1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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CFSAC Webinar: March 11, 2014 from 12:00-5:00 PM Eastern Time

Discussion in 'Upcoming ME/CFS Events' started by Ember, Jan 28, 2014.

  1. Ember

    Ember Senior Member

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    Posted by Wildaisy:
    Nielk likes this.
  2. Mesurfer

    Mesurfer

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    It's only going to be a half day??? Again!
  3. Iquitos

    Iquitos Senior Member

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    The webinar's main purpose is to give the illusion they are doing something about this disease, the same illusion they have put forth since CFSAC was created. Nothing helpful has EVER come out of a CFSAC meeting; I don't expect that to change.
    Marty, Wildcat and ggingues like this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, actions speak louder than words!

    GG
    Wildcat likes this.
  5. Nielk

    Nielk

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    They called me that I have a speaking spot since I couldn't deliver in December.
    WillowJ and Wildcat like this.
  6. Sing

    Sing Senior Member

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    Squeaky wheel gets the grease
    WillowJ likes this.
  7. Nielk

    Nielk

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    I have a three minute speaking spot. What would you like CFSAC to hear?
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    go to hell?

    GG
    August59 likes this.
  9. Nielk

    Nielk

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    I hope you don't mean me?:eek:
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    No, not all, love you! Not the useless gov't which has done nothing of significance in a generation, and only muddies the waters!

    GG
    Iquitos and Nielk like this.
  11. Nielk

    Nielk

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    I am seeking first hand accounts of how CBT/GET has harmed you. If this type of "treatment" has been tried on you and you have seen a direct correlation with a decline in your ME/CFS symptoms, please reply here on this thread or PM me with a short account of your experience. I want to gather them and include them in my speaking spot at the next CFSAC (March 11th) webinar phone-inar.

    The format should be something like this:

    What is your age/sex?
    How long have you been sick?
    What was your level of functioning before CBT and/or GET?
    What is your level of functioning after CBT and/or GET?
    In what way has this effected the quality of your life ?
    Last edited: Feb 27, 2014
  12. Sasha

    Sasha Fine, thank you

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    I was hoping that someone giving testimony at CFSAC would talk about the appalling level of NIH underfunding (our usual $5m a year vs MS's $115 a year, despite it affecting roughly 40% of our numbers; $2.8m for us and $18m for male pattern baldness, according to Nancy Klimas) and how patients are being forced to try to crowdfund studies that the NIH should be paying for. I'd love there to be a mention of the crowdfunding campaign for the Lipkin microbiome project - we hope to have a website & FB page up very soon and it would be great to have the web address mentioned.

    Not sure if this appeals to you in particular, Gabby, but if not, maybe other people giving testimony might be interested.
    WillowJ, aimossy, ahimsa and 2 others like this.
  13. Ember

    Ember Senior Member

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    In case you find them useful, here are some quotations relevant to Dr. Unger's infamous study:

    http://forums.phoenixrising.me/inde...ng-unger-and-lipkin.24743/page-18#post-386946

    http://forums.phoenixrising.me/inde...-criteria-for-me-cfs.24969/page-3#post-383741

    http://forums.phoenixrising.me/inde...ase-definitions-now.23217/page-10#post-366763

    You might want to question too Dr. Lee's charge to the IOM Committee: “HHS has requested that the IOM committee coordinate with two ongoing HHS efforts concerning ME/CFS in order to minimize overlap and maximize synergy.”
    Nielk likes this.
  14. Ember

    Ember Senior Member

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    CFSAC Meeting December 2013: Webinar from Hell
    Posted on March 11, 2014 by Jeannette Burmeister
    Last edited: Mar 11, 2014
  15. Nielk

    Nielk

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    *Members of the public may follow the instructions below
    to access the webinar via computer or via the
    telephone. You will not need to use both.*

    Please use the speakers on your computer to listen to
    the webinar.

    The Webinar will be a "virtual meeting" using Adobe
    Connect Pro, a web conferencing product that allows users to conduct live meetings and presentations over the internet.

    Participants will have the option to either view and/or
    listen to the webinar via Adobe Connect Pro or by
    listening via telephone only.



    Adobe Connect URL:
    http://hhs.adobeconnect.com/owhcfsac/

    If you do not have access to a computer, you can
    listen via telephone using the dial in information listed
    below:

    Conference Call Number: 888-843-9210

    Participant Passcode: 6457922
  16. Nielk

    Nielk

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    It's starting in three minutes
  17. Nielk

    Nielk

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  18. Nielk

    Nielk

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    Roll call starting.....
  19. Nielk

    Nielk

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    Is anyone listening in?
  20. GalaxiiGrl

    GalaxiiGrl

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    I'm listening. The sound quality is pretty poor. It's pretty ridiculous that they didn't do a video feed for this. It's not difficult to do if you have the equipment, which we know they do. :rolleyes:

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