A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Talking about a revolution!

Discussion in 'Action Alerts and Advocacy' started by Nielk, Dec 12, 2011.

  1. Nielk

    Nielk

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    [video=youtube_share;7rZbvi6Tj6E]http://youtu.be/7rZbvi6Tj6E[/video]

    From Franky Dolan, "I love you my Invisible Diseases friends (and supporters!) It is time to rise up! If we don't, no one will. ... I'm taking about a Revolution!!!"

    So, what do we do?
    Any suggestions for this revolution?
     
    allyb likes this.
  2. Tuha

    Tuha Senior Member

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    my biggest suggestion is to stop to talk only, we need to take an action. you will see here a lot of threads about some ideas, the people are talking days about but without moving it further. talking and only talking will not help us. its all the time this problem. we will not do our revolution only with talking.
     
  3. SOC

    SOC Senior Member

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    Sorry to be a bit OT, but had to share my initial mental picture of our revolution -- all of us "rising up" from our beds, staggering dazed through the streets like a bunch of zombies. It might make an impression on the general population. :D
     
  4. Carrigon

    Carrigon Senior Member

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    We need an Occupy the CDC movement to force them to admit publicly how serious and debilitating this disease really is. And I want them to show us every record they have about this disease dating back over thirty years. And I want a full explanation of exactly where the research money for our illness has gone all these years. And why they gave such a severe and life stealing disease a deliberately demeaning name. I want them to have to answer for everything they have done.
     
    justinreilly, *GG* and Nielk like this.
  5. Nielk

    Nielk

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    I like that, Carrigon: Occupy the CDC

    The CDC has 10 locations besides
    Atlanta, Georgia

    Anchorage, Alaska
    Cincinnati, Ohio
    Fort Collins, Colorado
    Hyattsvile, Maryland
    Morgantown, West Virginia
    Research Triangle Park, North Carolina
    San Juan, Puerto Rico
    Spokane, Washington
    Washington, DC

    Who could we think of who would be able to organize an Occupy the CDC event simultaneously at all locations?
     
  6. alex3619

    alex3619 Senior Member

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    HI SOC, our version of a Zombie Apocalypse? Thirty million zombies in the world and nobody noticed? Bye, Alex
     
    Enid likes this.
  7. SOC

    SOC Senior Member

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    Exactly, Alex!
     
  8. alex3619

    alex3619 Senior Member

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    On zombies and revolutions, you might like to read my new blog which has been lurking on my desktop for some weeks. I have another blog almost ready to go as well, on ME modelling, but that will be another day:

    http://forums.phoenixrising.me/entry.php?1264-Horror-Story

    Something arising as a result of an exchange between me and another advocate is a slogan:
    "Occupy Their Conscience: We can't occupy the streets, lets occupy their minds!"

    We are too sick for a physical revolution - that will be impossible until we can get huge numbers of non-ill advocates fighting for us. In the meantime, we can indeed stage a virtual fight for our rights and the well-being of the world.

    Bye
    Alex
     
    justinreilly, allyb and L'engle like this.
  9. Ember

    Ember Senior Member

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    I wonder how Solidarity Hunger Strike went today. That's something I've thought about for us, but I've considered it too dangerous. However, a 24-hour fast seems pretty tame. (Or is theirs an ongoing hunger strike?)

    They write, Thursday, December 15, join the OWS Hunger Strikers for a national 24-hour fast to protest the violent evictions across the country that have robbed the Occupy Movement of our right to free speech and assembly. Thursday will be the thirteenth day of the hunger strike for space" (http://occupywallst.org/article/solidarity-hunger-strike/).
     
  10. Nielk

    Nielk

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    I don't know about the rest of you but just the word "revolution" makes me feel empowered.
    We have to start thinking out of the box and rev up the activism. There are too many people losing their lives from this disease whether literaly or the life we have is so insufferable.
    How can the world just sit by and do nothing? I think the biggest problem is ignorance and who else can or would advocate for us but ourselves?
    We are not all zombies. The ones who are stronger are going to have to step up and do the work for the others. That's the only way.
    I don't want to die not having tried whatever i possibly can to help myself and others have a chance at a normal life.
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Another word beside occupy. UG. So tired of those people doing damage. A better word is needed.
     
  12. Nielk

    Nielk

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    I can fast for 24 hours. It's not easy, but I do it a couple of days in the year.
     
  13. Nielk

    Nielk

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    Yes, you are right - looking at it, it brings on evil connotations. I know that you are sensitive, kind and peacefull. It's in your signature!
    What would you advise we do - to get attention to our plight?
     
  14. Nielk

    Nielk

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    How about "Ignorance is no excuse anymore"?
     
  15. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Neilk, I was just talking about Occupy...those people that have done awful things in the protests there. Would be better to use another name.
     
  16. *GG*

    *GG* Senior Member

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    I think the sit by and do nothing is easy for some people, they are really sick, I don't think you were including them though, my impression is, that this would include you?

    I think ignorance is a big issue, I would like to think that I was rather informed and watched the news on a nightly basis, but this illness did not get much media etc.. attention in the past. Golden girls episode, Newspaper clippings here in there, but with the advent of the Internet and Social Networking, I think we are and can have more of an impact!

    I am willing to do more, I donate regulary to at least 1 site, WPI until the S*** hit the fan, and I was out of work for a while, so need to re-evaluate if I should start that back up again. I need to save some money to buy a car though, and get my finances straightened out. But I would be willing to help out more in the near future, perhaps within the next 6 months to 1 year. I still work, so I only have so much energy, and need to hold onto my job!

    GG
     

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