• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

December Submissions for Groundswell Campaign/The Exit Project!

Messages
7
Hi all,

I'm December now, and The Exit Project is accepting December submissions for the Groundswell Campaign.

Please take a look at the amazing submissions we had for October and November to see what the campaign is all about & get inspired:
http://www.theexitproject.org/

Help us grow the campaign! There are three ways to help:
- Post The Exit Project to your Facebook page (or Twitter, etc.)
- Do a December submission!
- Alert the media to The Exit Project

To submit (bring on the broken holiday themes! bring on the image of two Menorahs casting a shadowy X over your sick body, or the Christmas lights in an X over a big sign about XMRV that you wear while lying down in the middle of the mall, or the rolls of holiday wrapping paper forming an X as you lie there too confused to wrap your presents) follow the guidelines below. Please note all submissions should contain: a person lying down, and something in the shape of a letter X. If you look at the existing pictures, you should get an idea of what people have done so far -- but please feel free to make your actions PUBLIC (it's a great time to be visible with a lot of people out shopping) and CREATIVE if you are able to do so.

All you need is a camera, the ability to write one paragraph, and a little creativity. Join in -- the more the merrier. -- 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