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Dr. Kathleen Sibelius on NPR tomorrow.....................

5150

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questions for Sebelius

Even though there were no questions taken re XMRV, I think there was a fairly large number of emails submitted that hopefully got her attention. If only people begin to see that we are coming out of the woodwork, eventually we'll have an impact. Until then, we endure. Some will needlessly die, and many grow sicker day by day.Another time, another place, we do it again. Sebelius is a target to bombard with our concerns, viewpoints, and questions. As sec of human health and services, her Dept oversees CDC. So keep the pressure on her.
 

Hope123

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Thanks for writing or trying to call in, everyone! As people have mentioned, even if we didn't get our questions addressed, perhaps someone at NPR will pick up on this.

Also, for the people e-mailing live radio shows in the future, best to limit the number of links as the screeners don't read fast enough.
 

urbantravels

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They should absolutely do a Science Friday on this - once there is some new information to chew on. Either once the Alter paper is released, or in conjunction with the International XMRV conference, or some other upcoming milestone.
 

Hope123

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Gemini, that's great!

No, I didn't get an e-mail back but if you want to put here what you intend to write back, people can help you craft your letter and suggest appropriate folks they can talk to (some of us have direct links to researchers) and links to refer to.

NPR is somewhat acquainted with XMRV because one of their well-known talk show hosts/ correspondents, Scott Simon, is a friend of Lauren Hillenbrand, who wrote Sea Biscuit and has had severe CFS for more than 2 decades. Mr. Simon testified at a Senate hearing about CFS for Ms. Hillenbrand. NPR also reported on XMRV last year when the Science paper came out:

http://www.npr.org/templates/story/story.php?storyId=113613955
 

Navid

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Received an e-mail from NPR today suggesting I submit the XMRV topic for a future show.

Anyone else get this e-mail?

Gemini

gemini:

i hope you can follow up on this with the help and brainpower of others from the board. this is great oppty to have xmrv/and the disease currently called CFID's/ME talked abt on NPR. the scott simon/laura hillebrand connection is a good one too....the best would be if the if alter paper were published soon to have him, plus judy m, goff, coffin and a cfid's clinician all talk to the matter....maybe an eloquent/medically well-versed xmrv+ patient too.

the thought of all this is very exciting. parvo fighter is a very good writer. maybe you should also contact mindy kitei of cfs central blog....she's a great writer and well versed on the disease and the media.

first thing would be to start a new thread and gather the brainpower : )....cbs, Rrrrr, urbantravels, judderwocky, hope123....the list goes on and on....amazing how many smart well-informed ppl hang around here : )

thanks gemini for making my day a little brighter : )
 

Gemini

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if you want to put here what you intend to write back, people can help you craft your letter and suggest appropriate folks they can talk to (some of us have direct links to researchers) and links to refer to
Hope123, urbantravels, shebacat,

Thanks everyone. Waiting for the Alter paper is a good idea. Would like to submit before September's XMRV conference, though. I'll post a draft here for your help & review before sending it to NPR.

xrayspex, thank you for your kind words earlier.

Gemini