A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Has IOM responded to any patient feedback

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 18, 2014.

  1. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    I am getting the feeling this "openness" is nothing but a dog and pony show. Did the IOM change any panel members based on feedback. Have they made any changes to their process based on feedback from anyone? I know I asked them to allow review of the final draft by outside experts and advocates before the final draft goes out. They refused. I asked them to allow telephone testimony. They refused. I asked them to include more experts. They refused.

    What about you? Have you seen any willingness to do anything other than listen politely and then do what they had planned in the first place?
     
    Chris, justinreilly, Nielk and 2 others like this.
  2. Nielk

    Nielk

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    From what I understand the final panel is supposed to be decided in the study's first closed meeting.

    I too asked the IOM for a phone testimony which they declined.
     
    justinreilly likes this.
  3. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    NYC (& RI)
    I haven't heard back on my December 22 request that given the undisclosed biases that have been discovered with the panel, that they make it clear to the panel that they must disclose all biases, conflicts of interest and any other relevant information. I am asking IoM again today.

    Of course my request to cancel the contract and even to produce it were refused.

    And demands for an all-expert panel, which seem to be mandated by the Statement of Work- the SoW calls for a "panel of stakeholders and thought leaders." Non-experts and those who think "CFS" is neurasthenia and neurasthenia is somatization (Allegria) and that the Oxford definition is equally valid or superior to Fukuda (Mulrow) are not "thought leaders." Stakeholders are even more egregiously under-represented, unless you view those with some stake in reiterating IoM's anti-scientific position that ME is psychological to be stakeholders.
     
    Last edited: Jan 21, 2014

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