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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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XMRV Workshop Program

Discussion in 'XMRV Research and Replication Studies' started by Cort, Aug 31, 2010.

  1. Rrrr

    Rrrr Senior Member

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    diana sent another email and added this:

    As to the webcast, it will be broadcasted live, and then after a few
    days it will be posted again on the website. So it may not be available
    for 2-3 days.

    Kind regards,
    Diana
  2. Cort

    Cort Phoenix Rising Founder

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    No they said This is for academics and pharma only - Patients are not allowed. Basically I shouldn't have asked and just gone. After I asked my cover was blown anyway. I doubt I would have got it.

    I would love to be Mindy's cameraman....I just get one trip to DC this fall (my brother lives there) so it looks like it will be the CFSAC meeting. Several patients are going, though, and we should get a good report.

    Great job, Diana - now that's exciting - particularly the Q and A part......
  3. jace

    jace Off the fence

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    Pictureofhealth asked
    I worked in an AIDS hospice in the early 90's. The answers are yes, and yes. Not so many people in the west get AIDS these days. Won't it be great when we can say the same for ME?
  4. August59

    August59 Daughters High School Graduation

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    What time will that be EST?
  5. Cort

    Cort Phoenix Rising Founder

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    My take on the program from the XMRV Buzz page

  6. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks Jace that's really helpful (my background was in Coronary Care - aeons ago of course).
    Thank goodness we have HIV/AIDS retrovirology experts as well as our ME/CFS doctors involved now - this is a dream scenario for us - that should make the unravelling of the commonalities and the distinctions between the 2 illnesses a lot smoother and quicker process!
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks Cort - its really helpful to see the breakdown presented like this on your Buzz page.
  8. shrewsbury

    shrewsbury member

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    Thanks filfla4 and Rrrr - this is so exciting.
  9. Bob

    Bob

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    Yes, it makes me wonder if they have found evidence for XMRV running in families in this study... If my memory serves me right, the WPI were interested in testing family members, and not just patients, for this study.
  10. August59

    August59 Daughters High School Graduation

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    This appears to be the place where the people with negative studies are going to get "schooled" on how to do it right and move on!!!
  11. urbantravels

    urbantravels disjecta membra

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    Cort, next time say "press" and see what happens! Surely they're allowing press, if Mindy's going. Probably also a certain Wall Street Journal reporter we know....
  12. Rrrr

    Rrrr Senior Member

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    5:15 pm EST
  13. HowToEscape?

    HowToEscape? Senior Member

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    I tossed this out before, but I hope someone in CFIDS/ME/{other subgroup} activist circles is keeping in mind that research on one or more virii and research on how to cure us may not be the same thing. Whatever's wrong could have set off a dysfunction which doesn't resolve itself if the pathogen circulating in blood can be controlled, or even if the pathogen hiding in some organs can be flushed out. It could be that the state of a complex system is disrupted and become stable in the new, malfunctioning state. e.g. : virus could be treated, but an autoimmune disease remains. It can still be cured, but it requires a deeper insight into how and why it is broken.

    Contagious virii are sexy research topics - people think "hey, I could catch that". But diseases affecting "definitely not me" need a campaign to get recognition, respect and Big Science based intervention. Big Science isn't necessarily the first place to look to maintain one's health, but for things such as polio, HIV and possibly this one they have the mojo.
  14. Daffodil

    Daffodil Senior Member

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    howto..i agree. perhaps in some people, the damage is a different sort; the virus didnt affect certain cells or go deep enough, but i have been on the drugs a long while now and am still getting worse pretty quickly.

    a researcher told me there is always the possibility that the env protein of the virus is fusing to xpr1 and creating problems that way, in which case they will have to find a way to stop viral gene expression - very hard.
  15. Rivotril

    Rivotril Senior Member

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    Cort: from your buzz:

    mikovits did include the word infectious already in the science addendum :

    Detection of an infectious retrovirus, XMRV, in blood cells of patients
    with chronic fatigue syndrome

    http://www.landesbioscience.com/journals/virulence/article/MikovitisVIRU1-5.pdf

    so why would it this time mean anything special?
    there could be new things in this new study but the title doesnt tell us because same title style was used in addendum also
  16. Bob

    Bob

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    I agree with your thoughts HowToEscape... Sometimes I prefer to stay optimistic about the future and think about the positive possibilities rather than the negative possibilities... but i think that a good deal of realism is also helpful.
    But, yes, even if they can stop the virus replicating, that doesn't mean a cure. But maybe it might ease the symptoms over time, and stop us from getting worse or having relapses. It might even give the body a chance to purge itself of the virus, if no further viruses are being created.
    There's a lot of questions to be answered, and a lot of research to be done.
    Once they start doing some anti-retroviral trials, then we might start getting some answers.
    We also need a bigger study, on MLV-related viruses, to show how much of the ME population is actually infected with MLV-related viruses.
    So far, a lot of people on the forum are testing negative for XMRV... So this retroviral research might not be relevant to a large number of us (I haven't been tested yet, so I don't know my status). But it might be possible that some people, who have tested negative to XMRV, would test positive for Alter's polytropic viruses rather than XMRV...
    Judy Mikovits has now detected more than one type of XMRV, and also polytropic MLV-related viruses (can we call them PMRV's?) since the initial Science publication, so the evidence for retrovirus infection is increasing and getting stronger all the time.
  17. VillageLife

    VillageLife Senior Member

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    I'm really looking forward to hearing about Professor De Meirleirs work, sound like he has proven causality!?
  18. Cort

    Cort Phoenix Rising Founder

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    Didn't know that....When I looked at the titles of the other presentations nobody mentioned infectious - it stood out for me.
  19. Cort

    Cort Phoenix Rising Founder

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    That would be a big step towards that; it would certainly demonstrate XMRV is not an innocent bystander. It'll be interesting to see how strong the immunological signature is - that certainly sounds strong. It hasn't been easy at all to find an immunological signature for CFS as a whole but if you just have XMRV infected CFS patients that's a different story. Dr. Mikovits stated she's found a signature as well. If they are right then that's a BIG step for XMRV.
  20. VillageLife

    VillageLife Senior Member

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    Yep Im in this study and the word Infectious stood out for me too.

    I think one of the ones for HIV...is the Cd4 count. not sure it will be that for xmrv.

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