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

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

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    That's great. I wonder if people are using methods other than social media? Surprisingly not everyone is on social media. The occasional campaigning email may go down well if you email the right people.

    My neighbour just signed after my partner sent the link as a text message.
     
    Joh and AndyPR like this.
  2. Barry53

    Barry53 Senior Member

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    Apologies if this has already been done, but is it worth referencing Dr. Davis Q&A where he says there is increasing possibility that "pushing through" the fatigue might well be what is causing and perpetuating ME/CFS. That surely has strong relevance here.
     
    JaimeS, Joh and Jenny TipsforME like this.
  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Joh and AndyPR like this.
  4. Keela Too

    Keela Too Sally Burch

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    This morning my brother told me he was signature #5555, and now this evening we are on 6115... that's pretty good progress! :)
     
  5. AndyPR

    AndyPR Senior Member

    Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

    UK, now at 6,223. 10,000 needed for response from Parliament.
    Only a few days left, deadline for signing is 12th March.
    https://petition.parliament.uk/petitions/166601
    UK citizens, please also sign the global one below.

    Global, now at 4,471.
    https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

    Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA
     
    Joh, MEMum, Lindberg and 1 other person like this.
  6. Jo Best

    Jo Best Senior Member

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    Lots of people are trying to give the UK government one a big final push on Facebook and Twitter as it closes 12th March and needs 10k signatures to get a response - https://petition.parliament.uk/petitions/166601
    Anyone on any other wide-UK-reach social media?
     
    JaimeS, Jenny TipsforME and MEMum like this.
  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Bristol
     
    JaimeS, Hutan, MeSci and 1 other person like this.
  8. AndyPR

    AndyPR Senior Member

    Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

    UK, now at 6,606. 10,000 needed for response from Parliament.
    Only one day left, deadline for signing is 12th March.
    https://petition.parliament.uk/petitions/166601
    UK citizens, please also sign the global one below.

    Global, now at 4,476.
    https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

    Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA
     
    JaimeS, Esther12 and Jenny TipsforME like this.
  9. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Does anyone have the energy to update these forums referenced in this post?
     
    AndyPR and Jo Best like this.
  10. AndyPR

    AndyPR Senior Member

    Last day to be able to sign the UK petition.

    Visit http://www.stopget.org/ for the background detail or use the links below to go straight to the petitions.

    UK, now at 6,960. 10,000 needed for response from Parliament.

    https://petition.parliament.uk/petitions/166601
    UK citizens, please also sign the global one below.

    Global, now at 4,478.
    https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

    Sign now to stop trials using GET on ME sufferers (especially on children i.e. MAGENTA
     
    MeSci, JaimeS, Hutan and 2 others like this.
  11. Esther12

    Esther12 Senior Member

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    It's gone up rapidly on the last few days, but needs another big boost to get to 10,000 today.
     
  12. AndyPR

    AndyPR Senior Member

    Sadly I don't see it hitting the 10,000 mark, given how long it took to get to 7,241, which is where it is right now. :(
     
    Hutan, Keela Too and Joh like this.
  13. Joh

    Joh Inactivist

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    Germany
    It's so sad that all ME petitions (except for Mary Gelpi's) have extremely low signature numbers, when we're supposed to be 17 million pwme worldwide. We should be able to reach any goal with this number of people! Guess one huge problem is, that over 80 % are undiagnosed. Millions of people are missing from petitions and advocacy because they have no idea what's wrong with them or that ME exists. I had no idea for 14 years until last summer. :hug:
     
    JohnM, MeSci, Hutan and 3 others like this.
  14. slysaint

    slysaint Senior Member

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    (like me), they had/have no idea of what's been 'going on'.
    (And the people they thought were looking out for their interests failed to inform them).
     
    SamanthaJ, Jo Best, MeSci and 2 others like this.
  15. JaimeS

    JaimeS Senior Member

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    Mid-Ohio Valley, United States
    The site is down -- total coincidence, I'm sure(!) -- so it's even more important that we campaign personally. If you haven't yet tweeted, posted to Facebook, sent out emails to friends, now is the time ladies and gents.

    Here is the link: https://petition.parliament.uk/petitions/166601

    We're around 7,500, so we just need 2,500 more. Since Jenny's announcement that it was the last few days, we've gotten about 1,000 signatures a day. If we really push, I feel like we can do this. I know it's hard to invest time when we don't know whether or not there will be payoff.

    I honestly do think it's rather ominous that the site suddenly won't load on my computer so that strangers can't see/find/hear our point of view, but I'm hopeful that it's just my computer? :cautious:

    Jaime
     
    Joh likes this.
  16. AndyPR

    AndyPR Senior Member

    Works fine on my computer, currently at 7,423 signatures.
     
    MeSci likes this.
  17. JaimeS

    JaimeS Senior Member

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    Sorry, @AndyPR, I meant the site stopget.org -- the thing that actually contains stories from real patients, looks professional, and presents our point of view to the outside world. Without that link working, all we have to convince people is the very short blurb attached to the petition itself.

    I'm not a conspiracy theorist, but I find it very odd that the site suddenly won't load at this point, on the very last day. It loaded yesterday. If someone else can access stopget.org, I'd know it was just my computer or browser being odd.

    Jaime
     
  18. AndyPR

    AndyPR Senior Member

    Oh, I see.

    Just checked stopget.org, it was slow to load but it did eventually.
     
  19. JaimeS

    JaimeS Senior Member

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    Maybe just a lot of people are looking. that would be awesome. <3

    [Edit]: Mine still won't ... wait, it finally loaded. That took about 3 min. Not sure what's wrong....

    Oh, nope -- it loaded with this message: "
    Error establishing a database connection"
    ]
     
  20. AndyPR

    AndyPR Senior Member

    Yeah, I would imagine then that it's an amount of traffic to the site issue.
     
    JaimeS likes this.

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