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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. Mark

    Mark Acting CEO

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    Yes Gabby - you were very muffled for the first minute or so (their fault) but then they sorted out the sound a bit and I could hear you fine. I heard your excellent and clearly-expressed points about the priority recommendations. It was good that there was a consistent message from the patients speaking, with lots of people independently calling for the same recommendations to be prioritized.

    I agree with Sing: the contrast between the agency speakers and the patient testimony seemed very stark. Maybe it's just my imagination, but I sensed a new mood of frustration and disillusionment in the testimony, as if the patient advocates have almost given up on CFSAC; many sounded weary of trying to get the same messages across yet again with little hope of being heard. Several mentioned the contrast between the FDA stakeholder meeting, where they felt listened to, and CFSAC where they did not. How things progress with the priority recommendations this afternoon might be a key turning point for CFSAC. If CFSAC proceeds to ignore patient input (which I understand is supposed to be its main purpose) and approves those priority recommendations in spite of what patients have just said, then I really do wonder about what might happen next...
     
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  2. akrasia

    akrasia Senior Member

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    Mark, I noted the contrast as well, the feeling that no matter how articulate or eloquent patients are, there's a basic disconnect. The patients are full of passion, a sense of urgency, and the bureaucrats move in a kind of slow motion.

    While I've spoken of my sense of the change that's occurring in at least the CDC and FDA, pace Wanda Jones, the pressure is coming from the private sector. It's a scandal that members of the FDA can claim that they were unaware of the severity of the symptoms. The sad thing is that I don't think they were being disingenuous.

    For virtually all of my 26 years with the disease, I sensed indifference if not outright condescension and hostility to people with m.e., now it's more a sense of inertia, face saving. Their long range policy, if any, is "ass covering".

    Gabi, although the very early part of your testimony was muffled, it was very well done. Thanks to everyone who has testified and will in the course of the next couple of days.
     
  3. Nielk

    Nielk

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    I too have a feeling as if this committee is so jaded from hearing our testimonies year after year. I had a feeling as if they were doodling mindlessly on their paper while we were sweating and pleading our case (so far). I hope that I am wrong. Yet, I am not sure what else we could do?
     
  4. jspotila

    jspotila Senior Member

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    Great job Gabby, and the others who testified. I am very very worried about how the priority recommendations discussion will go this afternoon. Here are my comments if anyone wants to read them: http://wp.me/p2xYoQ-h1
     
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  5. Sasha

    Sasha Fine, thank you

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    Well worth reading - thanks for submitting that to them, Jennie.
     
  6. Sasha

    Sasha Fine, thank you

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    My connection dropped out and I'm sorry that I missed your testimony - I hope to catch up with it if they post a video. Thanks for testifying on all our behalves!
     
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  7. Sing

    Sing Senior Member

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    Thank you, Jennie, for providing a link to your excellent commentary. Here is what struck me most:

    "The second issue I must bring to your attention is the High Priority Recommendations List that you will be asked to approve this afternoon. Less than 30 minutes has been allocated for this discussion, and my information is that you will be voting on the original list as drafted in January 2012. I am sorry to say that this is patently ridiculous. If you allow this, you will be approving a list that is 18 months old, that includes none of your recommendations from 2012, and that includes two recommendations that have already been completed. Furthermore, the wording of several recommendations have been altered from the original versions, and you will be making this decision without hearing any of the public comment scheduled for tomorrow.

    If you go along with this, you are telling the patient community that designating high priority recommendations is a formality not worthy of meaningful discussion or even the slightest effort to produce a current, up to date list. I ask you, Committee members, to move this discussion to Thursday afternoon so that you can devote the attention and consideration that this document deserves. If you do not, then I ask you to vote NO and not approve the list in its January 2012 form. We deserve more than formalities. Thank you."
     
  8. Nielk

    Nielk

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    I would post the link to mine here but, I don't know how to post a word document here.
     
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  9. Sasha

    Sasha Fine, thank you

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    Well, I missed everything this morning apart from the introductions, pretty much, due to my internet problems and now I seem to be live streaming the lunch break.

    Was there any good news?
     
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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  11. Sasha

    Sasha Fine, thank you

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  12. Nielk

    Nielk

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    Am I the only one who is surprised that this is what they chose as the guest speaker for the CFSAC meeting? With all due respect to Dr. Jaques who is doing his best to explain the process of medicare coverage, in what way is this benefiting the work of this committee?
     
  13. Nielk

    Nielk

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    This has nothing to do with CFS. Even for the patients who do receive disability from Medicare, this information of the inner works of how Medicare comes to their decisions, has no effect on us.
     
  14. Nielk

    Nielk

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    We each had to condense our testimonies into 5 mins slots and this guy has 1 hour! I'm sorry for all this complaining but, this is so frustrating!
     
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  15. Nielk

    Nielk

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    Had Dr. Jaques been knowledgeable about ME/CFS specifics, I would have seen some benefit. The committe could not even ask him about any specifics. Did they prepare for this meeting?
     
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  16. Sing

    Sing Senior Member

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    My feeling is that Dr. Jacques was clear, helpful and frank in his presentation on Medicare. I found him to be an example of a bureaucrat whom our physicians and advocates can get straight answers from, and pointers for how to proceed, in order to help us. Medicare is a huge payer and also, directly and indirectly, often a policy setter for other payers. --And since the money and the rules around the money do structure the field, we need to be clearer on what this structure is and how to influence it. I thought that Dr. Jacques was communicating as a team player, with the skills of a leader to see the overview. In those ways, he has helped this meeting move forward.
     
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  17. snowathlete

    snowathlete

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    Great points jennie, well done and thank you.
    I expect all of you did great jobs representing us - I wasn't able to watch unfortunately.
     
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  18. snowathlete

    snowathlete

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    Is it short enough to copy and post straight into the thread as text ?
     
  19. Nielk

    Nielk

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    Written Testimony
    Gabby Klein

     
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  20. Sasha

    Sasha Fine, thank you

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    Really superb testimony, Gabby! Thank you.
     
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