Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
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#MillionsMissing Round-Up: Three More Days!

Discussion in 'Action Alerts and Advocacy' started by JaimeS, May 22, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Hello, everyone! It's only three days until the #MillionsMissing protest, so it's time to review what's gone on so far, and what you can do to help ensure we are heard by our governments!

    Locations:

    So, your protest has gone out into the world and is now in a dozen different locations.

    Locations now include:
    Click on the links above to find out more about the protest closest to you!

    Shoes:

    You may have heard that we are collecting empty shoes to represent those who cannot protest. The campaign has been wildly effective:
    [​IMG]
    The first 'crop' of shoe packages, in Paige's trunk -- THANK YOU MAXONS FOR WORKING SO HARD TO LABEL THESE!


    Last estimate for number of pairs of shoes was in the 300 - 500 range, and that's just for the protest in D.C. Some satellite protests have chosen to send their shoes to D.C., and some are collecting their own shoes (London).


    Protest Demands and Press Release:

    We released the #MillionsMissing Protest Demands, with four main goals for the future of ME/CFS in the U.S.:
    1. Increase research funding and program investments for ME/CFS commensurate with the severity of the disease: $250 million per year.
    2. Accelerate clinical trials for ME/CFS (there are no current FDA-approved medications for the disease).
    3. Disseminate accurate medical education and clinical guidelines to end the spread of harmful, erroneous information about ME/CFS.
    4. Provide HHS leadership, oversight and a serious commitment to urgently address ME/CFS.
    We have finished our press release to help educate the press about ME/CFS and the issues we face as a community.


    Petition:


    Mary Gelpi has added her voice to the call to make funding for ME research commensurate with disease burden. As of this posting, she has nearly 35,000 signatures. Sign today, with easy posting to social media. Ask friends and family to sign as well. A few minutes of your time could make a huge difference!


    Fact Sheets:


    There are two fact sheets, one for general use and one specifically for Australian protestors, both located here; for our French-Canadians, we have a French translation of some #MillionsMissing materials here. (Presumably, for the French themselves as well, though we don't happen to have a protest in Paris. ;) )


    Posters, Media, and Branding:


    Located here, we have a bunch of amazing posters and logos for you to download or link to on social media, as well as the fonts we use to make all the #MillionsMissing look cohesive. One of my favorite ideas:

    [​IMG] .... [​IMG] .... [​IMG]

    The person who created these is also doing something phenomenal: if you submit a photo to her and tell her what you are missing, she will create a similar image of you being erased from your own life, to be posted to Instagram. Please go here to read the details on what to send our artist. We are especially looking for photos of gentlemen, because this illness is so prevalent in women that I think at this point we may only have one or two of men. We are happy to do more lady-images, but ladies, please poke your male friends with ME/CFS for this one as well.

    You can also put this filter over your profile photos:

    upload_2016-5-22_11-53-17.png

    There are really easy directions on how to do so here from your phone, or you can just use the Twibbon, which does it for you for Facebook and Twitter with the touch of a button. This is a really easy way of showing you support for the #MillionsMissing protest!

    Put out Your Shoes:

    Put your shoes out on your front porch or by your front door to symbolize how far you can travel with this illness and snap a picture. Post to social media -- Instagram, Facebook, and Twitter -- with the hashtags #MillionsMissing and #putoutyourshoes !


    Show your support virtually:


    There are a lot of ways you can support #MillionsMissing, even with a very small energy envelope. Check out the Virtual Protest today!


    Send the Congressional Pack:

    Send your elected representatives the Congressional Pack from the Blue Ribbon Foundation.
    The Congressional Pack includes a special version of their documentary The Forgotten Plague. Learn more about the Congressional Pack here, or send a Congressional Pack now.

    These may not arrive before the protest if you send one today, but carrying this out still spreads awareness about our illness long-term.


    Order the #MillionsMissing Tee Shirt:

    W
    e've designed a tee to go along with the protest! Whether or not you are attending, you can purchase one at our Zazzle store.

    If you've been holding off because Zazzle is pricy:

    • If you know that your organization would like to purchase a few shirts, you can get a significant discount... or just go in with friends.
    • Today (5/22) would be a great day to order one: Zazzle is having 15% off of everything today! Just
      enter the code: ZAZZARTDEALS at checkout in the "Promo Code/Gift Certificate" box to get this discount. This will save you over $5 per shirt!
    Donate to the Protest:

    This protest has grown beyond any of our wildest imaginings. If you can help, please consider donating today.
    Our fundraising goals have grown as this protest has grown! If you donate, please also consider posting the donation request to friends and family you think might be interested as well. Every little bit helps!

    _____________________________________________________

    On a personal note, I continue to be bowled over by everyone's talent, generosity of spirit, and willingness to work hard to achieve change, especially in this particular patient population.

    If I've left out any important developments, all I can say is that there is so much! Feel free to add additional recommendations in comments below, and thank you again to everyone for all your hard work!

