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!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

Discussion in 'XMRV Research and Replication Studies' started by mingo, Jun 22, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Sure wish it included the numbers they found. I didn't know if "confirming Lombardi's study" refers to the 4% of healthy controls or the 67% of CFSers. Surely, the numbers are not exact. Would love to know the details: what blood did they test, fresh or frozen, any WPI samples, what rate did they find in CFS, how many in study, what amount in healthy?

    Well, although we don't know the exact info, his comment of association with CFSers as strong is real good news for us. And of course, it is in blood supply.

    We will know soon. It will be published soon. I'm giddy. And I have so much hope for my fellow patients who have been sick for decades and my fellow comrades in the UK. Finally,

    How ironic that it is a couple of Dutch reporters that got this info. No matter what you say about the reporting in the past in that country, got to hand it to them for doggedly following this story and getting leaked info. Hats off. Congrats you two. Thanks for not letting this go. Will you be getting comments from the scientists that had such derogatory comments against the WPI study?

    "Oh, NIH, FDA, you can't trust their studies. I bet they have contamination."

    LOL LOL LOL That would be classic. It's like being in a car on the train tracks and the train just keeps coming and coming and you can't make it stop.

    And how embarrassing for the CDC. They didn't get it right in 1980s and didn't get it right this time either. And they are supposed to be experts in infectious disease. Don't you hate it when you put egg on your own face?http://www.youtube.com/watch?v=7kUnq8DDN7I

    Hey, since so many of us (not me) got sick in the 1980s, I think the following song is appropriate. Let's Party. It's time to have the biggest party we'll every have. Who can dance like the man in purple?

    http://www.youtube.com/watch?v=pnuijDieOvY

    Tina
  2. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Wow!!! Finally some validation. Now we can move forward...Yeah!!!
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Zagreb

    Zagreb? Did we know about this? Croatia? Was this top secret, in that no one but the invitees even knew it was happening? Why Croatia of all places?

    Tina
  4. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    The Zagreb workshop was a month ago...the 26th 27th of MAY!

    So when he said the paper would be published soon....that was a month ago now.
  5. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    No, the press release says that Ortho just contacted Harvey Alter today and this was told them today...
    they havent got this leaked information for all that time...
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Yeah, Kurt, you are right. Although he confirmed a publication is coming soon, you could be right. Until it is published, it can be pulled, for whatever reason.

    But, to me, this guy at NIH says their study confirmed it. And he would know.

    So unofficial or official, published or not, a government official in the know says that FDA and NIH confirmed it with their own study.

    Notice, this is no confusion of what was said. These are quotes from the lecture, either taped or written.

    Tina
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
  8. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    You mean the rumor YOU started?
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Confused, who released this press release? Ortho? A health journal releases a press release that their journalists have a story. Why don't they just do the story.

    What am I missing here?

    Tina
  10. Elliot

    Elliot

    Messages:
    77
    Likes:
    0
    Leicestershire, England.
    Agreeing with Kurt, I got really excited but then saw that it has not been confirmed yet/papers have not been released. It's good to know they're in the reviewing process though finally. And if these leaks are true then it's great news for future potential treatments for us all! :)

    Lets just hope this is confirmed and we can finally know the root cause of CFS/ME!
  11. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    the WPI on there facebook page write, FDA and NIH confirm XMRV findings thats enough for me!
  12. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    IPFA/PEI 17th Workshop was on May 26th and 27th. Here's the calendar....
    http://www.ipopi.org/update/calendar.html

    The reporters may have just gotten the info....but the workshop was a month ago....that's just a fact.
  13. Elliot

    Elliot

    Messages:
    77
    Likes:
    0
    Leicestershire, England.
    Is it right for the WPI to leak information like this by the way? Just wondering as leaking a peers work sounds a little..yeah.
  14. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Journalists certainly can’t quote the guy word for word, he could take them to court. And even if the FDA or NIH try to pull it now, the word, and quotes are out…we all know.

    And the WPI wouldn’t post it on their FB page if it wasn’t true. Surely they would know if someone has used their methods…they would have had to show them first!!!
  15. CBS

    CBS Senior Member

    Messages:
    1,362
    Likes:
    231
    Western US
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Elliot, I don't think it is a WPI press release. Someone else has put this out.

    Tina
  17. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    we have got to alow our selves to believe this.
  18. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    it was all over facebook before it appeared on wpi page , so please dont accuse wpi of leaking this
  19. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    According to reporting by ORTHO magazine, a paper is ready to be released:

  20. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    thats right, but the info that the paper will soon be published was told today and not a month ago, thats what I meant to say

See more popular forum discussions.

Share This Page