“TIME FOR ACTION” Campaign – Advocacy Made Easy for ME/CFS Patients, Their Families and Friends

Organizers:  Robert Miller, Rivka Solomon, Charlotte von Salis* (Contact: bobmiller42@msn.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: hebs1reel@yahoo.com)

* * * *

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

Contact info:
National Institutes of Health
Director Francis Collins
Email: collinsf@od.nih.gov
Cc: bobmiller42@msn.com
Phone: 301-496-2433
Fax:  301-402-2700

National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
Email: afauci@niaid.nih.gov
Cc: bobmiller42@msn.com
Phone: 301-496-2263
Fax: 301-402-3573


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).

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