I'm posting this at the request of Rivka. Please, anyone in San Francisco who is able to join in, contact Bobbi (contact information at bottom of post).
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... San Fran public demo for ME/CFS/XMRV, next week ....
ME/CFS/XMRV Patients, Families and Friends -- Invisible No More
Sick and tired of:
- your government ignoring you and this illness?
- being belittled by the media for a very real illness you have suffered with for years?
- being invisible?
Be Invisible No More! Join us in telling the government & media that we need more research money dedicated to understanding and treating ME/CFS and XMRV. Join us in a public demonstration to be held outside S.F.'s Health and Human Services building. We'll tell HHS Secretary Kathleen Sebelius to finally help the 1 million sick and disabled Americans with ME/CFS and XMRV.
DETAILS
WHAT: A demonstration holding a 25 foot banner in front of the San Francisco regional office of the U.S. Department of Health and Human Services. (HHS oversees NIH, CDC, FDA.) This demo will be similar to one held recently on Capitol Hill, Washington D.C., in front of HHS's national headquarters. See video here:http://www.youtube.com/watch?v=_elj8mcd9Ak
WHY: Our goal is to tell the HHS that we are expecting more for ME/CFS and XMRV: More respect, more attention, more research money, more clinical trials.
WHO: People with ME/CFS and XMRV, their family and friends.
WHEN: The week of May 23, any day we can find 5 people available. Preference for Wednesay, May 24, or Thurs, May 25, 1:30-2:30 pm. Tell us, when might you be available? Do you need help with transportation?
WHERE: In front of the HHS building at 90 Seventh Street (Federal Building).
THE ACTION: The large banner reads, "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" Those who wish can say three sentences about your health, years sick, and your needs, and/or read a bit from a previously drafted statement. An edited video of the event will be made public (YouTube) and presented to HHS. Media will be invited. One of us will deliver a letter to HHS officials. We will seek a permit from the S.F. Police before hand, if needed.
CONTACT:Bobbi
Daughter sick 21 years ME/CFS/XMRV
Bausubel (at) yahoo (dot) com
(I am the woman on the right of this video: http://www.youtube.com/watch?v=8t1Xqp1LDxM )
How about contrasting how little government spends on (cares for) us compared to other uses.
ReplyDeleteIE "The 9/11 commission decided a human life is worth $tk million. But out government says that our lives are only worth $3 per year."
Or. The big secret govenment doesn't want you to know: ME/CFS destroys lives, causes cancer, takes away childrens' parents. AIDS gets $tk million for tkooo,ooo patients. Cancer gets $tk million for tk,000. And ME/CFS gets $5million for 1,000,000. Are they trying to tell us our lives are worth nothing?
Sorry I'm 3000 miles away.
These are all good ideas, Anonymous!
ReplyDeletePerhaps you could hold your own mini-demonstration and put those statements on a banner or poster boards. Rivka has provided step-by-step directions which you can find under my "Protest!" blog post -- just click on it at the right of this page.
I'm 3000 miles away and too sick to demonstrate at the moment myself.