Organizers: Robert Miller, Rivka Solomon, Charlotte von Salis* (Contact: email@example.com)
On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families:
• Now is the time to let our federal health agencies know we are expecting big changes.
• The more they hear from us now, the more they'll listen to us next time we meet.
• Our "Time for Action" campaign is advocacy made easy - yet it will have a huge impact.
• We ask patients, their families and friends to email, call and/or fax NIH Director Francis Collins and NIAID Director Anthony Fauci with this same, simple question every day, starting today. (Robert is tracking patient response, so please Cc: emails to Robert Miller at: firstname.lastname@example.org)
* * * *
Dear Directors Collins and Fauci,
What have you done for ME/CFS today? Patients and their families are waiting.
Name: John Doe (or John)
Location: City, State
Time: Sick XX years
National Institutes of Health
Director Francis Collins
National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
For inspiration, here's Rivka's "How To" video.
* All three organizers have been very ill with ME/CFS for more than 20 years. Robert is a former “fire boss” from Utah and currently an Ampligen patient of Dr. Peterson; Rivka is a playwright from Boston (see her September “Mini Demonstration” video); and Charlotte is a lawyer in the Washington, DC area.
“We won’t get fast-track clinical trials or funding for centers of excellence by waiting for them – we need to demand them,” says Rivka. The NIH needs to get the message that patients and their advocates “are completely fed up with the lack of governmental response to ME/CFS and are prepared to act, just as [AIDS patients] did,” says Charlotte. (See Wikipedia on the history of the AIDS Coalition to Unleash Power – ACT UP).