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CFSAC meeting Oct 3-4, 2012

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

  1. Andrew

    Andrew Senior Member

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    Follow this link: http://www.hhs.gov/advcomcfs/index.html. Look at the right side of the page near the top to see links for registering and testimony. Because this is a public page that changes over time, I hope they leave this on the front page until the meeting is over. I assume they will.
    WillowJ and CJB like this.
  2. Ember

    Ember Senior Member

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    After the June CFSAC meeting, Sasha posted, “I wonder if patients/supporters giving testimony could coordinate so that there's a unified message....” Those giving testimony in October might want to read “Jerrold Spinhirne's Public Comment for the October 2012 CFSAC Meeting.”
    Dolphin and CJB like this.
  3. Andrew

    Andrew Senior Member

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    I was hoping to speak this time, but I'm feeling so cynical that anything I try to write is unacceptable by my standards. Maybe next time.

    Best wishes for those of you to testify.
    currer and Nielk like this.
  4. Nielk

    Nielk

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    I understand how you feel Andrew. I spoke a year ago and just don't even know what to add to that. It took so much out of me.
  5. Ember

    Ember Senior Member

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    The FDA will be providing an overview of the drug approval process at this CFSAC meeting. According to Jennie Spotila's summary, two issues need to be addressed, populations and endpoint measurements:
    Staci Stevens testified three years ago, “That questionnaires have become the standard of diagnosis for CFS at the CDC shows how little progress they have made in the last 25 years in characterizing this disabling syndrome.” As a possible theme, patients could be demanding that FDA clinical trials use a test/retest protocol to measure PENE in ME-ICC patient cohorts.
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  6. Andrew

    Andrew Senior Member

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    I saw the FDA there a few years ago, and their rep said that the CDC's change to the "empirical" would wreck the continuity of all existing studies.

    Anyway, after more thought I might testify. But it won't be as comprehensive as last time. Maybe just one point.
  7. Ember

    Ember Senior Member

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    FDA Deputy Director Kweder has put ME/CFS in the same category as cancer and other "serious and live-threatening" conditions. So where are our Rituximab studies?

    Drs. Fluge and Mella are using CCC cohorts. The FDA itself points out that "forthcoming FDA guidelines on 'enrichment strategies,' where a subgroup of patients within a diagnostic classification may demonstrate enhanced benefits of a treatment, may be useful to advance treatment of ME/CFS.”
  8. jspotila

    jspotila Senior Member

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  9. Andrew

    Andrew Senior Member

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    I'd like to echo this. I also like the suggestions you wrote. I'm going to add a couple that I learned.

    1. Last time I used text to speech software to read my speech back ot me. It made it easier to spot problems. It also showed that It was okay to speak faster. I tend to be slow.

    2. While practicing I found that improvising just got me into trouble, and made the speech too long. Better to just read it.

    Note: Be aware that the submission requirements have changed. Please read them now so you don't miss a deadline.

    Also, realize that a lot of the CFSAC members are as frustrated with the system as we are. So speaking is a way to give them encouragement and ammo to carry on.

    And FWIW, I did sign up.
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  10. Ember

    Ember Senior Member

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    President Obama had never asked Nancy-Ann DeParle to investigate a specific disorder before. Will having her ear make any difference?
  11. Andrew

    Andrew Senior Member

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    I lost track of this. Is she the one Obama asked to look into this. If so, it would be great if she was informed. I imagine that all she will do is contact NIH and tell them of Obama's interest. They will send a list of what they are funding now, and tell them they don't have more money. And that will be that. I don't think they are going to tell her they cut CFS funding despite their budget doubling over the past decade.
  12. K2 for Hope

    K2 for Hope ALways Hoping

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    If they don't tell him, what if a patient tells him (Obama)????

    Just askin'...
  13. Ember

    Ember Senior Member

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    Here is the closing paragraph from President Obama's letter to Courtney Miller:
    People tend to behave differently when they know that questions may be asked.
  14. Sasha

    Sasha Fine, thank you

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    I'd completely forgotten I'd said that! But what a great idea... :p

    Jerrold's post is too long for me to read but I like his three numbered proposals right at the end.

    Personally I think that key points to push are:

    • adopt the ICC definition for research and diagnosis (as Jerrold also suggests)
    • acknowledge that NIH budget cuts and hard times are no reason to continue to underfund ME research - funding for ME should increase enormously to reflect its disease burden on the population and this will require that the large number of other diseases that NIH researches will receive slight funding cuts that will barely affect them in a fairer redistribution of funds
    • call it ME, not CFS (though if that's going to lead to acres of debate, let's forget that one and choose one with a good chance of agreement)
    Any more? Maybe someone could set up a poll on the suggestions.

    I do think it's important that 20 PWME don't get up at the meeting and ask for 20 different things. I think it would be great if there are a top two or three that almost everyone could agree on and that we could suggest that people mention in their testimony. I think it would be powerful advocacy. A lack of focus risks making us look like there are no serious issues for us to focus on, and we all know that's not the case.
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  15. Andrew

    Andrew Senior Member

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    I'm not seeing a lot of talk here about people going and people speaking. Any of you going? Any of you speaking in person or via phone?
  16. jspotila

    jspotila Senior Member

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    I signed up to testify by phone. Too sick to get there in person . . .
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  17. Sasha

    Sasha Fine, thank you

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    I'm sorry that you're too ill to go to the meeting but I'm delighted you're testifying - I know you'll do us proud. You should be running that meeting!
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  18. Snow Leopard

    Snow Leopard Senior Member

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    Though we might not all be impressed with Ampligen, the fact is that it helps some people and we need to push hard to build support it approved!

    Approval of this drug will set a great precedent.
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  19. Andrew

    Andrew Senior Member

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  20. jspotila

    jspotila Senior Member

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    In July, I filed a FOIA request to find out who nominated each of the current CFSAC members. I just posted the results on my blog, and I hope you will read the full post and comment there. Here is an excerpt from my post:

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