  15. lancelot

    lancelot Senior Member

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    Dont worry, Amy Dockser Marcus will crush her!
     
  16. floydguy

    floydguy Senior Member

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    I vaguely remember reading that she also has the Autism folks up in arms. I think she has a relative who is a very mainstream MD. So she may focus on issues that reflect very conservative MD perspectives, ie Autism is a genetic, behavioral issue definitely having nothing to do with vaccines and ARV's are bad, bad, bad!
     
  17. WillowJ

    WillowJ Senior Member

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    Out of context, maybe, but this is a public forum. It doesn't require permission because talking here is kind of like making a speech in a public forum. We feel like we're talking to our own group and we feel like we would have an expectation of privacy, but in actuality this is the world wide web.

    So, yes, everyone needs to say things the same way they would in public, as if we were talking at a CFSAC meeting and there were newspeople present. We can't control things being taken out of context, but we can control our presentation.

    Also, since she included the bit about seeing how things would work out (that esther said), I thought that made it sound like esther12 and PR in general wasn't necessarily buying the not-connected-after-all. Even though she didn't try very hard to get some of the other not-taken-aback comments (but I also didn't check to see how many there were earlier in the thread).

    ok, really do have to go... have obligations...
     
  18. Bob

    Bob

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  19. Bob

    Bob

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    Congratulations Esther, on your new-found fame!
    You're in the LA Times as well...
    I wonder if you can insist on being paid royalties? It might be worth demanding a payment from them.

    I think that your comments come across as pretty neutral... Just an expression of our feelings after the publication of 5 negative papers... It does feel like a bit of a blow for many of us, even if we don't buy into the conclusions of the Hue paper.
     
  20. camas

    camas Senior Member

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    Well, it's not too tough to hold ourselves to a higher standard than journalists who exploit ill people in their moments of uncertainty or despair by cherry picking quotes to suit their particular slant. BTW she also quoted Dr. Rancaniello out of context as you can see by comments on his blog. Poorly, poorly done.
     

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