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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. _Kim_

    _Kim_ Guest

    Kati, go pee and get something to eat - they're on lunch break until 2:05.
     
  2. Koan

    Koan Be the change.

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    Oh yeah! That's how I watched it last time - a podcast! Thanks WD.

    The problem with not remembering things is that you can't remember what you don't remember.
     
  3. Jerry S

    Jerry S Senior Member

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    For my comments see Koan's.
     
  4. Kati

    Kati Patient in training

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    LOL- thanks Kim-

    Of note, I see they are doing a lot of listening- I really hope they make real recommendations today and tomorrow- and that actions are acted on right away- there has been too much waiting for all of us.
     
  5. rebecca1995

    rebecca1995 Apple, anyone?

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    Reeves

    Once again, the CDC couldn't afford the plane ticket from Atlanta. ;)
     
  6. jackie

    jackie Senior Member

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    Been listening since 6:15 california time.

    Also having probs with it cutting out - don't have enough broadband i guess on my laptop.

    But have taken about 6 pgs. badly written notes.

    When rep from cdc (NOT Reeves) was asked about Reeves media response to xmrv news last week said "responding to his response I can't respond (he REALLY said that!)...and that Reeves is not involved with XMRV - XMRV has been moved (from CFS lab) to the Retrovirus Lab - and questions should be directed to that lab in future.

    Peterson commenting on Reeves critisism of the study ie "the population not being well characterized"...said "publishing of XMRV in SCIENCE should speak for itself"

    One Dr. said one of his (cfs) patients was about to donate blood (as her civic duty) - he said emphatecally no - stronger than just a "caution". So, NO blood donations.

    Also heard that cdc will be using Georgia and Wichita cohorts to duplicate study - much dissention about this from speakers.

    Heard words like "eerily frightening" used but can't remember the context.


    Heard Annette Whittemores 5 min speech (which Wanda Jones wasn't going to allow -as it didn't follow rules (had to be on waiting list to speak even tho others offered her their speaking time!).

    Pretty exciting! James Oleske took command from wanda Jones - took responsibility for any out of order and GAVE Whittemore the 5 min. on the spot.!

    She said (to paraphase)"all of you (with cfs) have the attention of the world today.....xmrv is the piece of the puzzle that can't be ignored.

    Today ends the debate....cfs WAS NOT and NEVER WAS a psychiatric illness!"

    And something about this possibly needing a call for a Congressional Hearing to discuss the past "roadblocks" that have existed. And something about the attempt to keep people from getting treatment.

    Re: testing she said everyone has the right to know in order to stop the progression of this disease and get treatment.

    Whittemore asked for everyone to write Congressmen, senators, pres., vp and dedicated her talk to alison hunter (suicide) and to jerry crum.

    Also lots of info re: legal implications of transmission from transfusions. Two very large lawsuits underway re this - post-transfusion XMRV.

    Also, Dr. Coffin gave seat of his pants talk (just invited 24 hrs. ago) very scientific - very interesting (he has worked nearly 40 yrs. with retroviruses exclusively)...but far too complicated for me to write and listen!

    Important!!!!! He said "he was HORRIFIED when he discovered yesterday a lab offering xmrv tests (N.C.?)..and said if anyone is listening right now , strongly urged them not to use do this - called it a very bad idea.

    He also called wpi paper as good as it gets.

    These were my "notes" until the first break. sorry so disjointed had a choice between listening and listening and writing! I have 3-4 pages discussing the connection to xmrv/cfs/ebv/cmv etc. (you know lab stuff) - but I don't know if I'll ever be able to sort it out!

    will try again and be back later. also, I urge everyone interested to watch for either transcripts or on demand post meeting viewing in a few days from NIH site. SO MUCH INFO BEING DISCUSSED!!! Hope others here did better job of listening/reporting! But I'm so glad I could hear some of this stuff for myself - firsthand!

    jackie:eek:
     
  7. anne

    anne Guest

    Can someone tell me--what does the CFSAC actually do?
     
