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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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NIH/FDA XMRV Paper by Dr. Alter Out!

Discussion in 'XMRV Research and Replication Studies' started by Esther12, Aug 23, 2010.

  1. George

    George waitin' fer rabbits

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    Yeah, (sheepish grins) I think we broke PR there for a while. It looks like the early reports are placing and emphasis on the fact that this is no big deal, just some MLV's ( which nobody is going to know what they are) and there may or may not be a a connection to those tired people. Butttttt

    As Cort pointed to Mindy's Blog which is much more detailed and states more facts in regards to MLV's and Dr. Alter's take that XMRV is highly mutative so they are looking at MLV sequences when they look. Same virus just different or more mutation than first reported. Alter sounds convinced that this is "it" for CFS at least. The good news is we do know that there are a lot of other studies that have been done that will take us in the right direction down the road.

    I'm just tired, I was hoping this would be the big turning point in the media ya know? The opportunity to take article after article in to my doctor and say "HA, there ya go" (grins) It's been nearly a year since the first study and I'm tired of media management and I'm tired of healthy people making discussions that affect my life. So I'm cranky. (grins) Smiling, but cranky.
  2. pine108kell

    pine108kell Senior Member

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    Exactly, this was published in a peer reviewed science journal, not a blog.
  3. Mark

    Mark Acting CEO

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    I think it's the subtleties of the language used in the press release. It is still going to cause a big splash within the scientific community, and it'll be the huge step forward in terms of the science that we were hoping for. But the cautious language and muddying of the waters re:MLVs vs XMRV look to me like it won't yet spark the media interest we were hoping for.

    I rather suspect that whether something is a "related MLV" or an "XMRV variant" is something of a question of where you draw the line, somewhat arbitrary. By saying that what they detected wasn't really XMRV as such, they excuse all the negative studies, and also downplay the replication of the WPI - it looks less like 2 papers that both found the same thing, and more like two papers pointing in a similar direction. Just feels a bit less conclusive, even though when you think about it, it isn't really.

    In short, it's been spun so that only those in the know will realise what it means, giving them more time to prepare.
  4. V99

    V99 *****

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    What criteria was used? Was it Fukuda?
  5. HowToEscape?

    HowToEscape? Senior Member

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    "It's a retrovirus, people, doesn't that bother you AT ALL?"

    Edit: My post below isn't quite germane to the topic of the press release and response. I'm leaving it up fwiw, just to vent. A bit.


    People are concerned over things that either

    i) catch their imagination so that they feel like part of it - "ground zero mosque" etc
    or
    ii) affect them personally.

    Items of type ii have 90% share of attention. e.g. HIV - if one has a life or has teenagers one might possibly catch it. xmrv? for most people, that's "whatevs" ... "if it's been around 20 years and I haven't caught it yet, what's the problem"?

    Not everyone thinks that that, but if you randomly pick someone off the street and read their mind - not words on camera, as people know what they're expected to say - you'll get a shrug about most things they don't have a personal stake in.

    Beyond that this really is a complex, confounding disease. It could also be that it is XMRV==CFIDS/ME, full stop, it could also be that v+w+xmrv==you get sick, or some multiple factors. But whatever xmrv does I don't want it sneaking around my cells!
  6. LaurelW

    LaurelW Senior Member

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    :Sign Please:Could somebody please explain the difference between MLVs and XMRV? I don't get it, even after reading Mindy's blog. Also, what the possible implications of this are.
  7. LJS

    LJS Insert Witty Comment Here

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    Awesome, Thanks for the link!

    EDIT: I figured I would post the abstract up for fun

  8. V99

    V99 *****

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    If the new term HGRAD is the mum, then XMRV and MLV's are the children. In other words the same type of retrovirus, i.e. a gammer retrovirus, but different branches from this, and all from mice.

    This is no different then finding XMRV
  9. anne_likes_red

    anne_likes_red Senior Member

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    *likes* :)
    Thanks V99.
  10. alex3619

    alex3619 Senior Member

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  11. V99

    V99 *****

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    because there is an XMRV, and there are MLV's. XMRV would probably be thought of as another MLV if it had not come first.
  12. Cort

    Cort Phoenix Rising Founder

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    Here's what I wrote in the XMRV Buzz Page

    Its strange but think its going to all work out.

  13. alex3619

    alex3619 Senior Member

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    hi, last para of paper prior to methods details:

    Finally, the finding of MLV-related virus gag gene sequences
    in nearly 7% of healthy volunteer blood donors in our study and
    of XMRV in 3.7% of healthy controls in the study of Lombardi
    et al. (3) raises additional issues. The possibility that these agents
    might be blood-transmitted and pathogenic in blood recipients
    warrants extensive research investigations of appropriately linked
    donor–recipient cohorts.
  14. Wasbeer

    Wasbeer

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    Clinical trials now!
  15. Sunshine

    Sunshine Senior Member

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    Nice find Alex3619.

    ''Appropriately linked donor–recipient cohorts.''

    Time for this to happen ASAP.

    When it comes out positive, we'll have another HIV-like crisis on our hands.

    So much easier to tell people to do CBT and exercise and blame them though isn't it?

    Not that anyone would be silly enough to do that.........
  16. Quilp

    Quilp Senior Member

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    Oh there should be trials alright; I believe the Hague will do nicely.

    Kind regards, Mark
  17. VillageLife

    VillageLife Senior Member

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  18. George

    George waitin' fer rabbits

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    It really strikes me how long we have had to wait for information that's been around for months.
  19. Wasbeer

    Wasbeer

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    Too bad that the US still doesn't cooperate with the International Court of Justice in The Hague ;-) I would like to nominate a few people for a vist to the Scheveningen Jail :)

    But that's not the kind of trials I was talking about. Can't believe it that the CEO's of big Pharmaceuticals are already downplying demands for clinical trials. They should be jumping for it! God knows we've waited long enough....
  20. V99

    V99 *****

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    Holmes criteria would have been used in 93!!

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