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CCFS Advisory Committee Meeting - Will be Webcast Live

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bureaucratic timelines sound slow - 2011 for "state of the science" Klimas great at trying to push

11:00 Dr Jerry Honeburg - Blood Supply, under Secretary of Public Health and Science - his boss responsible for blood safety

Just back from conference on blood in Atlanta - xmrv was part of discussion

Last night interagency report for today
- recognize xmrv
-taking steps to investigate
-expect report within weeks

ie no recommendation to not give blood yet

(Wanda and Jerry work for same boss)
will post the results internationally

Rebecca raising - not give blood, not organ donor on licence...?
 

MEKoan

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If it becomes a concern that XMRV be kept out of the blood/organ supply, and screening methods to do same are produced, tesing for us will be widely, easily and cheaply available. We will not have to convince anyone to test us. It remains to be seen how quickly this can be arranged but, if the public becomes concerned about the blood supply, it will happen far more speedily than it would through any other efforts.
 
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11:15 Committee Discussion

CDCs 5 yr plan
-Michael xxxx from CDC - this committee makes recommendations to the Secretary and CDC responsible to Congress so doesn't seem appropriate to discuss here (although personally for all the good things)
-5 yr plan is big picture, not asked to prioritize
-CDC not have budget allocations yet, not even for 2010
-Wanda noted there's no legislation before Congress to affect CDC
 
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I like Wanda Jones! She's a smart cookie. She reminds of a school principal or something, very no-nonsense, but also with a sense of humor. I didn't care for her the first day, with the whole Annette incident, but after the break that day, she came back a new person.
 
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If it becomes a concern that XMRV be kept out of the blood/organ supply, and screening methods to do same are produced, tesing for us will be widely, easily and cheaply available. We will not have to convince anyone to test us. It remains to be seen how quickly this can be arranged but, if the public becomes concerned about the blood supply, it will happen far more speedily than it would through any other efforts.
Oh I hope so! I pray so. THis week my goal is to write a letter to congressmen and women regarding XMRV funding and research, and have all my friends and family to forward it. I thought about starting a thread to get everyone's input as to what to write.
 
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8:45 am PST 11 or 12:45 EST CDC cont

- CDC had planned some Dec 09 meeting
-not going to do - behind - will try
-"no h1n1then" he and Reeves have been assigned to h1n1 for last month
-Klimas - she had asked for h1n1 cfs follow-up, doing?
-he doesn't know staus or if possible, will find out

More and more impressed with Wanda Jones. Sounds like she's talking to everyone relevant in civil service and elected positions and keeping me/cfs xmrv current

Return to recommendations
-something re education for social services so not take kids from parents when kids too sick to go to school

5 minute break
Cheryl Kitt from NIH next
 
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Cheryl Kitt NIH
Wanda describes as "long-time freind of this committee"

-describe peer-review process
-stats 2008 got 77,000 commns, 16000 reviewers, 1400 review meetings, caa recommended reviewers
-2009 "business as unusual" 115,000 commns, 38,000 reviewers, 1600 meetings

how to speed funding and improve system?
-up to last Nov - not fund many 1st time applications, changed process
-new applicant definition changed and now separated from established so that more new applicants will get funded (so apply now while mandate applies - not R21s or small grants - do RO1s)
- changed review so that impact of research depends on predicted affect on field (others will use it, do it, take it). Score all papers with this + 5 other criteria now so papers not discussed will know why not + written explanation I think.
 

Advocate

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I'm liking Wanda better too. She just seemed unnecessarily rude to Annette Whittemore.
My thoughts exactly. I felt Wanda was rude to Annette Whittemore, and I wondered if Annette felt pressure to shorten her testimony. Later, when Cort spoke up for Wanda it made me take another look at her, and I think she's doing a good job.
 
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Cheryl Kitt NIH

lots of specific info on how to get grants and changes to processes - helpful insights for researchers

-3x/yr get over 16,000 applications
-JJ 09 got over 40,000 and funded many (I didn't hear her say how many)
-said some grant still available that CFS researchers should apply for

-established CFS special emphasis panel housed in neuroscience division
she thinks this is a good thing
-dilemma is that those who submit applications can't be on review panel

?s (and then lunch - yay - don't know if can hang on here much longer)

-Leonard Jason - IACFSME endorses viability of CFS panel + good that CFS research can be sent elsewhere if felt appropriate

Kitt
- attach cover letter saying where to send the application and type of expertise needed on review panel
- can't id reviewers
- reviewers change -can't guarantee availability of same reviewers

ending quote "these are great times" they're giving lots of funding, things are improving
 

Advocate

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Wanda Jones just said that yesterday there were 888 webcast viewers, and I could hear people applauding.

I hope today's numbers are as good or better.
 
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Finn ~ who's going to pick you up off the floor when you collapse!

Careful!
thanks. am aware (but just maybe not paying attention!! :eek:)
Sometimes I think it's worth the push. But may have to just listen this aft - we'll see.

How nice to be cared for!:):):)
 
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If you do get a letter together, would you mind sharing the draft? I'd like to write a letter, but I am brain-fogged and not so sure I'd be able to write a good one. If you'd share your letter, it would really help me to compose my own. I'll bet a lot of other people would feel the same way.

I'm liking Wanda better too. She just seemed unnecessarily rude to Annette Whittemore. Sure she needs to follow the rules, but she doesn't need to be nasty about it. I think you're right. I think, while she was at lunch, she adjusted her attitude.
Absolutely I will share the draft. That's actually why I wanted help with it because my own brain-fog! I want to post it on my Facebook page eventually so people can copy it and send it on. I guess I should start the thread in the advocacy forum?
 
A

Aftermath

Guest
Wanda Jones

My thoughts exactly. I felt Wanda was rude to Annette Whittemore, and I wondered if Annette felt pressure to shorten her testimony. Later, when Cort spoke up for Wanda it made me take another look at her, and I think she's doing a good job.
This is why we need to be careful before we start sending letters to call for someone to be sacked. Although I agree that she could have been more polite about things, I really hope that no one sent letters for her outster based on what happened yesterday.

We need to pick and choose our battles--and the one who needs the boot is Dr. Reeves.
 

oerganix

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Wanda Jones mentioned today that yesterday had 888 hits and she even smiled, so keep "hitting".

I was particulary encouraged by the doctor, urologist I think, who has CFS and flies off somewhere to get Ampligen twice, or was it 3 times?, a week. (Sorry, I was interrupted during her testimony.) She is still working full time, and attributes it to Ampligen. I'd love to find out if it would work for me, after 27 years of this illness. My concern is that parts of my body are so damaged that killing or controling the retrovirus will not restore me to health.