Dear Doctors, Researchers, Authors and Advocates:
We planned to let you be the first to know, before making this fully public. However, while we were lining up volunteers to get everything in place and ready to announce, the cat slipped out of the bag. Fortunately it met with great enthusiasm. The idea seems to be charming people's socks off. So while we're not quite ready to put out a press release, we do want to give you the following Heads Up.
Coming 12 May 2010 for ME/CFS Awareness Day and Beyond:
Sock It To ME/cfs
An activist art project.
Background:Osler's Web author Hillary Johnson 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.
An engaging speaker on CFS, Dr. David Bell has this saying when there's some really great research making him happy. He says, "It makes my socks go up and down."
"Well I don't know about the rest of you, but since I've been practically bedbound for the past three years, I've developed quite an intimate relationship with my socks. I mean shoes are sort of a thing of the past and my socks have become ever so important.
They have to be just right - soft, not too tight, not too loose, not too hot, but warm enough - just right. For me the socks theme really has a lot to do with this illness. Socks and jammies. Since I've been homebound, I have found it completely unnecessary to wear matching socks - even boring to do so. My relationship with my socks has become something quite special these last few years... so while I love Dr Bell and his socks that go up and down, I think the socks are very representative of CFS."
Instead of the quilt blocks of the AIDS quilt, personalized socks 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, decorated with felt pens, fabric paints, patchwork, photos, appliqué, quilting, beadazzling, embroidery and even, of course, knitting.
How socks will be contributed:
Anyone can send in a sock in honor of a person with ME/CFS. Accompanying information can include name or nickname, the year the person became ill, if a child their age at onset, if deceased the date of death. Identifying information on socks, and photos of socks, will be kept in a searchable database so people can look up their loved ones' socks on our website.
Those who can't make a sock for themselves can contact us: volunteers will make sock "blanks" that we can send people to decorate themselves or, if too ill to decorate, one of our volunteers can decorate a sock on their behalf.
Individual socks will be firmly attached on long sections of sturdy webbing to form garlands.
Garlandscan be hung up at conferences or in public places the same way the AIDS quilt has been displayed laid out at the mall and in 12 x 12 blocks at various venues worldwide. The sock garlands can also be carried by marchers in parades, strung between poles. "Wind socks" offer another option to parade with and create small displays. Washington DC
Donations will help cover costs from postal fees and display permits to web hosting and sock materials. Any additional funds raised over costs will be donated to research and patient services projects. "Sock hops" can be held, where healthy people dance to raise funds. We will be "socking away the funds" for ME/CFS. People will soon be able to show their support by purchasing t-shirts, mugs, buttons, mini-sock lapel pins, key chains and of course socks.
Grass Roots and Cooperative
This doesn't have to be an enormous project. The idea was created by people who are chronically ill and have little energy. 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 us with happiness and we hope will engage others, too.
Given the number of people with ME/CFS in the world, and the possibility of healthy volunteers joining in, this could grow huge. If it does, that's fine, too. We can 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. Regional chapters might eventually start up to help local sufferers make and send in their socks, to arrange for local displays, and to host local fundraisers, sock hops, parade contingencies and such. We'll link any regional chapters from our website and list their display events on our calendar.
There is plenty of room for helpers with any sorts of skills to hop aboard. If you, or anyone you know, is interested in assisting with the project, please put VOLUNTEER in the subject line of an email to SockIt2MEcfs@
gmail.comand our volunteer coordinator will be in touch.
Please contact project originators. Siobhan McElwee at talkingfox@talkingf
ox.comand Kassy Fatooh at creekfeet@gmail. comwill be delighted to receive your questions and input. Our website is under construction but will be up and running soon: http://sockit2mecfs .org/will welcome your visits.