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Media Coverage of Dr. Alters NIH paper, post stories here

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Aug 23, 2010.

  1. Sasha

    Sasha Fine, thank you

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    Thanks for these links, Eric! I don't know how many people read the French Santelog but their headline roughly translates as "XMRV virus threatens transfusion recepients with Chronic Fatigue Syndrome" and the first sentence reads, "The XMRV virus could be a real threat for people receiving a blood transfusion".

    Vive la France! This is the sort of headline I was expecting to see splashed across the UK this morning (certainly in the Daily Mail!).
  2. eric_s

    eric_s Senior Member

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    LOL... Hey, we are the "ME Association"... hmmm... there was a confirmation study linking ME to a retrovirus... well... maybe we should publish a statement "later in the week" (quote)... ok... back to sleep :rolleyes: what do they think they are there for?
  3. eric_s

    eric_s Senior Member

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    Exactly... they see the risk, and it feels like they get what that could mean
  4. bullybeef

    bullybeef Senior Member

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  5. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    ME Association don't know their XMRV from their MLV related viruses

    They even managed to get that brief message wrong, by saying :

    Not good when an advocacy group gets these things wrong.

    TGOP :Retro mad:
  6. WithHope

    WithHope

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  7. eric_s

    eric_s Senior Member

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  8. Sasha

    Sasha Fine, thank you

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  9. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    A good first attempt

  10. Min

    Min Senior Member

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    The daily Mail always do well by us, within their limitations as a tabloid - we should encourage them with praise so they print it in the paper. I'm surprised the Independent hasn't run the story.
  11. Marco

    Marco Old blackguard

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    I can't say I've noticed any rioting yet Eric but we're only a small hamlet with a population of under 10.

    But I'll keep you posted - or maybe I'll torch something myself!;)
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    I've just emailed the following to the ME Association:

    Dear Dr Shepherd and Tony,

    Re: Recently published Alter/Lo FDA/NIH paper:

    Please could you make an important correction to your website?

    The recently published Alter/Lo paper from the FDA/NIH found related MLV's in CFS/ME patients, not XMRV specifically.

    This is an important distinction if we want to remain scientifically accurate.

    Please see attached YouTube video of Dr Mikovits in which she congratulates Drs Lo and Alter and explains the connection between XMRV and MLV's.

    http://www.youtube.com/watch?v=9ZEwQUg7o6I&feature=channel&forumid=331851

    Many thanks, it is much appreciated.

    I expect they were up v late last night as were the rest of us in the UK!
    They will probably want to read every inch of detail before posting comment.

    Don't forget it is likely that many who work at the MEA have ME/CFS like the rest of us and may be finding it difficult to read/interpret the scientific material immediately and to construct a meaningful scientific analysis.

    They are also right up against a particularly vicious, hellbent, well-funded, government and medical research council, psychiatric lobby here in the UK and have limited funds in comparison.

    They are taking a slow and steady route and it would be great if we could support them.
    As mainstream traditional patient charities go in the UK they're pretty much the best hope we've got.
  13. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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  14. Sasha

    Sasha Fine, thank you

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    I've posted a comment (you have to register, but that's quick). At the moment they have zero comments published but they are pre-moderating.

    I praised them for covering the story and pointed out that it's a huge story because it's a retrovirus and probably in the UK blood supply (both aspects not mentioned in their coverage). I called for UK govt funding and protection of the blood supply, and pointed out that the expert commentary on the PNAS paper (in the journal itself) called for immediate "proof of principle" clinical trials of ARV for ME/CFS.

    Let's comment and push them to see the real scope of the story beyond what was in the press release! I recommend that we PRAISE THEM for their coverage (we want them to do it again!) and tell them what a big story it is, and why. I also recommend keeping the messages short so that people will read them.
  15. Sasha

    Sasha Fine, thank you

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    Just wave your arms about a bit, Marco, and maybe while holding a flashlight! We do what we can!
  16. bullybeef

    bullybeef Senior Member

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    I have added a comment too. I have asked why they haven't used retrovirus to describe MLVs/XMRV, and why they continue to use the word 'only' to describe 7% healthy infected?

    7% of the UK is 4.3 million healthy carriers; the US is 21 million healthy carriers!! If that isn't an epidemic, I don't know what is.
  17. eric_s

    eric_s Senior Member

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    Hehehe, Salut... :balloons:
  18. BEG

    BEG Senior Member

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    F.Y.I.

    Page 4 of my local newspaper under the Heading nation & World:


    Los Angeles Times:

    "Government scientists have found traces of a mouse-related virus in 86% of Patiets with chronic fatigue syndrome, a discovery that is likely to reignite the controversy surrounding the virus widely know as XMRV. Nevada scientists first reported its prescence in CFS patients in 2009, but at least three subsequent studies failed to detect it. On Monday, however, researchers from three different government agencies said they had found the virus in stored and fresh blood samples. The government is sponsoring a number of studies to determine, among other things: whether the virus is present in many or most patients with CFS."
  19. eric_s

    eric_s Senior Member

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  20. BEG

    BEG Senior Member

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