1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Jan 18th Webinar with Dr. Lucinda Bateman

Discussion in 'General ME/CFS News' started by George, Jan 11, 2010.

  1. julius

    julius Watchoo lookin' at?

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    Sing,

    The Japanese Red Cross screened a bunch of blood, I think it was about a year ago. They found 1-2% had xmrv. I've seen it come up in a few different places. I don't have a link right now, but I'll look around. I thought it was kind of funny all the concern over the IC study suggesting xmrv might be limited to America when we already knew it was in Japan...and therefore almost certainly worldwide.
  2. rebecca1995

    rebecca1995 Apple, anyone?

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    Northeastern US
    Oh dear...I just got this email from the webinar organizers:

    Too bad...I only had the energy to watch part of it live.
  3. _Kim_

    _Kim_ Guest

    The research was referenced in the IC study, but it came from the Cold Spring Harbor Retrovirus Symposium and it does not appear to have been published in a journal.

  4. CJB

    CJB Senior Member

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    I'm so grateful to the doctor for the presentation. Even though there may not have been anything really new covered, I never get tired of hearing an interested ,informed professional discuss the topic. I find it tremendously comforting.

    The most promising information was her statement that the Federal Blood Task Force has been working on the testing and their involvement will "accelerate the development" of standardized tests. Standardized tests will likely be paid for by insurance companies. That will be a huge step forward. Although they can't mention specific trials or tests going on, it is apparent that a whole range of researchers are interested in XMRV and are working on it. That's promising as well.
  5. Sing

    Sing Senior Member

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    Thank you, Julius and Kim, for answering my question about the Japanese study.

    Sing
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    I remember Coffin mentioning that the antibody test is not considered as reliable because it depends on a normal immune system response. If someone is having problems in the immune system, they may have the virus, but no antibody response to it.

    Also, and correct me if I am wrong, folks, could it be the virus goes and hides in certain cells sometimes, or in stages, and the antibodies are in the body, but since it isn't actively fighting a replicating virus, there isn't as many antibodies being made. I guess my question is whether the level of antibodies in the blood rises when there is an active infection, meaning replicating virus. Of would the level of antibodies be the same in the blood whether the virus is dormant, hiding and laying low, or if it is replicating.

    Tina
  7. flybro

    flybro Senior Member

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    pluto
  8. CJB

    CJB Senior Member

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    Great find! Glad someone got it recorded. I'm going to watch again.
  9. talkingfox

    talkingfox Senior Member

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    Thanks for posting this! I found the breakdown of the Alan and Kathy Light study pretty intriguing.
  10. _Kim_

    _Kim_ Guest

  11. shrewsbury

    shrewsbury member

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    me too

    thank you for doing this LF
  12. Martlet

    Martlet Senior Member

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    Yes!

    Thank you, flybro!!!
  13. jspotila

    jspotila Senior Member

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    Clarifications

    Both Dr. Vernon and Dr. Mikovits are serving on the same HHS XMRV task force. My understanding is that this group is coordinating the federal effort on XMRV right now. They will test WPI samples and banked samples from the blood supply before determining whether the whole blood supply needs to be screened. From a summary article:

    The Alan and Kathleen Light study write up is here: http://cfids.org/cfidslink/2009/080503.asp
    Abstract in the Journal of Pain is here: http://www.jpain.org/article/S1526-5900(09)00574-4/abstract

    The samples from this study, funded by the Association, will be tested by XMRV expert Dr. Ila Singh for XMRV. The hope is to see if there is any correlation between the marker profile in the Light study and the presence of XMRV.

    Dr. Bateman's slides can be downloaded here: http://www.cfids.org/webinar/xmrv-slides-jan2010.pdf
    Dr. Bateman has agreed to present an updated talk sometime in February, hopefully with additional news and data.

    Although the Association's attempt to record the webinar failed, another attendee did video the whole thing and it is available on You Tube in nine parts, starting here with part one.

    Finally, Dr. Vernon mentioned the Association's BioBank. This is really exciting, and more information will be available soon. As Cort pointed out, already having samples banked and ready to go will save SO much time for researchers. Our hope is that this effort (which will take money!) will lead to a faster pace in CFS research and more standardized cohorts, etc.
  14. Lily

    Lily *Believe*

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    Hey flybro, please tell CToT thanks from me too!;)
  15. starryeyes

    starryeyes Senior Member

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    This is awesome news Jspotila! A couple of months ago I wrote to my Congressman and to my Senators and alerted them to the XMRV finding in CFS and told them we needed to start testing our blood supply.

    Thank you for the YouTube link too. :victory: :hug: :victory:

    tee :sofa:
  16. The webinar will soon be up on the CFIDS Association of America website.

    Until then you can view the files individually on their youtube channel in the 'favourites' section.

    Link
  17. starryeyes

    starryeyes Senior Member

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    lol! I had to turn up the brightness on monitor to see it. That's so funny! :D
  18. dsdmom

    dsdmom Senior Member

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    Full article

    So I was able to access the full article - or really a wonderful friend of mine was able to - and I will post it here. Hope I don't get in trouble for this. :ashamed:

    Hope this works...first time attaching something in a post.

    Attached Files:

  19. _Kim_

    _Kim_ Guest

    dsdmom - Thanks so much for getting your hands on that article. You did a great job for your first attachment! I've put a copy in the Library.

    We aren't supposed to republish full text articles that are not Open Access (copyrights), but since there were so many of us that wanted to read the entire piece, I'm going to leave your post AS-IS for now. I probably will edit out the pdf file at some later date.
  20. dsdmom

    dsdmom Senior Member

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    Thanks Kim! I figured we weren't really supposed to be posting full text on things that are not open access but I know how badly I wanted to see this so figured others might as well...

    Now to print off and try to understand a little bit:Retro smile:

    Oh and Kim - you mentioned the "Library" - not sure I know where that is. Could you direct me? Thanks!

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