The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Groundswell Campaign

Discussion in 'Action Alerts and Advocacy' started by PeggyMunson, Oct 28, 2010.

  1. PeggyMunson

    PeggyMunson

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    Hello everyone,
    I am starting a new campaign called The Groundswell Campaign and I invite everyone to submit! It's very easy -- all you need is a camera (camera phone is fine) or video camera, and the ability to write a very brief paragraph. The Campaign encourages actions both in the sheets (not meant to be dirty, but if you want to go for early-AIDS-style grit, be my guest as long as you keep it PG rated because pics will be posted online) and in the streets! Homebound and bedbound patients can participate, and those who can do more visible actions using the iconography of the campaign can participate. For background on the rationale behind this project, please read my blog post, "The Best Offense is a Good Offense: What We Need to Learn from AIDS" at: http://peggymunson.blogspot.com/2010/10/best-offense-is-good-offense-what-we.html

    The Groundswell Campaign is an action of The Exit Project (Eradicate XMRV Infection Today), an ACT-UP style organization that will serve as a clearinghouse for grassroots actions to build a groundswell of support and awareness of ME/CFS/XMRV. These are exciting times, and we have to keep ourselves visible. ACT-UP not only humanized AIDS, but never let people forget about the individuals who were afflicted, or how desperately they needed drug trials now.

    ACT-UP style actions are encouraged for the Groundswell Campaign. Images for the Groundswell Campaign can be made in private or in public -- but each image must include something shaped in the letter "X" and a person lying down. For example, one could arrange a doctor's Q-tips in an X on a gurney at a medical appointment, and lie down next to them. Or a former athlete could lie down on a baseball diamond with two bats shaped in an X and take a pic. Or a caregiver could make an X-shaped pancake and set it next to your bed. Be creative, and if you're up for being brash, be brash! It is also fine to involve bystanders (hey, if you've got cheerleaders who can spell out the letter X behind you while you lie on a bed of flowers held up by football players, more power to you), as long as one person is lying down in the picture.

    Here are the instructions -- join in!

    Peggy

    GROUNDSWELL Campaign
    An action of The Exit Project (Eradicate XMRV Infection Today).

    Who: Many ME/CFS/XMRV patients wonder what they can do to participate in activism (especially those who are homebound or bedbound). If youre got a camera (or video camera), and the ability to write a paragraph, you can do this project without much effort, and become part of a quilt of images to engender a groundswell of support for ME/CFS/XMRV. We invite all patients who are grounded by ME/CFS/XMRV (in any way) and who want to create a groundswell of support and awareness. If you're able to take it to the streets and make a more public display, even better! The most important thing is to join in.

    Why: Few people really understand how wretched this illness can get, and outsiders rarely see what homebound, bedridden, or very ill patients deal with. What succeeded in AIDS activism was depicting AIDS in all of its brutality. Until people see what it really means to be grounded for months, years, decades, they simply dont have a reason to care or get involved. This is what The Groundswell Campaign is about. We want to create a groundswell of support and show what grounded patients are capable of! We also want to show how many human lives are "X"d out by this illness (and do something to represent the fact that XMRV has infiltrated the population at alarming rates -- but you don't need to be XMRV-positive to submit).

    What to Submit: Take pictures (or video) of yourself in a horizontal position: lying flat, curled up in the fetal position, slumped in a bathtub, on a sidewalk in front of the FDA, on the floor of a subway train, sprawled across seats in a train station, on your front porch, as part of a public demonstration in which you read The Exit Project's list of demands and lie in front of the capital on top of a big chalk "X," etc. The main thing is that youre not upright. If you can get outdoors, especially in a public place, feel free to lie in the middle of a crowd at the mall, on the grass, in the water, whatever works for you or maybe on the edge of an outdoor wedding or event, where you are clearly an outsider, grounded, and viewers can see people living their lives in the distance. You can take the pic on a hospital gurney or in front of a state capital building. It is fine to include others in the picture (your family members, partner, strangers, etc.) who can be upright. Each picture should include a visible letter X for XMRV, whether you have XMRV or not you can put it on your clothes, write it on your skin, make it out of pill bottles, find a naturally occurring X somewhere in your house, draw it in the sand, etc. This will help reinforce the iconography of our campaign so it is easily recognizable, and reinforce the idea that anyone can get Xd out by this illness, and anyone can get XMRV. The more pictures we can get with visible landmarks, the better (for example, if you can take it near a political landmark or in front of a hospital or blood bank, or by a well-known tourist spot where you live). Once you take your pictures, choose your favorite shot, to go with your written paragraph. Follow the instructions below to write your paragraph. You can also submit a short video using the same instructions, and incorporating the X, in which someone (you or another person) is reading the text of your paragraph. Its that simple! If you want to do this with a group of people, you can each write a paragraph, and post a picture with each paragraph or one picture for the whole group.

