Poet, award-winning writer, editor of the groundbreaking anthology Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, and ME/CFS/XMRV patient/activist Peggy Munson has just launched The EXIT Project (Eradicate XMRV Infection Today), a broad-based group of individuals who do ACT-UP style actions to raise awareness about ME/CFS/XMRV. Their first projects include:
GROUNDSWELL Campaign 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. 
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.
I KNEW YOU WHEN Campaign For this project, participants are encouraged to share an old photo of the healthy (pre-illness) ME/CFS/XMRV patient – perhaps the two of you together – as well as an “after” photo of the ME/CFS/XMRV patient now, and a photo of yourself with your full life to contrast (that is, with your kids, house, job, trip to Jamaica, etc.).
MAKE UP For Lost Time Campaign (Men Asking for Kindness, Empathy, Understanding, & Progress for ME/CFS/XMRV) In this campaign, male-identified people will don make-up in a way that makes a statement about aspects of this illness, and talk about what they would do to “make up” for lost time (for themselves or for a partner/friend/family member with ME/CFS) if the FDA would fund drugs trials for XMRV/ME/CFS NOW.
Why? Masculine folks are underrepresented in ME/CFS awareness, and the illness has been traditionally stereotyped as a women’s disease. The NIH has ghettoized their ME/CFS program to the Office of Research on Women’s Health! As part of a larger, ACT-UP style campaign to throw stereotypes back into the government’s face, this campaign makes a vivid and unexpected statement about ME/CFS/XMRV and demands that the CDC/NIH/FDA “make up” for lost time NOW, start drug trials, and immediately release drugs (like Ampligen) that could help patients with ME/CFS!
Please join these actions of The Exit Project (Eradicate XMRV Infection Today)!!!! theexitproject.org
Why do we have to be lying down? One of the unique features of CFS is that we often appear well when others see us. While the majority of us may be largely homebound, we are not bedridden. This would just seem to reinforce the misconception among my family (not friends as I lost those many years ago) that I must not be sick since when they see me *on rare occasion) I’m not lying down and I’m trying to be active and social. It’s ok to show pictures of us on our backs, that’s how we live, but we don’t need the overly dramatic images shown above – we need to create an awareness that a smile and a friendly greeting and the appearance of wellbeing doesn’t mean we are not very seriously ill and seriously incapcitated.
I’m not too keen on this approach either. It doesn’t have the intended effect. The folks don’t really look like they’re suffering, just lying down. It might even reinforce the idea that they’re whining.
Besides, change is already underway in major leaps and bounds.
Did you see this incredible panel lineup for CFS grants? Cort wrote it up. Amazing people on board.
http://www.forums.aboutmecfs.org/content.php?263-The-Stars-Begin-to-Align-at-the-NIH-A-CFS-Review-Panel-For-CFS
The times are already a-changing. You have phenomenal virus hunters like Ian Lipkin on the case now. The sea change is already underway. It’ll still take years to really parse out what XMRV means, who has it, whether its causative or a co-factor, what pathogens are synergistic, whether it stays latent in some or many, and what drugs might best treat it. *AND* it’s a strange virus, or whatever unknown virus works with it, it integrates into the genome and that to me means that for some who’ve had it for quite some time, there are irreducible changes. It could have integrated and permanently upregulated or activated some unfortunate genetic legacy, and even if quieted in terms of active replication, one can’t get it out of one’s genes.
A bigger issue for me is that under the rubric of CFS fall so many different patients, with lyme, other chronic infections, toxic exposures that crashed their immune systems, bad mcs, bad viruses. It’s not one entity. And many of us will still be struggling and trying to find the best treatments and lifestyles to help us function, long after “X” is figured out. Nobody’s responsible for that. That’s just life in modern times with some bad infections out there, tickborne and viral, and a lot of toxic stuff in the world that is making so many of us ill.
show the kids afflicted and list all the gunk….many of the siblings and parents have also tested positive but all present in different ways.
i mention kids as kids ALWAYS get attention and it also makes the point that this stuff is congenital.
