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Join the National PR Campaign for ME: Power to the Patient (P2tP)

Discussion in 'Phoenix Rising Articles' started by Nielk, Nov 20, 2014.

  1. vli

    vli

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    I hope my post above did not offend. Maybe I can put this in another way.

    My non-ME friend (who after all is a typical member of the target audience of this initiative) first read the site info about the million sufferers then read the site's call to sign the petition. He remarked immediately that for a population of a million sufferers he was surprised that only 5600 have signed the petition if it was so important. The conclusion he could see people drawing (although he did not draw it himself) was that ME can't be that bad--can't be that life-shattering--if only 0.5% of the patient population bothered to sign an important petition. Regardless of our intentions, that is the message that comes across and I am sure none of us want to have that. How can we prevent that?!
     
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  2. Wally

    Wally Senior Member

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    @vli,

    I think you have some valid questions/comments that are worth discussing, but you may not receive back many responses right now because the CFSAC meeting is taking place today. I will try to respond back to you with my thoughts later today after the CFSAC meeting is finished.

    Wally
     
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  3. vli

    vli

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    Thank you Wally--sorry I was not even aware of the CFSAC meeting today. Apologies!
     
  4. Wally

    Wally Senior Member

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  5. caledonia

    caledonia

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    This is also in answer to your other post. I believe the 85% undiagnosed figure comes from a prevalence study done by Leonard Jason in 1999.

    If you think think the petition it looks bad, it would be easy enough for me to take it off. It's out of date anyway. I need to update the "call to action" area too.
     
    vli likes this.
  6. vli

    vli

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    No, you should not make a big change to the site like that simply because what my one friend thought. It sounds as though you are about to add new things to the "Take Action" tab however. Is that so? If so, then I for one would be very keen to see how we can help aside from signing up and spreading the word. Thank you so much!
     
  7. caledonia

    caledonia

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    Donate to the National PR Campaign for ME https://meadvocacy.nationbuilder.com/donatepr

    This is all great feedback by the way. It sounds like I do need to refine the home page a bit.
     
  8. caledonia

    caledonia

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    Check out the website http://www.meadvocacy.org/ and let me know what you think. I removed all the Call to Action stuff because it's actually outdated. The main thing I want people to know about is the National PR Campaign for ME.

    Did you know you can click on the large banner with the red megaphone and it will take you to more info about the Campaign?
     
    vli likes this.
  9. vli

    vli

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    Yes. Fwiw it looks great to me!
     
  10. caledonia

    caledonia

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    Super! Thanks.
     
  11. gretac

    gretac

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    @caledonia , I really like this idea of @Valentijn 's: it answers the concerns I expressed over at your ME Advocacy website, which I'm reposting here:
    I applaud the energy (lol!) behind this. Most of this looks awesome.
    I have two - turns out, three - misgivings:

    First, I am concerned about the use of actors - other movements have been discredited by the presence of "outside agitators" and I don't want the information that actors are instigating or populating protests to discredit us, which it would so easily do.
    Second, - darn, in writing the first one, I forget what the second one was. CFIDS/ME brain...
    Oh! Maybe it was this: if they are cornered by media to give reactions, I'd be concerned that they would not give out accurate information about this condition.
    Third - this was the second one! - concern that the media would distort active protestors as representative of PWC/ME: more of, "They look perfectly healthy to me!"

    So what about this: Is it possible to educate the actors thoroughly about ME so that they have a true, real-life understanding and concern about our illness? That way they can pass the straight-face test that they have friends and acquaintances with ME, and (hopefully, from their education) they would have a genuine concern for us. So that they actually become advocates, not actors. Maybe they could be trained at least by watching one of the PWC/PWME videos out there.
    And it should be clear that the people out there protesting are advocates, not typical people with ME!!​
     
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  12. caledonia

    caledonia

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    On this same theme, I am finding I'm having to put together an entire marketing campaign from scratch just to fundraise for a marketing campaign. There are a zillion blogs, websites, forums and Facebook groups scattered everywhere.

    It's hard to tell what has the most reach and what is going to have to the most impact.

    If anybody has any ideas for where I should be doing promotion for this campaign, I'm all ears!!!
     
    vli likes this.
  13. vli

    vli

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    Hi @caledonia --are you in touch with Jen Brea?
     
  14. caledonia

    caledonia

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    Yes, a bit. She has donated, but has not responded to my request to help with promotion. I'm not sure what she could do anyway outside of putting us on a Thrive Show? If we have a demonstration, she may be able to film it for possible inclusion in her documentary.
     
    vli likes this.
  15. snowathlete

    snowathlete

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    i have a list of global charities, groups, blogs somewhere. Bit out of date, a year? But it might be handy? If you'd like it then let me know and I'll dig it otu.
     
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  16. caledonia

    caledonia

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    Yes, especially if it has hyperlinks and Facebook groups. I'm working on an spreadsheet right now.
     
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  17. vli

    vli

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    hi @caledonia I only thought of Jen Brea because I thought there might be overlaps between what you are doing and what she is doing for the campaign she aims to launch in Feb http://meactionnetwork.org/. Do you know if there are overlaps??
     
  18. caledonia

    caledonia

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    As far as I can tell, ME Action Network is an app for individual advocates to launch their own campaigns. It's still kind of a mystery as to what it is.
     
  19. vli

    vli

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    oh it's a phone APP? nothing like what I thought then...
     
  20. caledonia

    caledonia

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    I don't know about phone app, but web app? Like we have a One Click app set up on our website to send protest letters. So like a collection of apps that assist with advocacy? Petitions, letters? I don't really know.
     

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