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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. Nielk

    Nielk

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    Thank you jspotila for testifying. I know it's not easy to do..especially when so sick. I appreciate it.
     
    justinreilly, jspotila and Sasha like this.
  2. Sasha

    Sasha Fine, thank you

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    Very interesting - thanks for doing all that work. The lack of knowledge of CFSAC members at the last meeting was a big shock to me - your detailed blog post helps explain why. Too much of that meeting was spent with them trying to catch up to a point where useful discussion could begin.

    Are you going to bring this up at the meeting?
     
  3. lnester7

    lnester7 Seven

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    Can we ask more of the big names to sit in? Maybe we as a group/ or the advocate group can send letters to the dedicated institutions like Simarron, WPI, PANU, Standford..... To see if they can nominate representatives!!!!
     
  4. alex3619

    alex3619 Senior Member

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    On funding, if we took a massive cut to what would be fair and balanced funding for us, it would still be a 15 fold increase on current funding.
     
    Sasha likes this.
  5. Andrew

    Andrew Senior Member

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    Who votes on which nominees get in?
     
  6. jspotila

    jspotila Senior Member

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    No, my testimony will be focused on the lack of measurable progress and the resulting frustration and despair we feel.
     
    SOC and Sasha like this.
  7. jspotila

    jspotila Senior Member

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    Anyone can submit a nomination. The Committee publishes calls for nominations every couple years, and anyone can submit. Both the CFIDS Association and PANDORA have submitted multiple names in the last few rounds, including nominees from Simarron and WPI.
     
    lnester7 likes this.
  8. jspotila

    jspotila Senior Member

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    The Secretary for Health and Human Services approves the nominations. I suspect the process involves the DFO (Nancy Lee) reviewing all nominations submitted and probably making recommendations to Assistant Secretary Koh which then get approved by Secretary Sebelius.
     
  9. SOC

    SOC Senior Member

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    Thanks, Jenny, for your hard work digging these things out and bringing them to our attention -- especially since you are not feeling well.
     
    jspotila likes this.
  10. Andrew

    Andrew Senior Member

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    I submitted a copy of my testimony on time, and got a "thank you" response. I wonder when they are going to tell us which time slot we are in.
     
    Nielk likes this.
  11. Nielk

    Nielk

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  12. Andrew

    Andrew Senior Member

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    I just sent the following:

     
  13. ixchelkali

    ixchelkali Senior Member

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    Does anyone know if they're having live streaming video this time? I didn't see anything about it on their website. I sent an e-mail asking, but haven't heard back yet.
     
  14. Hope123

    Hope123 Senior Member

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    CFSAC will be streamed online again this time, thanks to everyone who wrote, called, e-mailed the government about the need for this.

    Here is the link to watch. There is nothing if you press play right now since the meeting will not be until Oct 3-4. I am also going to do a new post to attract more attention.

    http://www.hhs.gov/live/
     
  15. ixchelkali

    ixchelkali Senior Member

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    Thanks, that's what I was looking for.
     
  16. Andrew

    Andrew Senior Member

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    I was just looking at the agenda. Can we assume those times are Eastern Daylight Time???
     
  17. jspotila

    jspotila Senior Member

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    Yep, Eastern time.
     
  18. Valentijn

    Valentijn Activity Level: 3

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    I'm pretty impressed with Dimitrakoff. Seems like he has a good scientific approach to creating cohorts, which is rather necessary if the CDC continues using their CFS definition. Also good focus on pointing out that they don't know what's going on, that they need to be able to admit that, and then starting from there they can try to figure things out.
     
    WillowJ likes this.
  19. Hope123

    Hope123 Senior Member

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    Dr. Maier is being a wall -- every year researchers ask for money and get nothing. In times when NIH was doing well, CFS recevied little funding; now they're using the budget again as an excuse.
     
  20. Valentijn

    Valentijn Activity Level: 3

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    I missed the intro ... who's the woman named "Susan" who keeps giving the bureaucratic answers? I don't see Howard Koh either.

    And I was a little annoyed with the suggestion that ME patients/advocates/doctors get involved with the chronic pain committee or whatever. It's not about pain!

    On the other hand, it was nice to see most people call it ME/CFS, though one serious researcher (Mary Ann Fletcher) kept saying "chronic fatigue" :p I also think some people (committee members?) at the end did a good job pressing the bureaucrat about funding.
     
    Kati likes this.

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