  8. _Kim_

    _Kim_ Guest

    Thanks Jackie

    Jackie, thanks for posting your notes. I missed the first 3+ hours (had to work) and you've done a great job of filling in with some of the highlights.

    FYI - my connection keeps stalling too, but when it does, I click [stop] on realplayer and [play] right away and it reconnects pretty quickly.
     
  9. Dolphin

    Dolphin Senior Member

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    Chronic Fatigue Syndrome Advisory Committee.
     
  10. KC22

    KC22 Senior Member

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    Thanks, Jackie..

    I missed the beginning of the meeting. Your notes are very much appreciated.

    This is exciting to watch....
     
  11. Dolphin

    Dolphin Senior Member

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    I saw that bit - I reckoned having all the people there as well as possibly getting lots of submissions and knowing a lot of people were watching helped sway that. If it had just been 2 man and a dog (as they say) in the room, it might not have happened.

    I haven't got to watch much but will flick back later to see about the petition being presented.
     
  12. Dolphin

    Dolphin Senior Member

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  13. Min

    Min Senior Member

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    Good to hear the UK's Professor of Psychiatry Peter White criticised - he has taken most of the UK taxayer's research funding into ME/CFS whilst calling it an 'abnormal illness belief'.
     
  14. mezombie

    mezombie Senior Member

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    CFSAC -- What it can (& can't) do

    For Anne (and anyone else interested):

    The CFSAC (aka Chronic Fatigue Syndrome Adisory Committee) can make recommendations to the Secretary of Health & Human Services (currently Katherine Sebelius).

    Unfortunately, recommendations made in the past have never been acted on.

    You can browse the CFSAC website here (check the charter for its actual powers): http://www.hhs.gov/advcomcfs/index.html

    While this may sound bleak, the semi-annual meetings that are held allow testimony and discussions to be put in a public record.

    I would like to see a Congressional hearing on XMRV and the nation's response (CDC & NIH) in the near future. The record set at this meeting could help turn that into a reality.
     
  15. richvank

    richvank Senior Member

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    To Anne re: CFSAC

    Hi, Anne.

    Officially, the CFSAC advises the U.S. Secretary for Health and Human Services about all things related to the federal government's activities associated with CFS. They have no power to execute their recommendations, they can only give advice. Historically, their official recommendations have not been followed.
    Hopefully, that will change this time, with the impetus of the XMRV discovery.

    Unofficially, they serve as a forum twice a year to which the CDC, NIH, FDA and SSA send representatives, and they serve as a place where these agencies can be taken to task publicly by members of the public for what they do and fail to do. The meetings didn't used to get much publicity, but now, since the previous one, they are being webcast, thanks to Wanda Jones. Agencies don't like bad publicity, so this "moral suasion" may also have some effect.

    Best regards,

    Rich
     
  16. Koan

    Koan Be the change.

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    Jackie,

    You can listen and relax. There is a podcast! Oh, too late, they're back.
     
  17. anne

    anne Guest

    Okay, thank you.
     
  18. SeaShel

    SeaShel Senior Member

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    Really!?!? Can one of these panel members grow a pair, take the bull by the horns and DO/RECOMMEND something!!

    Crikey!!
     
  19. oerganix

    oerganix Senior Member

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    The EBS-promoting guy says they have recommended "centers of excellence" for research and that they should get 1.5 million each year, each center - and they have made this same recommendation for the last 4 years, since 2004. But they have not even had a response that these recommendations have been "heard", let alone responded to. So, the recommendations have been made, but WE will have to put on the pressure so that something will be ACTED UPON, NOW!
     
  20. _Kim_

    _Kim_ Guest

    James Oleske couldn't say Myalgic Encephalomyelitis - stopped, collected his thoughts and called it "EM" -WTF??
     

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