The 12th Invest in ME Conference, Part 1
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CFIDS Assoc of America Q&A: Asking XMRV/CFS bigwigs about the Alter/Lo study

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, Sep 1, 2010.

  1. Rrrr

    Rrrr Senior Member

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    CFIDSLink Sep2010: From the CEO's Desk
    av The CFIDS Association of America kl. den 2 september 2010 kl. 00:45

    Over the past week, like most everyone else connected to the CFS community, Ive been working nearly around the clock to keep up with all the latest developments (http://www.cfids.org/mlv/default.asp) and to square them with everything I have learned over the past 20 years about CFS. Ive found myself absorbed into minute details, digging deep into the scientific literature to learn about murine leukemia viruses (MLVs), the first of which was discovered in 1951 by Ludwik Gross. Ive re-read all the XMRV articles numerous times. Ive listened again to archived podcasts about XMRV and basic virus machinery. But I have also found myself pondering more philosophical questions about the scientific process and its lack of predictability, even though it is based on logic and order and prediction. Down below, Ive quoted expert observers who have stated this more eloquently than I.



    With the help of the web, it is possible to read a written record of others dynamic reactions to news of this kind, and to gain at least some insight into their questions and expectations. I have observed a wide range of emotions expressed by individuals living with CFS about the latest study: relief that the Lo/Alter paper was (finally) published. Celebration that it supported the association of MLV-related viruses and CFS. Surprise that it was not a straightforward replication of the Lombardi/Mikovits finding of XMRV. Disappointment that the relationship(s) between CFS and this family of viruses might have become more complex, rather than been more simply explained. Excitement that Courgnauds commentary might influence pharma to start clinical trials of antiretroviral agents. Anger that an egg recall was getting more press attention than a finding of retroviral sequences in 7% of healthy blood donors. Confusion about what it all means. Frustration with others interpretations of what it all means. And overload with the barrage of reports.



    Ditto.



    To help sort out a small fraction of the issues raised by these studies and coverage of the latest study in the traditional media and on social networking sites, I turned again to experts people who worked on this study; people who are engaged in studies of CFS, XMRV/MLV or blood safety; and people who help communicate scientific findings. The result is the Q&A we have published in this issue of CFIDSLink at http://www.cfids.org/cfidslink/2010/090104.pdf. Like most complex topics, their answers often begged additional questions, but I was careful to respect their time and focus by not following each reply with more requests. I am grateful that nearly everyone I contacted responded; many replies came late at night or over the weekend. We anticipate receiving a couple more replies and will update the document as needed.



    While some people in the CFS community hoped that the PNAS paper would end the debate about XMRV, it has instead launched a whole new series of discussions. Next week, more than 200 researchers will gather on the NIH campus for the 1st International XMRV Workshop. The presenters hold diverse viewpoints about this emerging field of study and the participants probably reflect even broader diversity. The formal and informal dialogue will likely take the field in new directions, filling in some gaps and exposing others, broadening discussion even more.



    As the dialogue continues to unfold, we will continue to bring you news, analysis and commentary about this group of studies and all the other work that will make CFS widely understood, diagnosable, curable and preventable. Our resolve to achieve the mission of this organization is one thing about which you can be certain in these times of rapid change.



    Kim McCleary

    President & CEO

    The CFIDS Association of America

    September 1, 2010
     
  2. Rrrr

    Rrrr Senior Member

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    http://www.cfids.org/cfidslink/2010/090104.pdf

    FollowUp FAQs to the Study by Lo, Alter et al.

    September 2010 CFIDSLink In the days following the August 23, 2010 publication in the Proceedings of the National Academy of Sciences (PNAS) of, “Detection of MLV‐related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors” by Shyh‐Ching Lo, Harvey J. Alter and colleagues at the Food and Drug Administration, National Institutes of Health and Harvard Medical School, we collected frequently asked questions (FAQs). We requested answers from a range of experts familiar with this study, the emerging field of research into XMRV and other murine leukemia retroviruses, blood safety issues and the related media coverage. Here are their replies, in their own words.
     
  3. Rrrr

    Rrrr Senior Member

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  4. Rrrr

    Rrrr Senior Member

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  5. urbantravels

    urbantravels disjecta membra

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    It's the "addendum" to the original Science paper in which they provided the extra info about methods, etc.
     
  6. Rrrr

    Rrrr Senior Member

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    right! i see that now!
     
  7. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC

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