International ME/CFS and FM Awareness Day is May 12: The World Will Know
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
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8 months: new post by Deckoff-Jones

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jimk, Nov 7, 2010.

  1. Jimk

    Jimk

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    Cleveland, Ohio
  2. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Thank you, Jimk. I've been wondering how Dr. Deckoff-Jones and her daughter are doing. Impossible me for me to guess how knowledge gained from their experiences taking anti-retrovirals, etc., will apply to other patients, but they are brave, and I wish them continuing improvement.
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Europe
    Thanks for this Jim. Its really encouraging to hear how both mother and daughter are progressing.

    They both seem to be using other nutritional supplements/?medication to aid with fat/sugar metabolism though (something called 'Actos' which is also an anti inflammatory) - which is understandable, and I get the reasons she outlines in the blog for using it - I just hope this doesn't cloud the issue of how effective the anti retrovirals are.

    ......

    I particularly like this comment in the link at the end of Deckoff-Jones' update:

    (Guest post by Larry Gilman): "Those who argue that doctors should never do any such thing (my note: prescribe anti retrovirals to ME patients) because it might somehow (how?) slow the gathering of scientific knowledge show a disturbing tendency to view patients as a source of scientific information, rather than as people deserving the best care possible—even in the midst of uncertainty."

    Spot on.
     

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