as we have all know, we have to throw ALOT of spaghetti at the wall until something really sticks….so keep the ideas coming!!
a post note: i was starting to get some really annoying chemical sensitivities…well strong perfume at the gym still makes me want to hurl (all i do is the precor/stretch as my body can spasm if i over do it and i carry a 7 YO around alot) but 2 weeks of Liver Life and I walked down the cleaning aisle of the grocery store and it didn’t bother me…and I REALLY SLOWED DOWN AT THE EVIL CRAP. Will have to try shop rite and pinch myself to see if it’s real…but do feel better and starting to be able to sleep, which has been my biggy!! Also doing calcium d-glucarate and OLE…but trying to clean up the toxicities as i was starting to feel like the blueberry chick in willy wonka on abx…i’ll take a herx but that wasn’t what was happening. As a family, we got all the uninvited guests and my kids took a huge hit.
Hi all,
I tried to post yesterday but my comment vaporized, and I’m too ill now to write more than briefly.
But briefly:
– Dr. Bell stated lately that in his decades of treating ME/CFS patients one thing stood out as characteristic of those who had improved/recovered from the illness: the ability to function in the upright position.
As much as the image of the fainting hysteric has been used against us, we have to re-appropriate it and turn it around, as AIDS patients did with images used against them. This means taking creative liberties! If you want to lie on top of a 1969 vintage VW bus with flowers forming an X on the ground around you and someone taking an aerial photo, that works! If you want to take a picture all dressed up as if you’re going to work with a briefcase and lie down in the financial district during rush hour, do that. The important thing is to tell the story you want told, in the image and your brief paragraph submission.
William, you might want to check out the “Make Up for Lost Time” campaign — it does *not* involve lying down . I won’t be posting submissions for that yet but will soon.
Submissions from kids are very very welcome. I think the picture of the kid in a Halloween costume unable to go Trick or Treating is heart-wrenching and courageous. It is hard to argue with wanting a simple pleasure in life like knowing people beyond online monikers and going out for Halloween.
And Jen, I’ll believe progress is happening when I see numerous clinical trials and when the WPI starts getting government grants galore.
Peggy
The classic problem with any of these illnesses (chronic lyme/ME/cfids, all of which overlap in ways we don’t understand yet and probably vary on an individual basis) is that we look fine. Even Laura Hillenbrand looks beautiful, maybe a little tired but that’s all, in her photos in recent writeups.
Therefore, unlike AIDS where people wasted alarmingly, had unsightly kaposi’s sarcomas, pneumonias, and multiple obvious infections, and where visuals thus worked, visuals may not be the strongest approach here, may in fact be the weakest–as that has always been the problem. “You look great!”
Re: clinical trials, I’m sure they will come. Unfortunately, and this has always been my opinion, bench science in order to be good takes time. Studies have to be verified. Scientific consensus has to emerge. Markers have to be established. Drugs have to be tested in vitro and in animals before on humans. The three drugs available now for XMRV, seem to be helping a portion, making a portion worse, and leaving a portion unchanged from the smattering of anecdotes.
The scientific community at large is working on this now, with some very fantastic researchers. And even so, there are so many causes of the illnesses that look so similar and bring us all to the same online places, that “X” alone is just not the answer for most of us, imo. For some, yes. But for many others, no. The state of lyme treatment is still a disaster, and tbd is probably a major player in many of our problems.
Laura Hillenbrand looks great because the pictures are taken during rare upright moments. If you read the text of the articles, it’s clear she isn’t upright much, like most of us with ME/CFS. We don’t see her at her worst because she likely had a professional take book jacket photos.
Remember, also, that Jamie Deckoff-Jones and her daughter thoroughly treated Lyme and coinfections before beginning antiretroviral therapy for XMRV. I think it’s unlikely with Judy Mikovitz herself saying that Lyme is a secondary infection of XMRV, and Lyme docs interacting with XMRV docs at ILADS, that Lyme is going to be ignored as a piece of the puzzle. As with AIDS, secondary infections will all probably need to be treated.
Peggy
I think laying down with serious and challenging look is appropriate. Isn’t that the reality of this illness?