Friday, November 12, 2010


As a follow-up for my call to action (see last post) please check out The Exit Project! Do you want to do simple activism right now that you can do from your home or bed (or in the streets)? Then submit to The Groundswell Campaign (guidelines below) -- and please volunteer to help by emailing via The Exit Project's website:

Let's make it global -- public actions are encouraged too!


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 you’re 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 don’t 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 you’re 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 X’d 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. It’s 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 can’t 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:

and also to Anthony Fauci at:
And Kathleen Sebelius at:

Also, if you can include more names, please send to any or all of these people as well:

Margaret Hamburg at:
Howard K. Koh, M.D.:
Director Francis Collins:


dewluca said...

Thanks so much for your work! I just discovered "Stricken". Thought you might want to know that Routledge (who bought Haworth and is part of Taylor & Francis) has the editor of Stricken listed as "Molly Munson" . . . is that a name you use? You can see their page for the book at:
Thanks again for your inspiring work and for including queer voices in Stricken. I've been reading about CFS/CFIDS for 8 years and this is the first time I've seen lesbian/queer voices included in an out way.


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