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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. Esther12

    Esther12 Senior Member

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    Actually - some of the possibilities Mark raises could require a delicate press release.

    What if XMRV was found in 5% of the population, but not to a greater degree for CFS patients? They'd be announcing 5% of people had a retro-virus doing unknown damage, and with unknown transmission. They wouldn't have been able to take action with blood supply at that point because it's not really practical to start testing every donor (is it?).

    Maybe it's an even more messy result, with them finding something similar to XMRV?

    There are all sorts of possibilities at this point. It could well be that they're going to validate the WPI's findings entirely, but my grumpy gut is still saying otherwise.
     
  2. rebecca1995

    rebecca1995 Apple, anyone?

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    Riv...this was my original reasoning, as well! Huber = negative, CDC = positive. But if the CDC study did find XMRV in ME/CFS--to a greater or lesser degree--why didn't Unger mention XMRV even once during her CFSAC presentation?

    And won't Jerry Holmberg look like a fool for stonewalling at CFSAC, if it comes out that he was privy to positive CDC results?

    I don't know...I'm worried now. :worried:

    Hey Bob...when you're finished breathing into the paper bag, pass it over to me, would you? Although this light-headedness is sort of...nice.... :Retro wink:
     
  3. Robin

    Robin Guest

    This isn't the HHS working group study, is it? It's just the CDC study with their phone-cohort, right? Do we know anything about what test they used?
     
  4. bullybeef

    bullybeef Senior Member

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    The following was posted elsewhere, but is pretty relevant here too:

    http://www.hhs.gov/advcomcfs/meetings/presentations/cfsac_testimony_5_10_2010_anonymous_1.pdf

     
  5. Bob

    Bob

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    *passes paper bag*

    :eek:
     
  6. JT1024

    JT1024 Senior Member

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    Wow bullybeef....that is quite the post.

    Extremely scary but not without warrant.

    BTW.... I need that paper bag as well! I think my blood pressure has tanked....
     
  7. Bob

    Bob

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    I would go with (c), but possibly even (d)...
    If they can detect XMRV at all (and I believe that JM has been working very hard in collaboration with them so that they can)... then I'm sure that they would detect XMRV in their CFS patient samples at a far higher level than the normal population... but maybe not at quite such high levels as the WPI patient cohorts (i.e. not quite 97% but still very high).
     
  8. Esther12

    Esther12 Senior Member

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    Stuff like this does play into my negativity. People who should be in the know don't seem to be acting like their aware of a CDC study confirming the XMRV/CFS link.

    We've not got much to go on here, but as we're reduced to reading tea leaves, I'd tend towards thinking that the CDC study is not going to be a clear win for XMRV/CFS - while being careful to remember how little that belief is based upon.

    (I should really just read a good novel for a week, and accept that we'll know for sureby the end of it. It's hard not to speculate about these things though).
     
  9. Bob

    Bob

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    *passes paper bag again*

    :eek:
     
  10. leaves

    leaves Senior Member

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    Another possibility is that they find it a lot, but not (much) less in the cfs population
    Aaaaaaaaaaaaaargh !!!
    Doesn't anyone know ?? Please....
     
  11. Bob

    Bob

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    It's horrible waiting for something like this isn't it!
    I think we should all go on holiday together for a week so we can forget about it... somewhere tropical... we all deserve a nice holiday anyway.
    Shall I see if I can book a sleeper coach for us all?
     
  12. VillageLife

    VillageLife Senior Member

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    Its possible they have done this because in a way they have kind of prepared us now! We are all ready for the news and the shock wont be as huge, because we now have a week to prepare mentally.
     
  13. hensue

    hensue Senior Member

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    when has the CDC ever been quiet??? Some one out there knows what is going on!
     
