- Messages
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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
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
