Sunday, December 8, 2013

Demos in San Francisco and Washington, DC - Can you come?

Below is a Call to Action posted by Susan Kreutzer on ME/CFS Forums. Anyone who is in the Bay Area on Monday or in Washington on Tuesday is welcome to attend. The demonstration will take one hour. Afterwards, Susan will be hand delivering three petitions to HHS and to her Representatives. (You can still sign them!)

West Coast Event:
WHEN: Monday, December 9th, 10AM
WHERE: 90 7th St., San Francisco

Hope to see you there!
To All My Fellow Canaries, 

One of the best ways for multiple voices to amplify a message is by taking the message out into public view using our “outside” voices. It sure feels to me like the ME patient community is long overdue in staging a public demonstration to shine a spotlight on the U.S. Dept. of Health and Human Services (HHS) contract with the Institute of Medicine (IOM), as well as addressing the pitiful amount of funding and resources that the U.S. Government has allocated to this illness. 

If you feel the same way as I do and you are interested in joining me in San Francisco on December 9th and/or in Washington D.C. on December 10th for a series of demonstrations to very publicly raise your concerns with the IOM/HHS contract and funding for this illness. Then I welcome you to join me in together raising our voices in support of ME (CFS) patients throughout the world.

I am handling the logistical side of the planning of these demonstrations, which includes the location in downtown S.F. of the Regional Office of HHS, the headquarters of HHS located in Washington D.C., and the U.S. State Capitol and White House, also located in Washington D.C. 

I will have props to assist us in getting out our message, as well as alerting media outlets of these planned demonstrations. On December 10th, I will also be hand delivering the online IOM/HHS petition (on behalf of Patricia C.) to HHS Secretary Kathleen Sebelius, select members of Congress and President Obama at the White House. See,

I will be in S.F. in front of the HHS S.F. office on Monday, December 9, 2013 at 10:00 am. The following day (Tuesday, Dec. 10th) I will be in Washington D.C. at HHS headquarters at 9:00 am. At approximately10:00 am, I will move a short distance up the street to the nation’s Capitol. Finally at approximately 11:00 am I will move to the White House located approximately 12 blocks from Capitol on Pennsylvania Avenue. I will try to capture the events on both of these days in photographs and on video (subject to the number of extra pairs of hands available on either of those days) to share these activities with patients (and others) who want to support these demonstrations, but are unable to attend in person.

For more details about the demonstrations scheduled for December 9th and 10th, please contact me through this thread on the Phoenix Rising Forum, or the posting I have made on the MECFS Forum, or directly through my e-mail address at

In addition to the HHS's headquarters in Washington D.C., there are 10 other regional offices spread across the U.S. in the following cities: 1) Atlanta, 2) Boston, 3) New York, 4) Philadelphia, 5) Chicago, 6) Kansas City, 7) Denver, 8) Dallas, 9) San Francisco and 10) Seattle. See, and If you are interested in holding a similar demonstration at one of these locations, I would be glad to share with you the steps required to set up such a demonstration..

No matter what size of a group shows up to demonstrate, even a small group can make an impact on a wider audience if their message is delivered with clarity and passion. We need to be able to find ways to interest the media into covering our story, so we can leverage the reach of their audience to our advantage. As well as using social media to spread our message even if many patients can only dream about participating in life outside the confines of their home/bed. We already have seen how this type of a demonstration can bring much needed awareness of this illness to mainstream media outlets as demonstrated by patient advocate Rivka Solomon in the 2011 demonstrations she planned.
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