My sister (the PwME) and I held a “Dining for Dollars” dinner this weekend and we encourage others to use this idea to support ME/CFS researchers of your choice. We invited nine friends via email (see example email below), and requested that they donate $50 each for the dinner, which we gave to the Center for Infection and Immunity. We raised a total of $1,450. It’s something your healthy friends and family can do for people with ME.
Jen Brea’s TED Talk makes a powerful marketing tool and it gives one an opportunity to educate folks about ME.
Unfortunately, my sister could not attend as she retires for the day at 5 pm, but she made the beans and, of course, donated.
“Dining for Dollars” is a fundraising idea from the AIDS era and we hope to spread the idea by posting the results of our own dinner held this past weekend. We hope to start a movement for ME/CFS.
Menu: Smoked Brisket with spicy bbq sauce, pinto beans, southwestern coleslaw, chiles rellenos, red and green enchiladas, homemade vanilla and chocolate sauce for dessert. I also served cocktails beforehand.
Subject: Dining for Dollars for CII (Center for Infection and Immunity)
My sister Susan and I am holding a fundraiser for Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) this Sunday, February 12, at 6pm. “Dining for Dollars” is a fund rising idea from the AIDS era and we plan on using the dinner to spread the idea to others by posting some pictures and a blurb on several of the largest patient advocacy forums.
Government research dollars for this devastating disease are few and far between and there are now a number of private research groups making progress on this disease. We like Ian Lipkin and Mady Hornig’s project at the Center for Infection and Immunity at Columbia University. Lipkin’s and Hornig’s work on mapping the micro-biome has relevance for many other diseases as well. Please see the attached flyer…. some of the links I’ll repeat in this post.
We are suggesting $50 per person, made directly to http://microbediscovery.org. Columbia will send you a tax deductible letter in return. Additional information about the project is on the site.
ME/CFS has a strong advocate in Jennifer Brea. Please take a moment to view her recent TED Talk.
Jennifer has also produced a documentary called “Unrest” on the disease which won much praise and an award at the Sundance Film Festival. Theatrical viewing should be late summer or early fall and PBS has picked up distribution for viewing in early 2018 on their series “Independent Lens”.
Won’t you join me for dinner on the 12th?
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the