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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Advocacy - Looking for like minded people for new project.

Discussion in 'Advocacy Projects' started by redviper, Apr 2, 2014.

  1. redviper

    redviper

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    Hey guys,

    It's becoming apparent that ME community needs a new vehicle for effecting change. I'm looking to speak/work with people who believe in both of the following two principles.

    1) There is no psychological link or root cause to the onset of ME. This will be one thing that defines our team from some of the alternative projects out there.

    2) You would like to actively participate on social media once in awhile to help advocate for the rights of ME patients.

    It's pretty simple, if you meet those two criteria and have a desire to help make a change for our community, I would love to talk further with you.
    vli likes this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Sounds do able. What are you talking about in regards to social media? I am only on Facebook, not on Twitter etc..

    GG
    vli likes this.
  3. redviper

    redviper

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    Hey ggingues, I just sent you a private message.

    If anyone else is interested, we are still looking for more people, so feel free to either post or reach out to me directly.
    vli likes this.
  4. Mark

    Mark Acting CEO

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    Sofa, UK
    Hi redviper. I read your post and I'm wondering whether your project might be able to happen as part of a Phoenix Rising advocacy group - We'd like to set one up, but we haven't found anyone yet to organise that group.

    Our thoughts about it so far have focused mainly on the idea of having a group of experts to compose well-referenced and well-written letters/papers/statements/etc, working partly as a dedicated group but always in consultation with forum members via forum threads (as we did for the IOM presentation), to produce outputs that forum members can then show their approval for in polls, online petitions, etc, and which the PR board can also endorse. We've got lots of good people prepared to help out a bit with that, so there's the basis of a great team there if we can get up and running, but we've not found anybody yet who's prepared to organise it. (ie be Advocacy Team Lead).

    But I'd also be quite happy for us to be organising and/or supporting social media campaigns, assuming of course that those campaigns are appropriate and supported by most of our members. I also expect that most of our members would be happy to sign up to your first point above.

    As I say, all we're really waiting for is someone with the time, energy and desire to organise this group (which doesn't require any advocacy experience or viewpoint per se, since it's mainly an organisational task and myself and others in the PR team would be supporting that person). And of course we have loads of other resources we can support you with. So maybe this might be something you might like to do as part of this Phoenix Rising advocacy group, or maybe even help to organise that group? If so, let me know in Conversation and we can arrange to meet. (Same applies to anyone reading this who's interested, of course).

    If you'd rather form a separate project, apologies if I've hijacked your thread and I wish you all the best of luck with it.
    vli, Valentijn and beaker like this.

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