Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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List of nominees to the IOM panel by patient groups and advocates

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 4, 2013.

  1. justinreilly

    justinreilly Senior Member

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    ooo… what is this requirement that 'the panel be highly competent in the issues'? It seems that a panel of mostly non experts would not be highly competent in the issues, if by 'the issues' they mean the issues they are to decide, i.e. an MEcfs case definition.

    I think it's obvious that people aren't only worried about a situation in which there is not one person with ME clinical experience, but the apparently ok by their own rules situation of having only a very few ME clinicians.
     
  2. justinreilly

    justinreilly Senior Member

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    Jennie, thanks for making a FOIA request for the contract. I was starting to do that and now I have one less thing to do.
    : )
     
    jspotila likes this.
  3. justinreilly

    justinreilly Senior Member

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    I sent some questions to Carol Head, new CAA CEO. I asked who CAA nominated for the IoM panel and whether CAA nominated or endorsed Suzanne Vernon for the GWI redefinition panel. Her response on these topics:

    Not happy to see them nominating non-experts in ME.

    Very disappointed in Dr. Komaroff for nominating Dr. Vernon.
     
    Nielk likes this.

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