Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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NIH reveals its strategic plan for 2016-2020

Discussion in 'Other Health News and Research' started by Countrygirl, Jan 3, 2016.

  1. Countrygirl

    Countrygirl I'm with Cheesus

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    http://www.nih.gov/news-events/news-releases/nih-unveils-fy2016-2020-strategic-plan

    No mention of ME or CFS in the list of objectives, but, oh joy, we are promised this:
    Where is the alleged promise to help those with ME?
     
    ahmo, Marky90, Aurator and 2 others like this.
  2. worldbackwards

    worldbackwards A unique snowflake

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    I believe the ME strategy looks something like this:







































    .
     
  3. sarah darwins

    sarah darwins I told you I was ill

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  4. Countrygirl

    Countrygirl I'm with Cheesus

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    Ha! Says it all really!

    NIH policy: No need for me to add the script. The photo says it all.

    [​IMG]
     
  5. Old Bones

    Old Bones GOING, going . . .

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    Absolutely love it! Playing the piano is one of the many activities I've lost post-ME. Thanks to your video link, I now know a way, minus the arm in the air (too hard on my muscles, and bad for my POTS) that I can resume this hobby. I think I'll go and dust off my piano right now. In no time, I'll be a virtuoso. Heck, perhaps I'll even put on my old formal wear, unused after decades of no parties. What a wonderful way to start the new year!
     
  6. Aurator

    Aurator Senior Member

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    "A pivotal efficacy trial of a novel HIV vaccine, expected to begin in the Republic of South African in 2016, will confer at least 50% protection against the acquisition of HIV."
    Can someone tell me just what the deal is? An illness that gets billions already gets further explicit commitment to special consideration. Does this Strategic Plan reflect what Brian Vastag asked for on behalf of all of us and what Francis Collins obscurely promised?

    Or is Collins keeping quiet about where the real money is going to go? Yeah, right.
     
  7. worldbackwards

    worldbackwards A unique snowflake

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    I suspect one of two things: either Collins was in earnest but he can't get the wheels moving, or it was all a lot of bluster to get rid of some unwanted attention until it died down. Either way it doesn't look good.
     
    jimells likes this.
  8. sarah darwins

    sarah darwins I told you I was ill

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    Glad you enjoyed it, OB. I feel for you. I'm lucky in still being able to play for short periods, on good days, and only very slow pieces (which is just as well, given how badly I played the fast ones!). But I know how much it means and I do hope one day you're able to play again.
     
  9. SB_1108

    SB_1108 Senior Member

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    My job before I became sick involved reviewing government-wide strategic plans so I just wanted to say that they are often vague and lack certain specific details. The absence of ME/CFS, although disappointing, does not mean complete neglect.
     
  10. Old Bones

    Old Bones GOING, going . . .

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    @sarah darwins I know what you mean, only being to play very slow pieces. I rarely touch my piano these days, and when I do, playing often feels like an aerobic exercise after as little as two minutes. But, my biggest problems are cognitive. At my worst, not only was I unable to read music, I couldn't recall the little rhymes children learn to help them remember the notes. The keyboard looked unrecognizable, with some of the octaves missing. And, the keys looked and felt like they were depressing themselves. Fortunately, these extreme challenges/distortions are gone. But, I can't learn or retain any of what I practice. So, despite it being 50 years since I started lessons as a child, there's not a single piece I can play. For me and the piano, "practise makes stupid" -- the more I try, the worse I get.
     
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  11. ahmo

    ahmo Senior Member

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  12. sarah darwins

    sarah darwins I told you I was ill

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    @Old Bones - next time I see a shooting star, I'm making you a wish

    xx
     
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  13. Old Bones

    Old Bones GOING, going . . .

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    @ahmo
    :redface: Thanks for the hug and kiss from across the world. It put a smile on my face.
     
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  14. BurnA

    BurnA Senior Member

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    Would be interesting to have @leokitten 's view on this
     
  15. SB_1108

    SB_1108 Senior Member

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    Since ME/CFS will soon be (or has already been???) moved to the National Institute of Neurological Disorders and Stroke, their strategic plan would offer further details (however again... it would all be very generic). Agencies typically issue a new strategic plan every four years however from the NINDS website, it appears they haven't issued a new strategic plan since 2010: http://www.ninds.nih.gov/about_ninds/plans/Strategic_Plan_2010.pdf

    Even if NINDS issued a new plan this year, it is probably too soon to assume that they would include ME/CFS.
     
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  16. Forbin

    Forbin Senior Member

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    I'm especially fond of the second movement of this piece.
     
  17. Denise

    Denise Senior Member

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    The ME/cfs Trans-NIH Working Group is still in charge of us - we do not have an institute home in NINDS or any other institute. Because we have no institute home, we fall under no one's strategic plan.

    NINDS is currently chairing the ME/cfs Trans-NIH Working Group but my understanding is that the job of chairing the Working Group will rotate periodically.
     
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  18. SB_1108

    SB_1108 Senior Member

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    Thanks @Denise - I still get confused about that entire situation. I just had to Google it again. This is what the Office of Research on Women's Health's website currently says about it:

    So you are exactly right @Denise - we would likely fall under no one's strategic plan. That is unfortunate but the plans are so vague and primarily for bureaucratic documentation purposes - it doesn't necessarily mean that we've been completely forgotten. But at the same time, maybe we should be advocating that ME/CFS be included on someone's strategic plan?
     
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  19. Denise

    Denise Senior Member

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    Totally understandable that you/we get confused.
    It feels as though we have been led to believe there'd be a significant move, a significant funding change, etc. but it thus far it doesn't seem as though there is much of a difference.....
     
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  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    In which case they could be in for a rude awakening.
     

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