1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

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

    Messages:
    1,980
    Likes:
    1,274
    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

    Messages:
    5,476
    Likes:
    6,089
    Queens, NY
    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 IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    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

See more popular forum discussions.

Share This Page