A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Mark Zuckerberg curing all diseases

Discussion in 'Other Health News and Research' started by BurnA, Sep 21, 2016.

  1. BurnA

    BurnA Senior Member

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  2. worldbackwards

    worldbackwards A unique snowflake

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    Doesn't apply to me, because I'd rather die like this than have a Facebook account.
     
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  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    :lol:
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Pretty frigging awesome though!
     
  5. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Lol Ditto ;)
     
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  6. BurnA

    BurnA Senior Member

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    yep - how awesome would it be it we could get his attention ?
     
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  7. *GG*

    *GG* Senior Member

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    Yeah, wow, we should just let him take over research, if he can solve everything with only 3 Billion dollars!

    GG
     
  8. snowathlete

    snowathlete

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    Nice idea, it won't be enough money though unless he is careful it wasted on crap like PACE, where really the only benefit is to the authors and the institutions they're associated with.

    Would be nice if he started with ME/CFS, you know, on the basis that it's probably the most common chronic disease in the world for which there is not a single treatment, which is hugely debilitating, and that strikes down people in their prime and is generally life long. I'd like that on Facebook.
     
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  9. Jennifer J

    Jennifer J Senior Member

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    I can't read the article now. Maybe what I write below is already being done.

    Off the top of my head @JaimeS, @JenB, @Ben Howell, @Rose49, @ScottTriGuy, @AndyPR .... (and also for everyone):

    I was wondering is anyone reaching out to them for funding for us: for OMI, Lipkin and our other researchers? Have something well prepared to make our and the research case, maybe something from OMI, Lipkin... one of the doctors if that would help more.

    I've been thinking there must be some ways to reach more Silicon Valley companies and attract them (find something that would be appealing to each company or person) for donations and funding for us.

    Does anyone know any professional fund raisers that might want to volunteer to help us? Or maybe we can find one? Perhaps even one that is connected in Silicon Valley!

    As always, thank you everyone for your advocacy and work to try to change this and make it better. :hug:
     
    Last edited: Sep 21, 2016
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  10. AndyPR

    AndyPR Senior Member

    Perhaps Ron Davis can find the right person to have a little chat to??
     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for the heads up @Jennifer J

    I am currently immersed in 2 upcoming Millions Missing Canada campaigns, and my day job, so can't take on more for a few weeks, but there is definitely an opportunity for our community with this announcement.

    I imagine it will be quite a competitive process to get funding - but we do have a very compelling narrative, especially with Naviaux and PACE developments.
     
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  12. JaimeS

    JaimeS Senior Member

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    Ha! I just tweeted him. :D

    I sent him to millionsmissing.org -- if you guys haven't seen that video, you really should. It's something else, and it has a compelling narrative!

    -J
     
  13. Ben H

    Ben H OMF Correspondent

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    Hey @Jennifer J

    I have sent an email to Linda, head of OMF. Im sure she will have already seen this, but have done so anyway.

    The fact the initiative has ties to Stanford could be useful....

    Lets see.


    B
     
  14. JaimeS

    JaimeS Senior Member

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    "
     
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  15. JaimeS

    JaimeS Senior Member

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    Re-tweet guys -- let's get his attention!
     
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  16. Nielk

    Nielk

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    I would not consider ME an orphan disease.

    Maybe "most neglected"?
     
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  17. JaimeS

    JaimeS Senior Member

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  18. BurnA

    BurnA Senior Member

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    "200,000 people nationwide"

    What nation are you refferring to ?
     
  19. Nielk

    Nielk

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    https://en.wikipedia.org/wiki/Rare_Diseases_Act_of_2002

     
  20. JaimeS

    JaimeS Senior Member

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    Ok -- but besides the point. Please re-tweet in order to get Mark's attention, unless you think that using the term 'orphan disease' is a dealbreaker!
     

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