Some of us people with ME/CFS have come up with a community public art project to raise awareness, kinda like the AIDS quilt project, only different. I'd love to get input at this very early stage in the project. Also, we will need a ton of volunteer assistance from healthy people, just like the Quilt did. So if this sparks your interest, please read on and get back to me.
Sock it to ME
for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Hillary Johnson, author of Osler's Web, has said that we need something for ME/CFS, like the AIDS quilt: something engaging and colorful and big to get positive attention.
What we want to use is socks.
Dr. Bell, an excellent speaker on this disease, has this saying when there's some really great research making him happy. He says, "It makes my socks go up and down."
Personalized socks, decorated socks, regular socks you would wear or stylized ones like Christmas stockings, will express the idea of comfort and coziness, caring for ME/CFS patients.
They can be as easy or as elaborate as their makers wish. Anyone can grab a sock and draw on it with a Sharpie, and some people will make socks by felting, quilting or of course knitting. In fact, one project initiator is knitting socks with the XMRV virus molecule shape in them.
How socks will be sent in:
We'll create a PO box to receive socks. Anyone who wants to can send in a sock in honor of a person with ME/CFS. The sock should have the person's name or nickname on it. Accompanying it they can include information like the year the person became ill, if a child perhaps their age at onset, if deceased the date of death. Identifying information on socks and sock photos will be kept in a searchable database so people can look up their loved ones' socks on our eventual website.
How socks will look:
A sock's decoration can express something about the person. Like AIDS quilt panels; which incorporate photos, embroidery, patchwork, beads, jewelry and all kinds of stuff; the socks can be wildly varied, and as simple or complex as their makers wish.
Individual socks will be attached to a rope or wide tape, like a garland. This could then be hung up at a conference or in a public place (with legal permits obtained, of course) the same way the AIDS quilt has been displayed laid out at the Washington DC mall and in 12 x 12 blocks at various venues worldwide. The sock garland can also be displayed in sections, and sections can be carried by marchers in parades, with sections strung between poles.
Donations to the project will be welcomed when it gets going: small donations could help with costs like postal fees and display permits. Additional funds raised over costs would be donated to research and patient services projects. "Sock hops" could be held, where healthy people dance to raise funds. We would be "socking away the funds" for ME/CFS. Additional funds could be raised through sale of t-shirts, mugs, and of course socks with the XMRV virus or other ME/CFS related logos. Mini-sock lapel pins will be sold cheap as possible so people can show support.
Grass Roots and Cooperative
This doesn't have to be a big huge project. It can start small and it can even stay small. It gives people with ME/CFS something proactive we can participate in. Those who can't decorate even a ready-made sock can submit their names, and others with lots of sock-making energy can make socks on their behalf. The image of the garland of bright, colorful, varied socks fills me with happiness and I hope will engage others, too.
Given the number of people with ME/CFS in the world, this could grow huge. If it does, that's fine, too. We could have multiple garlands traveling the world, the same way the AIDS quilt has multiple quilted blocks traveling the world. Healthy friends and family, and we occasionally-energetic people with ME/CFS, can contribute time and effort to keep it going.
Check out the AIDS quilt for an example of how this can work. http://aidsquilt.org/index.htm
There you have it. Got any suggestions? Can you be involved? Please get back to me here at my email or write to the email for the project: sockit2MEcfs@gmail.com