1. Patients launch a $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!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

CDC replication study delayed in order to prepare a press release?!

Discussion in 'XMRV Research and Replication Studies' started by awol, May 28, 2010.

  1. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
  2. Abraxas

    Abraxas Senior Member

    Messages:
    129
    Likes:
    0
    As this whole thread seems to be based on the above couple of sentences from the buzz page, I'm also curious to know who you mean by 'We' Cort? If you are able to tell us :Retro smile: thanks.

    I'm not able to keep up very well, but did we know the CDC study was supposed to be due out this week? Anyone?
  3. Forbin

    Forbin Forbin

    Messages:
    222
    Likes:
    178
  4. Bob

    Bob

    Messages:
    7,497
    Likes:
    8,735
    England, UK
    lol, I love that message Tina! ... unfortunately this happens to me about once a minute these days! :(
  5. Bob

    Bob

    Messages:
    7,497
    Likes:
    8,735
    England, UK
    Tina, that all makes a lot of sense...

    Well, maybe they have now got a standardised test ready... the WPI have been saying for ages that they are working on a standardized test, and they've been saying that it will be ready 'soon' for months now... So maybe they will release this test alongside the CDC study results...
    This is all just pure speculation of course...
    But I reckon that the WPI must have been collaborating with the CDC, even though they haven't said much... I know that they've been working together, at least a little, with XMRV, and I think that the CDC would want to be involved in establishing a standardized blood test, alongside the WPI.
  6. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    Thank you, DisautonomiaXMRV for your excellent post! You not only make very plausible points, but you reviewed the relevant facts in the whole situation.

    Sing
  7. flex

    flex *****

    Messages:
    304
    Likes:
    0
    London area
    Oh no, I just read this after a nights sleep!! Have I had the bag all this time? GULP!!! Are you all still alive, I would hate to have blood on my hands.

    May I propose a simple solution, another bag, then we could have a two bag state and peace and prosperity could be road mapped for the future of all. We will need a chairperson and a committee and of course some researchers and probably a bag response team. OH its getting complicated now...breath ...breath....wheres the damn bag
  8. subtr4ct

    subtr4ct Senior Member

    Messages:
    112
    Likes:
    0
    re: the possibility of a new test being available very soon -- I notice that the vipdx website has been gone for couple of days now. There is an (automatically generated?) link farm/domain sales type page there currently. Easily could be just a coincidece
  9. Bob

    Bob

    Messages:
    7,497
    Likes:
    8,735
    England, UK
    lol

    well, it's ok for you flex... you just passed out and got a good night's sleep... But you had the bag! ... the rest of us couldn't get any sleep, at all, with all the worrying and the fretting and the anticipating and the hyper-ventilating!
    :Retro wink:

    Oh no, here we go again... breath, breath... pass me the bag!........... :eek:
  10. Bob

    Bob

    Messages:
    7,497
    Likes:
    8,735
    England, UK
    curiouser and curiouser...
  11. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    I believe the same thing happened when they changed their testing last time -- from PCR and culture, to just culture. Interesting!
  12. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    meirleir told that a reliable test would be out in a few week
    maybe this is the antibody test thats coming via Vipdx
    But to take a site down just to update your test sheet and just some new info?
  13. MaryAnn

    MaryAnn

    Messages:
    44
    Likes:
    0
    To those who asked if HIV was known prior to a blood test, the answer is yes. I remember that I thought my baby would need a transfusion and was very scared because they could not test for HIV yet. This was Dec 1983. The panic was scary so perhaps they are looking for a reliable test first. But, I thought I saw on this forum something about Dr. Judy/Whittemore recommending the US adopt the same procedure that EU uses clean blood because it was found effective for XMRV (or am I incorrect on the implications)?
  14. anciendaze

    anciendaze Senior Member

    Messages:
    833
    Likes:
    780
    standard bureaucratic behavior

    While I've only skimmed this topic before this post, I've seen enough bureaucracies to know how they handle announcements and press releases. Everyone here seems to accept that the statement about preparing a press release is correct. From past experience, I can say there is a high probability the real reason for delay is to run the news up the chain of command before it goes public. (Making management look ignorant or incompetent is a very bad career move.) The length of delay in such cases is a good measure of how high the warning goes and how much negotiation is required before release. This means the implications go beyond earlier expectations.

    "Insanity in individuals is something rare - but in groups, parties, nations and epochs, it is the rule."
    Friedrich Nietzsche
  15. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    My gut feeling

    is telling me they found some association between xmrv and cfs. I'm thinking they put the german positive study on there web site as a kind of preparation to there results.
    I bet they will be taking the angle of yes we found xmrv at a higher rate than in controls but this could mean that people with CFS have something wrong with there immune system that allows them to have xmrv. They will use the German study finding XMRV at a higher percentage in immunocompromised patients to make there point and prevent a panic of sorts.
    Then they will say much more study is needed to determine if it is causal for some patients or a select subset of patients.
  16. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    I'm going with bakerscape's gut feeling! :D
  17. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    619
    NY
    I'm going with nothing until the report is actually out. Speculation is fruitless, although I will say that I find it *extremely* difficult to believe they will say anything to validate CFS as a legitimate disease regardless of what they actually find. Is that a speculation? I guess just a cynical belief. I think the delay is likely due to their attempts to cover their butts in advance and make sure they aren't saying anything either to cause a panic or to validate CFS. Oops, I guess that part is speculation. :p
  18. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    yes i'm with Anciendaze & Tina, makes sense to me
    :)
  19. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    594
    Likes:
    926
    Mercer Island Wa
    Very Strange Way of Changing content on a Web Site

    It's rather somewhat odd for a business with a web presence to take their entire domain down. You can keep at least the main page online and subsequent lower level pages can be place under construction. You can rebuild your entire site off line and then port it over at once without any disruption on the domain site. Seems just a really strange way of doing it especially when there are links to other diagnostic labs on the main page....very strange.
    :eek:
  20. acer2000

    acer2000 Senior Member

    Messages:
    560
    Likes:
    191
    I was just going to say this. Typically you only see this when someone relinquishes their domain name. If they were to stop offering the current testing package (but not have info about the new test), all they have to do is remove the section about the test and say "check back soon" or something like that. And what about the other tests that VIPdx (nee RedLabsUSA) used to offer like NK cells, cytokines, etc..?

    Could it be that those other "indirect" tests aren't necessary anymore because they found the cause? And they closed up shop because they licensed the XMRV tests to a national lab? Eh... I wonder, or is this just an amateur web hosting mistake?

See more popular forum discussions.

Share This Page