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Watch Oct 3-4 to show the US gov't you care about ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 1, 2012.

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  1. SpecialK82

    SpecialK82 Senior Member

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    It's back up now :)
  2. Dolphin

    Dolphin Senior Member

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    Fair points.
  3. SpecialK82

    SpecialK82 Senior Member

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    Go Mary!!
    alex3619 and Nielk like this.
  4. SpecialK82

    SpecialK82 Senior Member

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    Dr. Joan Grobstein - Nice dressing down of committee
  5. alex3619

    alex3619 Senior Member

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    Susan Meier - wow, I never knew the NIH was so fantastic! Look at what they do for everyone else. Lots of info on who they are. We need to know what they are doing. We need to know how things can improve. Some of what was reported on was peripheral research - like fatigue and sleep, pain, but they did fund XMRV research (Lipkin et. al.). The intro is mostly spin.

    One important thing is they made funding to the study showing increased association of lymphoma with CFS. They also have a bunch of plans that are still unfolding or intended.

    Ongoing research is broad. Last year $6.3M, this year 18% of applications were funded. Overall targeted and non-targeted funding is at 28% and 30%. The total amount is still dismal though.

    On discussing how to improve funding, by using an autism analogy, she commented on how it improved was increasing researchers and results, step by step, and action by advocates.

    Dr Fletcher (?) commented that funding applications and processes don't really suit multi-institute research.

    An issue that is identified, again, is that there are not enough ME or CFS research applications coming in.
    justinreilly likes this.
  6. alex3619

    alex3619 Senior Member

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    The FDA spokesperson noted that they will be presenting information on how to create more effective advocacy.
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  7. alex3619

    alex3619 Senior Member

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  8. Hope123

    Hope123 Senior Member

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    Yeah, it was mostly "spin."

    Dr. Bateman isn't at the meeting. If it's the dark-haired physician, it's Susan Levine. If it's the older white-haired immunologist, that's Dr. Fletcher.
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  9. Valentijn

    Valentijn Activity Level: 3

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    Is Sandra Kweder from the FDA going to say something relevant to ME soon, or is this just a random history lesson?

    I get the feeling it's going to lead into "it's our duty not to give you drugs".
    justinreilly likes this.
  10. Nielk

    Nielk

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    I like her but, I'm not sure what she is saying? Are we to buy shares of the FDA?
    I'm guessing it's an introduction.
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  11. alex3619

    alex3619 Senior Member

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    I was fairly sure I got the name wrong, thanks. It was Dr. Fletcher ... brain fog moment. Bye, Alex
  12. BEG

    BEG Senior Member

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    I put the history lesson on mute. Maybe she wants to talk away her time so there is no time left for comment. She is certainly verbose.
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  13. alex3619

    alex3619 Senior Member

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    FDA, Admiral Sandra Kweder: Controversy on definitions implies heterogeneity.

    We need homegenous cohorts, defined measures of outcomes, and good biomarkers. Biomarkers must correlate with function, they don't have to be diagnostic. The more heterogenous the cohort, the larger a clinical a trial is required.

    PS My comment: If this can be done, say goodbye psychobabble.
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  14. BEG

    BEG Senior Member

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    Purple Dot Disease or Green Stripes, anyone?
  15. Hope123

    Hope123 Senior Member

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    The other option to large clinical trials are smaller clinical trials that ONLY look at a specific subset -- e.g. people who fit both Canadian and Fukuda, say, or only people with viral onset, etc.
    SOC and alex3619 like this.
  16. alex3619

    alex3619 Senior Member

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    What if you have purple dots on your green stripes? :eek:
    CJB and BEG like this.
  17. BEG

    BEG Senior Member

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    Well, I guess you've mixed your cohorts.:eek:
    SOC and CJB like this.
  18. Kina

    Kina Moderation Team Lead

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