1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Lipkin Study Press Conference 18th Sept

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Sep 11, 2012.

  1. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    From ME/CFS forums.....

    The press conference will be held on Sept. 18th from approximately 11:00am to noon. It will be streamed our website (cii.columbia.edu), and you can expect an announcement on our website/Twitter (@CII722) with links to the specific pages on Friday/Monday.


    ------------------
    EDIT
    ------------------

    http://cii.columbia.edu/blog.htm?LOfRcb

    CII Press Conference

    September 18th, 2012

    10:30 AM (EDT)

    “Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”

    The causes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have long eluded scientists. In 2009/2010, two high-profile papers linked the syndrome to infection with a mouse retrovirus called XMRV (xenotropic murine leukemia virus (MLV)-related virus) and murine retrovirus-like sequences (designated pMLV: polytropic MLV). Given that affected patients often have symptoms consistent with a chronic infection, this viral connection was deemed plausible, and the findings were celebrated as a major achievement for a complex disease that afflicts nearly 1 million in the U.S.

    However, follow-up investigations by several laboratories were unable to detect XMRV or pMLV in CFS patients.

    To definitively resolve this issue, the National Institute of Allergy and Infectious Diseases commissioned a large-scale, multicenter study under the auspices of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, in partnership with the Centers for Disease Control and Prevention, the Food and Drug Administration, the NIH’s National Cancer Institute and Warren G. Magnuson Clinical Center, and others (see full list below).

    Investigators from the multicenter study on CFS/ME and XMRV/pMLV will discuss their findings and future directions.

    A live video will be posted below.

    For attendance at the event, members of the media should RSVP by 9:00AM on Monday, Sept. 17th to Nsikan Akpan (212-342-9051 | nea2107@columbia.edu) or Stephanie Berger, Mailman School of Public Health (212-305-4372 | sb2247@columbia.edu).

    When: Tuesday, September 18, 2012

    Press Conference begins at 10:30 AM (EDT)

    Who: W. Ian Lipkin, MD (Moderator)

    Center for Infection and Immunity (CII), Mailman School of Public Health, Columbia University

    Principal Investigator and Director of Center for Infection and Immunity

    John Snow Professor of Epidemiology

    Professor of Neurology and Pathology



    Harvey Alter, MD

    National Institutes of Health, Department of Transfusion Medicine

    Distinguished NIH Investigator

    Chief, Clinical Studies

    Associate Director of Research



    Mady Hornig, MD

    Center for Infection and Immunity, Mailman School of Public Health, Columbia University

    Director of Translational Research at CII

    Associate Professor of Epidemiology



    Judy Mikovits, PhD

    Mikovits Consulting



    Francis Ruscetti, PhD

    National Cancer Institute, Frederick National Laboratory for Cancer Research

    Head, Leukocyte Biology Section

    Senior Investigator

    Collaborating Research Groups:

    Department of Transfusion Medicine, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD.
    Mikovits Consulting, Oxnard, CA.
    Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, Atlanta, GA.
    Cancer and Inflammation Program, Frederick National Laboratory for Cancer Research, Frederick, MD.
    Tissue Safety Laboratory, Office of Cellular, Tissue and Gene Therapies, Center for Biologics Evaluation and Research, Food and Drug Administration, Bethesda, MD.
    Nova Southeastern University, Fort Lauderdale FL.
    Miami Veterans Affairs Medical Center, Miami, FL.
    Brigham and Women’s Hospital, Boston, MA.
    Infectious Disease Clinic, Stanford University, Palo Alto, CA.
    Fatigue Consultation Clinic, Salt Lake City, UT.
    Levine Clinic, New York, NY.
    Simmaron Research Institute, Incline Village, NV.
    Department of Biostatistics, Columbia University, New York, NY.
    Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY.
    Center for Infection and Immunity, Columbia University, New York, NY.
    Department of Molecular Biology and Microbiology, Tufts University, Boston, MA.
    CJB, August59, justy and 1 other person like this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,480
    I wonder how much press attention this will get now, and how the results will be presented. I guess I'll find out soon. Ta VL.
  3. barbc56

    barbc56 Senior Member

    Messages:
    1,483
    Likes:
    884
    Do you know where this announcment originated.? Was the twitter account the first time this was reported or was there a press release?. Obviously, I don't know that much about twitter. Thanks!!
    Barb C.>:)
  4. snowathlete

    snowathlete

    Messages:
    2,155
    Likes:
    2,515
    UK
    Timezone?

