Organizers: Rivka and other smart, dedicated butt-kicking ME/CFS patient advocates
The "Change the World in 7 days" action campaign has been aborted because trusted sources told us that it is not helpful to our cause, our collective community cause. So please do not publicize or do this action, and we'll see you next time, on our next action campaign!
Rivka and the other butt-kicking patient advocates who worked on this campaign effort
ME/CFS PATIENTS: CHANGE THE WORLD IN 7 DAYS
December 8-14, 2010
December 8, 2010: In 7 days, the FDA meets to discuss whether and how to protect the U.S. blood supply against XMRV and related retrovirues. Let's send them daily emails for those 7 days, and change the world!
Video inspired by this campaign: http://www.youtube.com/watch?v=pFE8amRRzUM
The Pep Talk
After what seems like years of stagnation, our collective efforts are yielding recent stunning successes we can really brag about.
- Together, via the MCWPA, we bought and placed a huge ad in the Washington Post, the one newspaper all elected and federal officials read, alerting all to the dangers of the retroviruses linked to our illness.
- Prodded by our community's email and Facebook messages, the American Red Cross publicly announced its ban on all blood donations from ME/CFS patients, thereby acknowledging our illness is likely a transmittable infectious disease that can ruin lives.
The New Action You Can Take
Now, because the timing is just right, we have the opportunity to do even more. In the next 7 days, we can change the world. The FDA's "Blood Products Advisory Committee" meets on Dec 14-15th. They will decide if they should follow the lead of the American Red Cross -- and even take it a step further -- at their own blood donations centers. After decades of the CDC psychologizing and delegitimizing us, an FDA ban would finally give us the validation we deserve. For the next 7 days, send a daily email to each committee member, letting them know how strongly we feel about this blood supply issue.
The Sample Email
Sample email below, or draft your own. Contact info also found below, including email addresses of all committee members.
To: [Lots of email addresses; see below.]
Subject line: [Use your imagination. Change daily to get help past spam filters or keep the same for simplicity. Sample: Protect the Nation's Blood Supply]
Dear Members of the FDA Blood Products Advisory Committee, and Bryan Emery, Designated Federal Officer:
I'm unable to attend on December 14-15th. Here is my official testimony. Please share with all committee members, including the Temporary Voting Members (the XMRV Blood Working Group). Please also send my below question to the FDA Consumer Affairs Department.
I'm an ME/CFS (Chronic Fatigue Syndrome) patient and I would not wish this life-stealing illness on anyone. I'm doing all I can to limit the possible transmission of my illness to the people I love. I'm asking you to do your part.
1. Immediately develop, and make available to the public, an FDA-approved test for XMRV/MLV-type viruses.
2. Require screening of all blood donations for these viruses.
3. Ban people with ME/CFS from donating blood. And add the pre-donation interview question: "Have you ever been diagnosed with Chronic Fatigue Syndrome (ME/CFS)?"
[ADD your own personal lines: If you do, the committee staff is obligated to photocopy each and every email you send and put in the hands of every committee member.]
[ADD a question: If you do, the committee staff is obligated to send your email to the Consumer Affairs Department of the FDA. They must then reply directly to you. Sample question: "What are you doing to protect the nation's blood supply from XMRV/MLV-type viruses?"]
The Contact Info:
Put all these email address (yes, all these email addresses!) in the "To" line. This list includes the FDA Blood Products Advisory Committee, the XMRV Blood Products Working Group, and some NIA Officials:
Bryan.Emery@fda.hhs.gov, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com
Click The Link Below To Populate Your Email Client With a Sample Email:
- Be Sure To Copy The Email Recipient List From Above And Update All Items In [Braces].
- NOTES: This won't work for every computer configuration and might require some formatting. It will use the default email client and account.
Click Here To Populate Your Mail Client With a Sample Email Ready For Editing. Remember to update items in [braces]