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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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REMINDER Web presentation today - Dr. Leonard Jason

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CJB, Apr 14, 2010.

  1. CJB

    CJB Senior Member

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  2. Koan

    Koan Be the change.

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    I registered but did not receive a confirmation email, as promised. Also, the link I was provided disappeared, repeatedly, as the page automatically navigated to CAA.

    So, I don't know if my registration went through, or not...

    Also, on the CAA site they say it begins at 2 pm but they do not specify the time zone. You say it will begin less that three hours after 12:30. So, as you can imagine, I'm super confused.

    And, yes, I know, I'm almost always super confused

    ;)
  3. pollycbr125

    pollycbr125 Senior Member

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    i registered this afternoon and got the confirmation email plus a reminder later on koan so maybe check your junk or spam folders
  4. CJB

    CJB Senior Member

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    I just registered this morning, and here's the confirmation:

    Dear CJ,
    Thank you for registering for:
    Defining CFS: Diagnostic Criteria and Case Definitions
    Wednesday, April 14, 2010 2:00 PM - 3:15 PM EDT

    it's approaching 10:15am here on the West Coast, so I'm expecting it to start in just about 2 hours.

    I won't know for sure until it begins - I've gotten it wrong before.

    Koan, you need a link with a special id number to join the webcase, so I'd definitely try to register again.
  5. Jerry S

    Jerry S Senior Member

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    The Webinar will be starting at 2:00 EDT - about 45 minutes from now - as I read it.

    I have my registration number and will be watching. Leonard Jason is a local guy, from Depaul University about a mile from me.
  6. Koan

    Koan Be the change.

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    Oh dear! Now what have I done?!

    I went back to register again and ending up downloading Go to Meeting and now I appear to be waiting for it to begin as though I'm a participant!!! Tell me that's not so!

    :eek:

    Ok, wait...

    Just got the email which says 2pm Eastern Daylight time. :ashamed: Am I not in EDT? Isn't that in 40 minutes? I'm so confused!

    I'm going to post and then try to find my way back to this post (wish me luck on that one!) when I've sorted out the time thing.

    :tongue:
  7. Koan

    Koan Be the change.

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    Oh, Jerry, you and I are in the same time zone (or warp) which is reassuring!

    30 min!

    Probably
  8. CJB

    CJB Senior Member

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    LOL -- it ENDS at 3:15. Thanks everyone. That's why I posted. This has happened before.
  9. Jerry S

    Jerry S Senior Member

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    I wish you luck, Koan! I think you got the time thing right, in any case. :Sign Peace:
  10. Koan

    Koan Be the change.

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    Ok, CJ, you and I are quite the pair, time wise! ;)
  11. Jerry S

    Jerry S Senior Member

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    I read it it the same way you did at first, CJB. It took me a couple days to sort it out. Thanks for the reminders!
  12. CJB

    CJB Senior Member

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    I just couldn't figure out what you were doing wrong!!!!!!!
  13. _Kim_

    _Kim_ Guest

    CJ,

    Thanks for the reminder. I had forgotten all about this one.
  14. Koan

    Koan Be the change.

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    CJ,

    Time is for linear thinkers!

    That's our story and we're sticking to it.

    ;)
  15. Koan

    Koan Be the change.

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    I had assumed that Kim McCleary and Dr Jason would be on their computer cameras. Should I be able to see them?
  16. Cort

    Cort Phoenix Rising Founder

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    Got in the right time (thanks!) but still the same old problem - it cannot find a folder to put the program in.
  17. Lily

    Lily *Believe*

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    I am having a difficult time finding any thing funny since I am in a bad crash at the moment, but this thread is pretty darn funny to me. It should be preserved as proof of our cognitive disability.
    CJB likes this.
  18. shrewsbury

    shrewsbury member

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    thanks lily :D:tear::D:Retro smile:
  19. Jerry S

    Jerry S Senior Member

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    :In bed: Good webinar. Must rest brain!
  20. CBS

    CBS Senior Member

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    92.6% of CDC sample does not have ME/CFS!

    That was as cogent a description of the problems with the CDC definitions as I have ever heard. I wish they'd summarize it - especially the slide about how in a low prevalence disorder, 95% selectivity and 95% specificity leads to a sample with 5000 of 5399 misclassified subjects - 92.6% of your sample (yes Bill Reeves, your sample) does not have ME/CFS!

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