  14. Navid

    Navid Senior Member

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    *
    A candidate, potentially high risk biological product frequently used for infertility
    treatment is human chorionic gonadotropin (HCG) purified from urine of pregnant women
    (uHCG). Currently the US pharmacopoeia for urine HCG does not include testing for the
    bloodborne pathogens HIV-1 or hepatitis C nor for viral inactivation/reduction, while in contrast
    the British and European pharmacopoeia has called for these safety measures since 1997. It is
    important to note that many of these products (also urine derived lutenizing hormone, uLH) were
    marketed by the early 1980's, and thus, were exempt from newer regulations introduced later.
    Recombinant forms of HCG and LH peptides were introduced in the late 1990's and do NOT
    have the same infectious disease risk profiles. The recombinant forms (rHCG and r LH) may
    have been favoured in the UK and Europe due to higher inherent risks of BSE contaminated
    donors. Thus, in the UK and Europe, the spread of infectious agents, possibly including XMRV,
    through uHCG and/or uLH may have been minimized due to the use of alternative safer
    recombinant products or via the introduction of higher safety standards for uHCG/uLH. It would
    be additionally useful to restrict the size of the urine pools to minimize risk, as has been achieved
    for plasma products.
    I have already raised the issue of urine derived human chorionic gonadotropin (uHCG)
    used for infertility treatments and for cycles of "in vitro fertilization" as being potential candidate
    sources of XMRV for the CFS-ME



    wow..wow...wow....

    i became ill after receiving hcg injections during the ivf process.....i got my baby, but maybe xmrv in the process. life really is full of twists and turns : )
     
  15. JT1024

    JT1024 Senior Member

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    Just a quick thought (as I leave to work in a community hospital lab, including blood bank!)...

    If they release news of XRMV in the blood supply and have no test in place for blood already in the system and being transfused today, what do you think people are going to do?

    Here is is a holiday weekend... lots of parties, car wrecks, etc. People are going to need transfusions to stay alive. That being the case, the possibility that someone would get blood positive for XMRV would be high.

    Why ruin a holiday weekend here in the states..... just a thought.... got to run!
     
  16. rebecca1995

    rebecca1995 Apple, anyone?

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    Let's start with the assumption that the number of CDC positives will be at most a quarter of what WPI found because the empiric definition yields about four times as many "CFS" patients as Fukuda/CCC, give or take.

    So the prevalence of XMRV in the CDC study will probably depend on what tests were used. If the study is PCR-only, I would expect at most 16-17% of the CFS cohort to test positive. (1/4 x 67% [Lombardi et al positive rate])

    If it used the additional three tests that yielded the unpublished 98% positive rate, reported at last year's CFSAC, I would expect ~24% to test positive.

    How impressive those numbers look will depend on positivity in controls--a figure that depends in turn on how CDC chose controls. Say they picked a lot of contact controls and get a number as high as 10-15%. That would sink a PCR-only study in terms of establishing XMRV as specific to CFS.

    Or, best case scenario, say they get the same number as WPI-- < 4%. In that case, the CFS cohort would have XMRV at 4-6x the rate of controls--a reason for the CDC to hire a bunch of English majors to spend a week writing the press release we've been awaiting for 25 goddamn years.

    [Edit: I'm assuming CDC used the empiric definition, but who knows? They may claim to have used Fukuda--as Erlwein et al did--or even CCC to prevent us from crying foul.]
     
  17. HowToEscape?

    HowToEscape? Senior Member

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    "Given the potential threat to the US GDP and the economy; due to workforce loss, loss of tax revenues...."

    Wouldn't that be potential benefit to the economy as a previously untreatable, disabling disease is attacked and treatment gradually moves toward something effective? There's a small army of people who were formerly productive now working at dramatically reduced capacity or unable to do much of anything. Change them ... err, us, from being in the trash basket to aggressive treatment and this army will gradually get back to work... and paying tax.
    Discovering the or a cause of a disease does not make people disabled; failing to address and treat it head on does.

    Even insurers would eventually benefit, since those with good enough legal support and financial tenacity eventually get some fraction of the insurance they paid for, while an effective, early treatment program might have many people going out on short-term, getting aggressive medical treatment, enforced rest until ready and then back to full time work. That's a lot cheaper than LTD. That's down the road; the insurers may be looking at the next few quarters not what's in their long term interest. They certainly don't care about their reputation.
     
  18. bullybeef

    bullybeef Senior Member

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    I wouldn't put it past a government to not want to ruin a public holiday for the greater good!

    Seriously though, you would like to think the CDC would have a plan in place whether they have found XMRV or not. And they probably knew their results months ago when they submitted there paper in the first place. Maybe they waiting for the FDA to approve the WPI blood test. Like what’s been suggested, they can’t announce XMRV to the world without being able to screen for it first, can they?

    If XMRV proves to be the big one, would Obama make a public address?
     
  19. hensue

    hensue Senior Member

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    I dont think so no public address! We cant even get an oil spill cleaned
     
  20. hensue

    hensue Senior Member

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    Why was this put in the last sentence of this article? Like it was not important, I think it is more stalling.
     

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