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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 1/2 day meeting today - Dec. 11

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Dec 11, 2013.

  1. Nielk

    Nielk

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    A- only federal people can be part of the contract??????????
  2. waiting

    waiting Senior Member

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    Dr. Lee said the CCC has been around for 10 years, without a lot of traction outside of the CFS community. They want to broaden the outreach to providers outside the country and that there is no better (?) way to do that than the IOM. They are specifically going to look at results from CDC study.
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  3. waiting

    waiting Senior Member

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    Eileen is discussing how they said that CFSAC would have input; however, they had no knowledge until the contract was signed. She said she would like to state for the record that they (CFSAC) were not involved, all their comments were ignored in their going to the IOM. The prevailing thought in the community is that it can be cancelled because all contracts can. The best solution is to adopt the CCC, like the ME/CFS experts recommended. The conflict of interest in the SOW says that NIH will work with IOM. Yet, IOM says the sponsor will not play a role. So, I don't know how that is going to bring about an unbiased result. For the record, the majority of stakeholders object to the study. Marshall asked if she needed a response to that or if it was just for the record.
    Eileen asked Dr. Lee to respond to the 2 issues plus for the record.
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  4. Nielk

    Nielk

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    Eileen - objects to the fact that 10 voting CFSAC members were left in the dark, ignored.
    The contract can still be canceled. All contracts can!
    Conflict of interest - NIH working with IOM with their workshop yet the IOM says that the sponsor of the contract cannot have any input with the study once it's started.
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  5. Nielk

    Nielk

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    Lee - wants to remind CFSAC is only an advisory committee...i.e. no power.
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  6. Nielk

    Nielk

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    Lee - threat to advocacy community! Do not criticize issues???????????????
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  7. waiting

    waiting Senior Member

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    Dr. Lee said it is an advisory committee, not an oversight committee...? The NIH is involved... Dr. Lee is referring to vitriol and personal attacks online about the IOM. (this is a statement that she's reading out).... respectfully offered criticisms and divergent opinions are welcome, but implying that IOM committee members are ..... could backfire. I have had patient members apologize to me in private about the vitriolic behaviour about another member.
    Marshall now just prevented Eileen from making another comment (time issue). Now, I think it was Steve Krafchik that also said he had a comment.
    Now Marshall relented and let Eileen make another comment. She is talking about them cherry-picking -- that it's not fair to say that about members. She mentioned all the great blogs out there... and her objection to this characterization...

    Steve said the CCC is more alive and current than the Fukuda definition which is used by the CDC website -- a lot older. I would hope the IOM would look at the Primer and use the Primer because that is a good basis for clinical care in this field.... the motion I made and was passed was related to having a consensus workshop with experts in the community. I have been a member of IOM study and so have respect for the committee.... debacle for GWS committee. Where else can we get a clinical definition than from those who treat these patients?

    Marshall mentioned abbreviated format, is moving the agenda on. Susan Maier now speaking about NIH.
  8. Nielk

    Nielk

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    Am I the only one who feel that Lee just threatened us to keep quiet as far as criticizing this process?
  9. readyforlife

    readyforlife Senior Member

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    I'm still pissed there is no sound!! I've waited 6 months for this and I can't even listen to it. I'm not going to sit on my cell phone for 5 hours that's for sure. Fricken donkey idiots...pisses me off!!!
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  10. Nielk

    Nielk

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    This is definitely ridiculous!!!! This is called a webinar?
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  11. waiting

    waiting Senior Member

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    I think it's Jeanette Burmeister speaking?? (Marshall said the time to be made up will NOT interfere with the public comment section).
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  12. Nielk

    Nielk

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    Jeanette Burmeister testimony.
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  13. WillowJ

    WillowJ Senior Member

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    I have no audio on theweb; do we have to watch slides on the web and listen on the phone or am I having tech issues?
  14. Nielk

    Nielk

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    I cn't remember when was the last time that I had this much fun
    Yes. Correct. We have to do both.
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  15. Nielk

    Nielk

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    Wow ...this is fun! nothing like staring at a blank screen and listening to a silent phone!
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  16. WillowJ

    WillowJ Senior Member

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    Wow. That is some awkward.

    Thanks for the info, @Nielk .
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  17. Nielk

    Nielk

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  18. readyforlife

    readyforlife Senior Member

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    2:00PM Liaison representatives - reports

    It seems like most of this time was spent talking about what their organizations do and who the are. The rest just seems like a repeat of what has been said before. The last presenter had some good things to say. I think it was the New Jersey association?
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  19. Nielk

    Nielk

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    Very strong testimony by our own @Andrew - Thank you!
    Andrew, can you post your testimony here?
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  20. Andrew

    Andrew Senior Member

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    Did my presentation get through. I started talking and kept hearing beeps like someone was dialing a phone. It was very distracting but I figured I better keep going. But I have no idea if the who presentation or only part of it got through.
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