link to all CFSAC testimony

sarahg

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All the testimony the CFSAC received in writing is up on their website now.

http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html


Some of the written testimony is quite moving, some quite interesting. Mary Schweitzer's is really worth a read, many of them are. If you spoke but haven't given them a written copy, you should do so so it can be placed on their website. I'd elaborate more but my brain is pretty gone today.
 

zoe.a.m.

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Thanks for posting this sarahg

I had already written to CFSAC to ask where the testimony was, as I couldn't locate it. I practically have to tie my hands not to email the link to everyone I've ever known!

I'm very sorry your testimony isn't there Susan; Hopefully that will be fixed quickly!
 

zoe.a.m.

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I see a lot of missing testimony

Perhaps they are putting it up gradually--I have no idea what kind of staff manpower they have. Does anyone know if everyone who wrote in for the meeting will have their testimony posted? I hope there will be as many as possible, even those who couldn't attend.

It is nice to read the pieces I saw spoken as the excitement I had watching the meeting sometimes made it difficult to take it all in. It's nice to be able to read them over so I definitely hope your contributions will be there shortly.
 
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thank you susan

Hi Sarahg,

I just looked at your link and my name is not listed for oral testimony on Friday. I went a long way to speak so I just sent a copy to Dr. Jones. I am very tired and in a lot of pain and I wanted to thank you for making it easy for me to find.

Susan
susan thank you for making the effort to go to the meeting. it is appreciated!!!

I hope you're out of pain soon

if:)
 

zoe.a.m.

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No one should miss this one--this is where she talked about "Reeves Disease"!
I can't think of a better name for it, honestly. In no joking manner, it should read in the literature, encyclopedias, and med-school texts that this was Bill Reeves' contribution to the field.
 
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Hi,

Thanks zoe.a.m. and islandfin. I am feeling a little better today. About an hour after I emailed Wanda she wrote me back to tell me they had my testimony and she thanked me for checking up on them! She is very nice and very competent. I think we were a convincing group and I think we won just about everyone to our side. I even thought Mike (CDC) was beginning to soften the second day. I felt somewhat out of place but the Whittemores were very nice to me and I was happy to be able to thank them on all of our behalf. Some of my odd symptoms are similar to their daughters. I told nearly everyone I spoke to (doctors and patients) about Cort's site and our group. I was sitting next to a young mother in an orange shirt (Hi Heidi!) that is in all the youtube videos but the camera just misses me. I made some new friends (Hi Ruth and Joan!) and if my recovery stays on course, next CFSAC meeting I will be back. When I saw my husband at the airport on Friday night I cried. I was doing the Fibro shuffle (still am) and the whole trip home every other person either had terrible body odor or was wearing overwhelming perfume! The jet fumes as we sat on the runway were choking me. I have not had sensory overload like that for a very long time so I think I pushed myself pretty hard.
I am looking forward to watching the meeting when they post it. Many of the speakers had to rush so much at the end to finish in 5 minutes I could not understand them. I had cut out large chunks of my speech the night before when I timed it and it became a bit confusing. I think I will end up reading the testimony and watching the videos. I am confined to bed for a few days so it will keep me busy.
I was happy to tell my story. I would like to figure out some way that those of us who are able could tell the stories of the sickest among us.

srmny
 

kolowesi

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smrny trip to CFSAC

To Susan and all who went or otherwise contributed, thank you so much!

I am hoping and wishing and praying that all will heal from the effort quickly.

You made a tremendous impression. A lot of us got to watch. We won't forget, we will keep emailing and calling various government officials.

Again, thank you. It was a huge sacrifice and may you feel you accomplished something big.

Kelly
 

Andrew

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Hi. I'm having a lot of trouble finding certain parts of the CFSAC meeting in movie form. I have the entire first day in two mpeg files, but I can't find Peterson's testimony or any of the Q&A or discussion of XMRV. Part of the problem might be my fault, because I can only sit at the computer and concentrate in short bursts.

I've tried looking at the files posted on youtube, but the XMRV stuff seems to be broken up in ways that eliminates parts of Peterson's speech. Also, it looks like most of the "debate" part is missing.

My understanding is this is in day one, and if someone can tell me how far through the day this happened, maybe I can find it. Or guide me in some other way.

BTW, I can't find my way back to where I downloaded the podcasts, so I can't help others find it. It was some place on that site where the webcast info was. And I don't remember seeing the second day, if there was one.
 
K

_Kim_

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Hi. I'm having a lot of trouble finding certain parts of the CFSAC meeting in movie form. I have the entire first day in two mpeg files, but I can't find Peterson's testimony or any of the Q&A or discussion of XMRV. Part of the problem might be my fault, because I can only sit at the computer and concentrate in short bursts.

I've tried looking at the files posted on youtube, but the XMRV stuff seems to be broken up in ways that eliminates parts of Peterson's speech. Also, it looks like most of the "debate" part is missing.

My understanding is this is in day one, and if someone can tell me how far through the day this happened, maybe I can find it. Or guide me in some other way.

BTW, I can't find my way back to where I downloaded the podcasts, so I can't help others find it. It was some place on that site where the webcast info was. And I don't remember seeing the second day, if there was one.
Hi Andrew,

Very soon, the webcast will be available (maybe even today). When I checked their site on Friday, webcasts from two days earlier were already posted.

But, in the meantime, if you go to Youtube and search for "CFSAC" and then narrow your search down to "this week"s uploads, you will find the videos. Not everything from the meeting was uploaded to Youtube.

Hope this helps,
Kim