The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Could you please .....? ( another one GET UK """study"" ", but on childs/pre-adolescents)

Discussion in 'Action Alerts and Advocacy' started by funkyqueen, Sep 1, 2016.

  1. funkyqueen

    funkyqueen Senior Member

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    South of France
    Hi there !

    Could some of you, guys, (with an English better than mine, and sufficient " energy"), can writte to this team, trying to learn them ( with links of studys, and particulary, the exciting last one - Naviaux &Al, about hypométabolisme ), how much it will be harmfull for those childrens/ pre-adolescents, to be involved in their " " " study " " " ? ( another f*cking GET " study" .......... grrr !!!)

    (link to contact them at the end of this 1rst link )
    Thanks for them ! ( 100 childs will be concerned )

    http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/magenta-trial/

    http://www.ncbi.nlm.nih.gov/pubmed/?term=MAGENTA CFS/ME
     
    Mary and Theodore like this.
  2. JaimeS

    JaimeS Senior Member

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    Silicon Valley, CA
    Actually, something has been in the works on this for some time now, but it requires serious strategizing.

    This represents months of work on the part of a large group of hardworking individuals, [having edited this to be vaguer, sorry... strategy again!]

    The effort is very close to completion! Because so many are working together, waiting for input / feedback from important parties sometimes takes precedence over our sense of urgency. Jumping the gun can result in petitions that are just 'feel good' -- not addressed to the right person or with the right input (i.e. crafting an ask that can actually be accomplished by the party you address) that have little impact.

    This is absolutely something that can kindle righteous anger and it does in me, too. But Credible Hulk wants credibility. ;)
     
    Last edited: Sep 1, 2016
    AndyPandy, Blue, funkyqueen and 17 others like this.
  3. slysaint

    slysaint Senior Member

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    [​IMG]
     
  4. JaimeS

    JaimeS Senior Member

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    Silicon Valley, CA
    And here we go, ladies and gents. Fasten your seatbelts.

    http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

    And do read FAQ on main site (www.stopGET.org) before describing how it would have been done differently/better if only YOU had been there to advise, lol.

    I love my community, and I also know my community! :D Done w/advice from many realms. Worked on by a small, dedicated, very ill team with advice from patients and non-patients alike, with backgrounds in gov't, law, statistics, PACE in specific, and research in general. Please be respectful of the effort that went into this, which was enormous.

    POST IT EVERYWHERE. Really we gain the most exposure when everyone who decides to sign tweets or Facebooks their signature. If social media exhausts you, please consider emailing the link to others.

    Thank you so much for your support -- it means the world.
     
    Last edited: Sep 12, 2016
    AndyPandy, TiredSam, Cheshire and 7 others like this.
  5. PennyIA

    PennyIA Senior Member

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    Iowa
    Signed & will be posted on facebook when I get off of work.

    What a well-worded petition!

    I can't think you enough for all your (and the team's) hard work!!!!
     
    JaimeS, Blue and AndyPR like this.
  6. Countrygirl

    Countrygirl Senior Member

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    Thanks @JaimeS . Signed and shared on Facebook.
     
    JaimeS and AndyPR like this.

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