    I would think that regardless of the result it will get good press partly because of Lipkins status. That is one of the greatest benefits to having Lipkin inboard working on ME because he is so well regarded and connected.
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,968
    London
    I'm guessing New York time EDT. Hopefully someone will confirm
  6. Bob

    Bob

    Messages:
    8,140
    Likes:
    10,498
    England, UK
    I don't know what the source of this message is, but the full message, as found on ProHealth, is as follows:

    Columbia to Hold XMRV Press Conference Sep 18

    The findings of a study of virus involvement in ME/CFS patient samples, led by Columbia University 'virus hunter' Ian Lipkin, will be streamed live starting at 10:00 or 11:00 AM Eastern Time on September 18, according to a note from Columbia's Center for Infection and Immunity (CII). The live press conference will be found on the CII website (www.cii.columbia.edu), and an official announcement of the event reportedly will appear on the CII's facebook page within a few days.

    http://www.prohealth.com/library/showarticle.cfm?libid=17200
  7. Bob

    Bob

    Messages:
    8,140
    Likes:
    10,498
    England, UK
    I make it 3pm or 4pm UK time, on 18th Sept.

    10am EST = 3pm UK
    11am EST = 4pm UK
  8. snowathlete

    snowathlete

    Messages:
    2,155
    Likes:
    2,515
    UK
    Thanks Bob.
  9. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    Kind of nice to see it being released this way. I imagine there will be a lot of questions remaining at the end of the webcast so, hopefully the entire paper will be availble at that time or shortly there after.
  10. Wally

    Wally Senior Member

    Messages:
    287
    Likes:
    503
    As far as I could tell the announcement first came out on the CII Twitter account and then on their Facebook page. I didn't find any similar announcement on their website even though there is a "media" and "latest news" section. A bit confused myself on how "official" public information is disseminated when an organization is using multiple social media platforms.
    barbc56 likes this.
  11. barbc56

    barbc56 Senior Member

    Messages:
    1,483
    Likes:
    884
    Yeah, me, too.
  12. Mula

    Mula Senior Member

    Messages:
    131
    Likes:
    46
    The current fashion is to publish links on multiple media hosts.

    Do I follow, that you are unable to find where this message originated?
  13. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,968
    London
    I checked their twitter account and their facebook page but couldn't find it. The posting seems to have started on another patient forum. I'm wondering if it was an email to an individual.
  14. shannah

    shannah Senior Member

    Messages:
    843
    Likes:
    177
    http://cii.columbia.edu/blog.htm?LOfRcb

    CII Press Conference

    September 18th, 2012

    10:30 AM (EDT)

    “Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”

    The causes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have long eluded scientists. In 2009/2010, two high-profile papers linked the syndrome to infection with a mouse retrovirus called XMRV (xenotropic murine leukemia virus (MLV)-related virus) and murine retrovirus-like sequences (designated pMLV: polytropic MLV). Given that affected patients often have symptoms consistent with a chronic infection, this viral connection was deemed plausible, and the findings were celebrated as a major achievement for a complex disease that afflicts nearly 1 million in the U.S.​

    However, follow-up investigations by several laboratories were unable to detect XMRV or pMLV in CFS patients.

    To definitively resolve this issue, the National Institute of Allergy and Infectious Diseases commissioned a large-scale, multicenter study under the auspices of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, in partnership with the Centers for Disease Control and Prevention, the Food and Drug Administration, the NIH’s National Cancer Institute and Warren G. Magnuson Clinical Center, and others (see full list below).

    Investigators from the multicenter study on CFS/ME and XMRV/pMLV will discuss their findings and future directions.

    A live video will be posted below.

