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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
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CCFS Advisory Committee Meeting - Will be Webcast Live

Discussion in 'General ME/CFS News' started by Summer, Oct 20, 2009.

  1. shrewsbury

    shrewsbury member

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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...?
  2. Koan

    Koan Be the change.

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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.
  3. shrewsbury

    shrewsbury member

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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
  4. Jessrose21

    Jessrose21

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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.
  5. Jessrose21

    Jessrose21

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    Farmington, NY
    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.
  6. shrewsbury

    shrewsbury member

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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
  7. shrewsbury

    shrewsbury member

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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.
  8. Advocate

    Advocate Senior Member

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    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.
  9. shrewsbury

    shrewsbury member

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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
  10. Koan

    Koan Be the change.

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    Finn ~ who's going to pick you up off the floor when you collapse!

    Careful!
  11. _Kim_

    _Kim_ Guest

    Yesterday, they had 888 viewers. Fantastic!
  12. shrewsbury

    shrewsbury member

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    880 webcast viewers yesterday

    Wanda's final comment before lunch:):)
    880 webcast viewers yesterday
  13. Advocate

    Advocate Senior Member

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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.
  14. Advocate

    Advocate Senior Member

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    Thanks Finn. Yours is probably the correct number.
  15. shrewsbury

    shrewsbury member

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    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!:):):)
  16. Jessrose21

    Jessrose21

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    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?
  17. Aftermath

    Aftermath Guest

    Wanda Jones

    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.
  18. Jerry S

    Jerry S Senior Member

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    I'm toast again today. Carry on, you guys! I'm enjoying reading your posts.

    Jerry
  19. oerganix

    oerganix Senior Member

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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.

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