    Jaime
     

    Attached Files:

    Last edited: May 24, 2016
    Rebecca2z, Yogi, Kati and 20 others like this.
  2. Sasha

    Sasha Fine, thank you

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    https://www.facebook.com/SolveMECFSInitiative/posts/10153626002212108
     
    Yogi, Kati, Dolphin and 6 others like this.
  3. dannybex

    dannybex Senior Member

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    Tons of shoes and about 40 people (so far) will be at the protest in Seattle. :)
     
    Yogi, *GG*, Kati and 15 others like this.
  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    If anyone wants to do Google ads for MillionsMissing this voucher gets you £100 for the price of £25. Probably best to check if MEActNet have official wording they want used, but could base on tweet wordings
    http://www.google.co.uk/adwords/?ch...gdn-aw-1f_102386339335@google adwords website

    I did an experiment for May 12th with Facebook and Twitter ads which I was pleased with value for money especially for Twitter. For example one of the ads targeted followers of medical unions and the cost per engagement was just 4p. You can read more about my little experiment here: https://tipsforme.files.wordpress.c...witter-ad-experiment-for-me-awareness-day.pdf
    And more about the background to it here: http://forums.phoenixrising.me/inde...s-persuasion-and-reframing-me-awareness.1956/
     
    Kati, rosie26, ahimsa and 4 others like this.
  5. Silencio

    Silencio Senior Member

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    This is awesome.. @Jenny TipsforME Thank you for sharing. I will look into it. I'm doing the site and social media coordination and I haven't had time ro even think about this!
     
    rosie26, ahimsa, Jennifer J and 2 others like this.
  6. Silencio

    Silencio Senior Member

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    @JaimeS.. I would have to be a Facebook admin to do this. We could do Facebook and Instagram ads. Do you have time? Jen still hasn't added me...
     
    Jennifer J and JaimeS like this.
  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    If you're doing Facebook Ads a key practical point is not to have images with text in them (put the text in the heading and description). They let me run images with text but then sent me messages saying they were charging more and showing them less because of it. I didn't have spoons left to change this but if you avoid the error in the 1st place it will be fine.
     
    Jennifer J and JaimeS like this.
  8. Keela Too

    Keela Too Sally Burch

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    SickOfSickness and Jennifer J like this.
  9. lnester7

    lnester7 Seven

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    Jennifer J, JaimeS and Keela Too like this.
  10. Keela Too

    Keela Too Sally Burch

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    I think we need an ME Action admin to add the details to the page created for the Belfast event. Or if there is a way I can do it... I'll await instructions. :)
     
  11. JaimeS

    JaimeS Senior Member

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    @Keela Too -- I got a somewhat opaque email about that, replied to the sender with something that basically said, "huh?" and hadn't received a response yet. I've been trying to convince everyone to send asks in six-question format: who, what, when, where why and how, where 'how' is which platform they'd like the info on. Unsurprisingly, it hasn't really caught on! ;)

    Generally emails go, "Jaime, can you put the thing with the stuff re: what we discussed yesterday?"

    LOL!

    Will be up soon.

    [EDIT: Up now!]

    -J
     
    Last edited: May 23, 2016
    Sasha likes this.
  12. JaimeS

    JaimeS Senior Member

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    @ellesbelles -- if you let me know what to do, I will, as an editor. But I still can't add you myself, as I'm not an admin.

    -J
     
  13. JaimeS

    JaimeS Senior Member

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    @ellesbelles take note!
     
  14. Keela Too

    Keela Too Sally Burch

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    Thanks @JaimeS
    Do you have enough information now for our event? If you follow the link to Facebook there is more info. We are tying it in with our conference. I did the graphics and the flyer so I can email them to you if you need them. :)
     
    JaimeS likes this.
  15. Keela Too

    Keela Too Sally Burch

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    Oh YAY - see it now. Thanks @JaimeS :)
     
    JaimeS likes this.
  16. JaimeS

    JaimeS Senior Member

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    Check it out, Keela, and let me know if you think any info is missing that people should have. I'm pretty fried right now, my logic circuits are not operating at full capacity!


    ....uh, date and time and location would be nice. Added! ;)

    [Edit: prettied it up, some. Let me know if you think it's too 'busy' now, but I really think that knowing who's speaking is going to draw more attention, given the names!]

    -J
     
    Last edited: May 23, 2016
    Keela Too likes this.
  17. JaimeS

    JaimeS Senior Member

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    A THING I LEFT OUT!

    Shoe pictures.

    Please snap pictures of your shoes on your front porch to show that is how far you can go with this illness.

    Then, post these images to Facebook, Twitter, and other social media with the hashtags #MillionsMissing and #putoutyourshoes

    Thanks!

    Jaime
     
  18. Sasha

    Sasha Fine, thank you

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    https://www.facebook.com/OpenMedicineFoundation/posts/840967969340959
     
    Comet and JaimeS like this.
  19. Keela Too

    Keela Too Sally Burch

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    Thank you so much JaimeS - much appreciated. What you have put up is excellent.

    We also have this flyer, but I think what you've done is fine:

    [​IMG]

    and

    [​IMG]
     
    Yogi, mango, JaimeS and 3 others like this.
  20. JaimeS

    JaimeS Senior Member

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    .....you guys darn well better be writing some pieces up! DUDE, that LINEUP.
     
    Keela Too likes this.

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