IOM report release date 10 Feb 2015

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Denise

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Valentijn

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Here's the email I got:
This email is to confirm that you are registered to attend the public release event of the report by the IOM's Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome virtually via webcast. The event will be held on February 10th, 2015 from 11:00 am-12:00 pm EST.

A link for the webcast will be available shortly before the event begins. The public will be able to submit questions online, and a PowerPoint will be available at that time.

Webcast attendees may write in and ask questions to the committee during the event. Information on how to submit questions will be available shortly before the event begins at 11:00 a.m. on February 10, 2015 on the public release webpage.
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Bob

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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?
 
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Gijs

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This report will be very bad for ME/CFS. I think CBT will be the therapy for this disease according this report.
 
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Valentijn

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Bob said:
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?
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It seems to be the only way to get a link to the webcast.
 
Ember

Ember

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Gijs said:
This report will be very bad for ME/CFS. I think CBT will be the therapy for this disease according this report.
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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:”
Statement of Work
The committee should communicate and coordinate with the Office of Disease Prevention at NIH regarding their ongoing Evidence-based Methodology Workshop for ME/CFS in an effort to minimize overlap and maximize synergy. The coordination with NIH should assure that relevant information is shared and that key messages are coordinated.
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Background and 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. You will be hearing more details from Drs. Unger and Maier today.
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The IOM Committee may not have had the benefit of the final Evidence Report that the NIH Panel seems largely to have ignored.
 
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Denise

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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.
 
Ember

Ember

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Denise said:
I believe the IOM committee did an evidence review (presumably based around clinical things) for their report.
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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.
 
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D

Denise

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Ember said:
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 Draft Report makes no mention of ME.
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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.
 
Ember

Ember

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Denise said:
I believe that Maier said there would synergy between P2P and IOM but I don't think we have seen any evidence of it.
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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.
 
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Nielk

Nielk

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Public release event for the IOM ME/CFS Study - February 10, 2015
The committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will release its consensus report on February 10th, 2015. A public release event will be held at the Keck Center of the National Academies in Washington, D.C.

Interested individuals will be able to attend the public release event in person or virtually via webcast. Persons who plan on attending the meeting in person are requested to register in advance prior to February 5, 2015. Registration for persons attending the meeting in person will be open until seating capacity of the conference room is reached. All participants may participate via webcast. A link for the webcast will be available on the public release webpage shortly before the event begins at 11:00 a.m. on February 10, 2015. The public will be able to submit questions online, and a PowerPoint will be available at that time. A PDF of the report will be available for free download on the event webpage beginning at 11 AM.

For more details of the event please visit the public release webpage.
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Interesting that the report will only be released at this event. How can one prepare questions if they have not seen the report?
 
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Valentijn

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Nielk said:
Interesting that the report will only be released at this event. How can one prepare questions if they have not seen the report?
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I think they only expect spontaneous questions in immediate response to the presentation.
 
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