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Jen Brea launches mass-advocacy platform — #MEAction goes live!

Discussion in 'Phoenix Rising Articles' started by Sasha, Jun 9, 2015.

  1. SOC

    SOC Senior Member

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    Agreed. At the same time, I appreciate @Sasha giving us a heads up about what's in the petition so that I don't waste a load of energy reading a long petition I'm ultimately not going to sign.

    The important point is that there's lots of advocacy opportunities highlighted at #MEAction, so not only is there something for everyone, there's plenty for anyone, whatever their views on any number of topics in the realm of ME advocacy.
     
    Scarecrow, Valentijn, aimossy and 3 others like this.
  2. Nielk

    Nielk

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    I agree that MEaction has something for everyone and is a great platform. They feature and promote ALL advocacy efforts in the community.
    You might not be interested in signing a petition that promotes funding as well as the name ME and ME criteria but there are many others that do.
     
  3. SOC

    SOC Senior Member

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    Certainly. That's exactly why I made a point of saying there's something for everyone there. For me, there's the MEAction funding petition without additional demands. For those who want to include the demand for a particular name and definition, there's the the MEAdvocacy petition. Perfect! Exactly what we need. :thumbsup:

    Let's move along. There's no problem here. Let's get back to focusing on the amazing mass advocacy platform #MEAction.
     
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  4. Sasha

    Sasha Fine, thank you

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    I'd love to know, at some point, how many people they've got signed up to their newsletter, or what sort of traffic they're getting.

    As a community, we need to be mobilising in the tens of thousands, and a high-profile, central point like this has the potential to do that.
     
    Scarecrow and SOC like this.
  5. searcher

    searcher

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    Hi @Sasha-
    I have been helping with the site, and these are some stats you may find interesting:

    1. We had roughly 2,000 users last month, 25% of whom went straight to the petition page.

    2. We have 145 members on the site right now. Note that these are people who explicitly set up an account on meaction.net, which is not required for signing petitions.

    3. As of last night we have 2295 petition signatures! There have been 784 on the US petitions and 1511 on the global petition.

    We are working on improving the UI (user interface) for the site so it will be easier for patients to get involved and take action.
     
    Scarecrow, Simon, Valentijn and 3 others like this.
  6. Sasha

    Sasha Fine, thank you

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    Scarecrow, searcher and Simon like this.
  7. JenB

    JenB

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    Hi Sasha,

    I just wanted to thank you very belatedly for this very generous (if not a little blush-inducing) post. I unfortunately crashed pretty hard after the launch (for mostly unrelated reasons).

    I am so grateful for the faith that you and so many have in the work we are doing. We are trying hard, that's for sure, and hope that #MEAction can become a space to inspire and support all of our efforts to fight for a better future.

    Jen
     
    Mel9, GaryK, Valentijn and 11 others like this.
  8. Sasha

    Sasha Fine, thank you

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    Thanks, Jen! It's a superb venture, absolutely brilliant. I hope it goes from strength to strength!

    Sorry to hear you crashed - this illness is such a tough one.
     
    Mel9, Simon and mango like this.
  9. beaker

    beaker ME/cfs 1986

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    I read this article and went to "like" it and found I already had. I have no memory of previously reading it.

    At least I liked it both times I read it !

    I think it's great to have a central clearing house for advocacy.
     
    Mel9, Simon, Bob and 1 other person like this.
  10. Sasha

    Sasha Fine, thank you

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    :thumbsup:

    Glad it's not just me who does that.

    It's crucial that we have one - we want everyone forming a huge crowd in the one spot rather than being scattered over the internet.

    As Jen says, strength in numbers!
     
    Mel9, Simon, mango and 2 others like this.
  11. Seanko

    Seanko Senior Member

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    Jen has already done some fantastic work with the #MEAction team. The CDC funding error has been picked up & acted on.

    Shows along with the excellent work of Jenny Spotilla how ME/CFS should be done. The initiatives are something which we can all take part in. :)
     
    Simon and Sasha like this.

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