FYI-- Here's my letter to Criona Wilson
Hello Ms. Wilson--
I have read the tragic story of your daughter's death and feel deeply saddened by it.
I too am long term survivor of ME/CFS (33 years), so I have a keen understanding of this illness and many of its often heart-breaking ramifications.
I am part of a large online ME/CFS forum, of over 600 active members. You can access the forum at this link to know more about us:
http://www.forums.aboutmecfs.org/forum.php
Some of our forum members have currently been working on a big community art project, called Sock It To ME: a community public art project to raise awareness and funds for CFS. All participants will be requested to donate an artistically created sock of their own making or choosing, which will all be attached together in garlands for public display in various locations in the US, and hopefully abroad.
You can read about our plans on this thread:
http://www.forums.aboutmecfs.org/sh...-raise-awareness-and-funds.&p=59639#post59639
We want it to be a BIG STATEMENT about ME/CFS--like the AIDS quilt did for AIDS patients.
Right now our project is in its infancy stage, but moving along at a steady pace. Launch date to announce it publicly is set at May 12th.
The reason I am writing to you is that we were hoping to have your daughter be one of the people we dedicate this project to, and we would like to request your permission to do so. There is another young woman, whose mother we are trying to reach as well.
If we could get a sock from each of you, Sophia's could hang on a UK garland and the other girl's could hang on a US garland.
Please let me know if this is okay with you.
Thank you, XXXXX