    What to Do Next: After you have taken your pic or made your short video, write a paragraph on this topic: How has your life been grounded by ME/CFS (and XMRV if applicable)? What were you able to do before you got sick that you cant do now? What is one comment you'd like to make about your picture and what it represents? What would a groundswell of support mean for you?

    Or, if you do better working free form, simply produce a paragraph about what it means to be grounded, what your picture signifies to you, and what you would ask of a groundswell of support. Creativity is encouraged! But please keep it short and sweet -- this is for immediate impact, not a medical history! Let the pictures tell most of the story and imagine hundreds of them lined up, creating a groundswell. Ask your friends to do it too. We need bodies!

    If you are doing a video, read your paragraph or overlay the text onto the video.

    Just don't forget the two rules: have something visible in the shape of an X, and be horizontal.

    Where to Send: Post any videos on YouTube, then send videos or photos with text to:
    theexitproject@gmail.com


    and also to Anthony Fauci at: afauci@niaid.nih.gov
    And Kathleen Sebelius at: Kathleen.Sebelius@hhs.gov

    Also, if you can include more names, please send to any or all of these people as well:
    Margaret Hamburg at: margaret.hamburg@fda.hhs.gov
    Howard K. Koh, M.D.: ASH@hhs.gov
    Director Francis Collins: collinsf@od.nih.gov
     
  2. shannah

    shannah Senior Member

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    We participate in our email campaigns of various kinds but perhaps 'the human factor' of including a face might make a difference (everyday people not doing everyday things).

    I like a lot of things about this idea Peggy including the name 'The Exit Project (Eradicate XMRV Infection Today)'. I'll see what I can do to participate.
     
  3. shannah

    shannah Senior Member

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    "Where to Send: Post any videos on YouTube, then send videos or photos with text to:
    theexitproject@gmail.com"

    Peggy,

    What are you going to do with pictures? Are these going to posted in a grouping somewhere?
     
  4. BEG

    BEG Senior Member

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    Please check out this website: http://www.theexitproject.org/

    Do you want to take your activism to the next level? Then let Xmrv speak for you through your picture or video and your words. Remember the 2 rules: you must be supine and have an X visible somewhere in your picture.

    I can't answer that for Peggy, shannah, but I would say this, I'd be happy to have my entry splashed across the side of a bus. :eek:
     
  5. shannah

    shannah Senior Member

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    The stories and pictures are being posted at

    www.theexitproject.org

    There's 5 of them up there now. Take a peek and participate!
     
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    Great idea, Peggy! The photos look awesome.

    If you have the energy, you should post this on your blog to reach a wider readership. :Retro smile:
     
  7. PeggyMunson

    PeggyMunson

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    Hi Rebecca, I will be posting this more broadly but wanted to get some submissions up first. Thanks for posting the site, Shannah -- everyone please take a look! And send your submissions (read my guidelines above) to theexitproject@gmail.com

    Pictures are starting to appear at: www.theexitproject.org -- check it out to see what the project is all about. I just posted a new one tonight!

    Peggy
     
  8. PeggyMunson

    PeggyMunson

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    I'm looking for people in Utah, the Spokane, WA area, and Massachusetts (Boston or Northampton areas) for Exit Project efforts. If anyone knows of anyone, have them email theexitproject@gmail.com -- please forward this to anyone you know in those areas! Other public actions across the US and world encouraged -- email theexitproject@gmail.com and we will post to look for others in your area. Thanks! Peggy
     
  9. *GG*

    *GG* Senior Member

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    I work in Boston. FYI

    PS What info would be good to pass along? I tried to copy and paste info from your website, but it does not transfer. FYI
     
  10. BEG

    BEG Senior Member

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    g. - Why don't you try e-mailing her? mailto: theexitproject@gmail.com

    You may get a quicker answer.

    Everybody,

    Please get your aching, feeble and sick bodies on the floor. Put an X on yourself, have someone take your picture, and write a small paragraph. Please make this a huge display. If only we could do this together in public. If only . . .
     
  11. citybug

    citybug Senior Member

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    Does anyone have tips on making those Xs with tape, and not getting all tangled up?
     
  12. caledonia

    caledonia

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    I suggest using shorter pieces of tape overlapped to make the appearance of a longer piece.
     

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