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Lipkin bad news folks

Discussion in 'XMRV Research and Replication Studies' started by pollycbr125, Sep 17, 2012.

  1. currer

    currer Senior Member

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    I bet there will be a little flurry of triumphalist psychiatric papers to bear in the next few weeks.:mad:

    And the Science Media Centre Press release.
  2. Omar88

    Omar88 Senior Member

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    I had a DREAM that today will show something ! i was wrong we are still in the same page
  3. Snow Leopard

    Snow Leopard Senior Member

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    That would be nice, but I'm not sure. I am glad of the negative association with CFS though. (I don't fancy the idea of a retrovirus infection).

    In terms of the story, the fact is that there are a variety of MLV viruses, so there is more than one contaminant source out there. Given how often they have shown up in labs recently, given that they have demonstrated that they can infect human cells, at the very least there are scientists at risk...
  4. Firestormm

    Firestormm Senior Member

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    No. It seems that nobody can find it. I presume it hasn't been posted for some reason (mouse in the machine I suspect) :)

    Research 1st have just posted this: http://www.research1st.com/2012/09/18/xmrv-study-links/

  5. VillageLife

    VillageLife Senior Member

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    So it was all just a mistake ???

    The prostate cancer papers, all Dr O'Keefes findings? All a mistake??
  6. Adamskitutu

    Adamskitutu *****

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    But they haven't been able to rule out any OTHER retrovirus (including ones not yet discovered), just XMRV and MLVs? Which was old news anyway. They cannot claim there is no retroviral involvement in ME/CFS.
    jace, beaker, Enid and 1 other person like this.
  7. Snow Leopard

    Snow Leopard Senior Member

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    In my opinion: yes.

    This sort of thing happens all the time in the field of science, its just that scientists don't like to talk about it. :whistle:
  8. currer

    currer Senior Member

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    My paranoid side whispers to me that MLVs could never be admitted to. But on balance I do accept the LIpkin study.
    I'm not prepared to get that paranoid yet.

    But MLVs will always be interesting. There are the results in other diseases to account for.- breast cancer prostate etc.
    If there are no MLVs in ME I would be surprised to be told that they exist in prostate cancer.
    What about breast cancer? There are many papers showing a connection.

    I wonder what will happen to non- HIV retroviral studies in humans generally?
  9. biophile

    biophile Places I'd rather be.

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    Occasionally I write down my dreams. I do not believe dreams hold magical insights into the future or anything, but our brains are predictive pattern recognition machines, and our subconscious can manifest in interesting ways in the dream state, reflecting aspects of ourselves which we may not be aware of when awake. Anyway, the following dream reflects the time when I started having doubts that something may not be right about classic XMRV, not that I was ever convinced:

    I never got tested IRL, but I did donate a small amount of money which I wouldn't mind having back!
    Omar88 likes this.
  10. pollycbr125

    pollycbr125 Senior Member

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    don't kow about dreams so much I think im in a nightmare :aghhh:
  11. currer

    currer Senior Member

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    That is an interesting and touching dream.:)
  12. biophile

    biophile Places I'd rather be.

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    Thanks! I just found another less interesting one:

    "27th July 2011. I had a dream that Alter confirmed in another study that pMLV's were detected in ~94% (saw the figure 93.4% or 93.7% in the dream) of ME/CFS patients and this was going to turn the HGRV research around."

    Seemed a little too good to be true. I think I've had other related but conflicted dreams but did not bother writing them down.
  13. currer

    currer Senior Member

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  14. Kati

    Kati Patient in training

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    Regarding the "bad news" I don't think it's bad news.

    Now we can finally move on. The study has used extreme caution, hired the best of our physiciams to recruit patients best suited, and the best retrovirologists were directly involved in peprforming the research. They didn't find it. Judy could not reproduce her results.

    We must move forward, using this research as a spring board to take us in a new direction.

    Blaming methodology, tests that have or haven't been used, patients, physicians, or screaming conspiracy is not going to help, it will only make us the patients look bad.

    As a suggestion, we need to use Lipkin's words (this is a serious illness) and feed that to our governments, asking for proper funding for our researchers. CFSAC testimonies are due next week. You'd hope that Obama's assistant will be watching. Good timing.
    camas, beaker, SOC and 1 other person like this.
  15. pollycbr125

    pollycbr125 Senior Member

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  16. Firestormm

    Firestormm Senior Member

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    When we have access to the full paper: http://mbio.asm.org/content/3/5/e00266-12.full can we please post it as a separate thread to discuss (if necessary) the science?

    I am also reluctant to view this news (as the title of this thread suggests) as 'bad news' or as anything even comparable with a 'nightmare' scenario.

    The 'nightmare' was surely the length of time this study in particular has taken to come out. Dragging out some people's hopes and fears was in my opinion far more devastating than seeing this study finally get published.

    Stupid Press Association headlines aside - this closes down one (two) avenues but it has brought greater focus to the condition we all suffer from and brought Lipkin (and others) firmly on board (though I am not investing any significant hope that he will 'find' anything substantial in his next generation work).

    I don't think 'we' can afford to invest so heavily in any one person's belief or in any one scientific paper. Unfortunately, whilst XMRV has been rather unprecedented in it's media attention and all the 'spin' - 'we' have been here many many times before.

    As patients I think we have to put our own health first. I have seen too much devastation wrought by investment in this debacle and from investment in 'treatments' more generally - and 'tests' in particular - and not all relating to XMRV.

    I guess though one has to experience it all first hand to learn from it.

    Been burnt myself many many times in the early years. Nothing is ever as good as it first seems.

    Anyway, am looking forward to reading the actual science from this study and will try to listen into the press debrief and TWiV.

    Dig deep chaps :)
    jspotila likes this.
  17. pollycbr125

    pollycbr125 Senior Member

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    well it is certainly bad news for anyone who has a positive xmrv test and believes they have a retrovirus . I hardly think the fact that they are saying they are going to do research is exactly good news they should have been doing that 25 years ago anyway . the last 3 years folk have been to hell and back and shitty badly worded press releases are all we have to show for it so far .How many folk have died over the last few months that we know of alone . everyone is entitled to their own opinion about this but please remember there are a lot of folk who are going to be devastated by this me included !
  18. taniaaust1

    taniaaust1 Senior Member

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  19. VillageLife

    VillageLife Senior Member

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    if I wake up in a few hours and Simon Wessley is on the bbc news and he says "I always new xmrv wasn't it!

    I wont be able to cope if that happens.
  20. Enid

    Enid Senior Member

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    Perhaps it's too early in the morning for me but is something getting lost in translation here. The study was about XMRV and pMLVs (specifically) playing a role in CFS/ME yet the AS of Microbiology issue a press release - viruses not to blame for CFS after all.

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