The 12th Invest in ME Conference, Part 1
Over the Hills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

Discussion in 'Petitions' started by Sasha, Sep 12, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Last edited: Sep 12, 2016
  2. Sasha

    Sasha Fine, thank you

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    From another thread:

     
  3. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Hampshire, UK
    I've signed both and shared on social media.

    I also created a thread about this, only saw this after I posted. I've asked for mine to be deleted.
     
    Jenny TipsforME, JaimeS, Mary and 4 others like this.
  4. snowathlete

    snowathlete

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    Sign, Sign!
    Share, Share!
    Smile, Smile!
     
  5. TigerLilea

    TigerLilea Senior Member

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    Signed and shared on Facebook.
     
    MeSci, JaimeS, Bob and 2 others like this.
  6. Sasha

    Sasha Fine, thank you

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    We were on the thread that's going to be deleted, Jaime! :)


    We in the UK need to blast this through the stratosphere because MAGENTA - the only GET trial that's happening now, or even planned, AFAIK - is a UK trial. Pressure from UK citizens and especially from the UK government is going to be what stops it. Let's tell the funding and ethics committees what we think about this trial!

    Getting 10,000 signatures on the UK government petition automatically triggers a response from the UK government. So let's make them pay attention!

    Let's get those 10k signatures in and make this the biggest ME/CFS petition the UK has ever seen.

    Go, go, go! :rocket::rocket::rocket:
     
    Keela Too, Jan, Snowdrop and 2 others like this.
  7. Sasha

    Sasha Fine, thank you

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    There's a really cool "show on a map" button on the UK petition - I think I can see myself! And I'll see when my sister signs. :)

    Just go our first UK 100! :rocket:
     
  8. duncan

    duncan Senior Member

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    I think a special dispensation should be made for citizens of former UK colonies that allows for them to participate as UK signatories. :thumbsup:
     
    ukxmrv, halcyon, TigerLilea and 4 others like this.
  9. Mary

    Mary Senior Member

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    I just signed the global petition, and shared on FB (the only social media I sort of know how to use! :confused:)
     
    MeSci, JaimeS, Sasha and 1 other person like this.
  10. PennyIA

    PennyIA Senior Member

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    Sign people! Sign! I shudder at the thought of those poor children being made worse and blamed for their false illness belief persistence.
     
    KristenSF, MeSci, NL93 and 7 others like this.
  11. JaimeS

    JaimeS Senior Member

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    Very excited to see the numbers shoot up on global -- over 300 signatures and it's barely been a handful of hours. Our community feels strongly on this!

    Please keep pushing. It's important that we garner as many signatures as possible. Using exercise to treat ME is outrageous -- let's let everyone know about it.
     
    Mrs Sowester, MeSci, TiredSam and 8 others like this.
  12. Sasha

    Sasha Fine, thank you

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    If anybody outside the UK has friends/family within it, now's the time! Tell them about the UK government petition, and get them to sign and share.

    :globe::globe::globe:
     
    MeSci, JaimeS, Kalliope and 1 other person like this.
  13. 2kidswithME

    2kidswithME

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    Have signed and will share on FB. Thanks to all who have worked to set it up and also the website.

    I clicked through to look at the trial info on Bristol's site, and not impressed at several typos in the parent information document. Even basic editing should have caught them. And my stomach churned at the statement that GET isn't harmful, have they completely ignored the major surveys by MEA and others?!

    Lastly I glanced at the questionnaire for older kids, and there's a whole section obviously looking for mental health issues, including one 'I am afraid of dogs.' :mad: WTF does that have to do with ME?, (I am not usually a swearing person but this one in particular made me very angry.) some of the other statements are equally bizarre.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Signed them both! I was worried that I wouldn't be able to due to my inability to access the ME Action messages, but I did it.
     
    JaimeS, Jan, Sasha and 1 other person like this.
  15. daisybell

    daisybell Senior Member

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    Voted - 155 on the UK citizen petition....
     
    Bob, JaimeS, Sasha and 1 other person like this.
  16. A.B.

    A.B. Senior Member

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    @JaimeS Would you like a statement by someone who doesn't seem to be at risk of permanent harm by exertion but doesn't find it an effective treatment either?

    Could be useful, because some could try to argue that GET helps a subgroup.
     
    Adelle Lee and JaimeS like this.
  17. Ben Howell

    Ben Howell OMF Correspondent

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    185 UK,

    400 something globally.

    Lets go!


    B
     
    snowathlete, MeSci, Bob and 2 others like this.
  18. OverTheHills

    OverTheHills

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    Thanks for making it clear that UK citizens, even if they don't live in the UK, can vote in the UK poll.

    OTH
     
    MeSci, TiredSam, AndyPR and 1 other person like this.
  19. Sasha

    Sasha Fine, thank you

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    UK petition over 200 signatures now! :rocket::rocket:

    The global one is over 400. :rocket::rocket::rocket::rocket:
     
    MeSci, Bob, JaimeS and 2 others like this.
  20. Daisymay

    Daisymay Senior Member

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    This is brilliant, signed and will pass on. Sincerest thanks to all who organised this x
     
    MeSci, Bob, AndyPR and 3 others like this.

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