Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

IOM report release date 10 Feb 2015

Discussion in 'Upcoming ME/CFS Events' started by Denise, Jan 9, 2015.

  1. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449
    Dolphin, Bob and WillowJ like this.
  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    I don't see a link or anything.
     
    Denise likes this.
  3. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449
    Thank you for looking. (I thought it was just me who didn't see it.)
     
    WillowJ likes this.
  4. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    taniaaust1 and WillowJ like this.
  5. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449
  6. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    The "Register For This Meeting" link on the right side of the initial link :p
     
  7. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449

    :rofl:
    I am certain the link was not there when I first looked.... ( I say, while questioning my sanity)
     
    Valentijn likes this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    Here's the email I got:
     
  9. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    I guess we'll never know ... regarding either :lol:
     
    leela and WillowJ like this.
  10. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449

    So true!
     
  11. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,251
    England (south coast)
    These conference videos often only require registration if you intend to participate in some way, such as submitting a comment or question. Do we know if we need to register simply to watch?
     
  12. Gijs

    Gijs Senior Member

    Messages:
    651
    Likes:
    1,327
    This report will be very bad for ME/CFS. I think CBT will be the therapy for this disease according this report.
     
  13. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    It seems to be the only way to get a link to the webcast.
     
    Bob likes this.
  14. Ember

    Ember Senior Member

    Messages:
    2,107
    Likes:
    2,401
    The NIH Draft Report bodes ill for the IOM Report. The IOM Committee was commissioned to “develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology:”
    The IOM Committee may not have had the benefit of the final Evidence Report that the NIH Panel seems largely to have ignored.
     
  15. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449
    The IOM report was out of the IOM committee's hands by the time the final evidence review (for P2P) came out (Dec. 9).
    That said, I believe the IOM committee did an evidence review (presumably based around clinical things) for their report.
     
  16. Ember

    Ember Senior Member

    Messages:
    2,107
    Likes:
    2,401
    If such an IOM Committee evidence review exists, then wouldn't the IOM Committee have provided it to the NIH Panel to assure, consistent with the Statement of Work, “that relevant information is shared and that key messages are coordinated?” The NIH Draft Report makes no mention of ME or of the lack of evidence that CBT/GET treatment findings can be generalized to ME patients.
     
    Last edited: Jan 11, 2015
  17. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449

    I don't know that it was a formal review like the AHRQ review.
    I do not know if IOM provided anything to P2P.
    I don't know if NIH provided anything to P2P for that matter.
    I believe that Maier said there would synergy between P2P and IOM but I don't think we have seen any evidence of it.
     
  18. Ember

    Ember Senior Member

    Messages:
    2,107
    Likes:
    2,401
    The expectation of communication and coordination between these HHS efforts is found not only in Dr. Maier's comments, but also in Dr. Lee's charge to the IOM Committee and in the Statement of Work. The Statement of Work further specifies that relevant information is to be shared and key messages coordinated. We await the evidence of IOM compliance.

    If the IOM Committee did comply, we may well have seen the results reflected in the NIH Draft Report.
     
    Last edited: Jan 11, 2015
  19. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,633
    Interesting that the report will only be released at this event. How can one prepare questions if they have not seen the report?
     
    NK17, WillowJ and Bob like this.
  20. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,863
    I think they only expect spontaneous questions in immediate response to the presentation.
     

See more popular forum discussions.

Share This Page