    For attendance at the event, members of the media should RSVP by 9:00AM on Monday, Sept. 17th to Nsikan Akpan (212-342-9051 | nea2107@columbia.edu) or Stephanie Berger, Mailman School of Public Health (212-305-4372 | sb2247@columbia.edu).

    When: Tuesday, September 18, 2012

    Press Conference begins at 10:30 AM (EDT)

    Who: W. Ian Lipkin, MD (Moderator)

    Center for Infection and Immunity (CII), Mailman School of Public Health, Columbia University

    Principal Investigator and Director of Center for Infection and Immunity

    John Snow Professor of Epidemiology

    Professor of Neurology and Pathology



    Harvey Alter, MD

    National Institutes of Health, Department of Transfusion Medicine

    Distinguished NIH Investigator

    Chief, Clinical Studies

    Associate Director of Research



    Mady Hornig, MD

    Center for Infection and Immunity, Mailman School of Public Health, Columbia University

    Director of Translational Research at CII

    Associate Professor of Epidemiology



    Judy Mikovits, PhD

    Mikovits Consulting



    Francis Ruscetti, PhD

    National Cancer Institute, Frederick National Laboratory for Cancer Research

    Head, Leukocyte Biology Section

    Senior Investigator

    Collaborating Research Groups:

    • Department of Transfusion Medicine, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD.
    • Mikovits Consulting, Oxnard, CA.
    • Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, Atlanta, GA.
    • Cancer and Inflammation Program, Frederick National Laboratory for Cancer Research, Frederick, MD.
    • Tissue Safety Laboratory, Office of Cellular, Tissue and Gene Therapies, Center for Biologics Evaluation and Research, Food and Drug Administration, Bethesda, MD.
    • Nova Southeastern University, Fort Lauderdale FL.
    • Miami Veterans Affairs Medical Center, Miami, FL.
    • Brigham and Women’s Hospital, Boston, MA.
    • Infectious Disease Clinic, Stanford University, Palo Alto, CA.
    • Fatigue Consultation Clinic, Salt Lake City, UT.
    • Levine Clinic, New York, NY.
    • Simmaron Research Institute, Incline Village, NV.
    • Department of Biostatistics, Columbia University, New York, NY.
    • Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY.
    • Center for Infection and Immunity, Columbia University, New York, NY.
    • Department of Molecular Biology and Microbiology, Tufts University, Boston, MA.
    Enid, justy and RL_sparky like this.
  15. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    Sasha and CJB like this.
  16. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    What..does...it...mean that they're having a LIVE PRESS CONFERENCE about this??

    Let the wild speculation begin!
    ukxmrv likes this.
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,480
    It's the negative results from the Lipkin study.

    [/speculation]
  18. Sasha

    Sasha Fine, thank you

    Messages:
    8,165
    Likes:
    7,061
    UK
    That sounds promising - "future directions" - at the very least there'll be some "future directions"...
    ukxmrv likes this.
  19. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    That's what I think too. What I don't understand is making so much hoop-la about it if they only have a negative result to report, one that only confirms previous and very reputable negative results. I'd just as soon they be low-key about it if that's the case.

    The reason for hoop-la may be that they found something else [but that doesn't seem likely considering the study design, and I don't think there are many left that believe there's a SINGLE pathogen] or....(2) to make sure Judy Mikovits is standing shoulder to shoulder with the other investigators and confirming that she agrees with the result. After all, wasn't that a condition of the study -- that all investigators should reach 100% consensus before publication?

    So my biggest question remains ... what else COULD they have found within the scope of the study?
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,480
    It could well be that they think CFS patients are more committed to XMRV as a cause than is truly the case, as the only CFS patients they are likely to have heard from in the last 12 months are those who are still committed to XMRV as a cause of CFS. If they think they've got a roughly representative sample, then they will think that these results are a big deal. (Not to do this study down - it is good that a really thorough blinded study was done, it just would have been nice if this was done three years ago instead).

    I think you're right about them wanting Mikovits to be there to, ideally answering questions as well. With he publicly accepting that her initial work was flawed, and explaining how she knows this to be the case, it will be hard for anyone to keep acting as if XMRV is a likely cause of CFS.

See more popular forum discussions.

Share This Page