Get PACE removed from clinical guidelines – sign the petition!
Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET ...
Discuss the article on the Forums.

CAA stops dissenting opinions

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Nov 11, 2013.

  1. Andrew

    Andrew Senior Member

    Messages:
    2,114
    Likes:
    1,838
    Los Angeles, USA
    Just thought I'd let you know that I posted dissenting opinions on two different CAA statements regarding the IOM about a month ago. They are still sitting in moderation.

    Here's one them:

    The initial discussion said to have a workshop. Many of us assumed that experts would hold decision making positions. That experts would vote. Instead, the HHS puts non-experts in charge of the process.

    Question: Why would someone turn to a group of inexperienced illness criteria authors (IOM) who did a poor job on their only previous attempt, instead of accepting the advice of the actual experts?

    Answer: From a business, medical, or humanitarian point of view, there is zero justification.

    The fact that they will be asking for input from experts makes no difference. It is still the IOM running the show. They will be deciding what weight to put on things without the advantage of years of experience.

    If it is true that expert input will be valued here, then why not simply accept what the majority of experts are saying. Cancel the contract, adopt the CCC, and let the experts continue with their work vetting the ICC.

    The process of developing the next generation definition has already begun. The IOM project fills no void. All it does is usurp an existing project and take control out of the hands of experts.

    Your comment is awaiting moderation.
     
    AzizaJ, alex3619, beaker and 5 others like this.
  2. Nielk

    Nielk

    Messages:
    6,364
    Likes:
    8,795
    It is pretty sad @Andrew that they don't seem to put much weight in what patients think or express. I thought they were an organization that worked for the patients.
     
  3. lnester7

    lnester7 Seven

    Messages:
    1,800
    Likes:
    2,058
    USA
    What we need is exposure exposure exposure., Make noise!!!! In the news find a way for it to be covered.

    Anybody with influence???
     
    Nielk likes this.
  4. taniaaust1

    taniaaust1

    Messages:
    10,397
    Likes:
    9,138
    Sth Australia
    You put that well Andrew. That's exactly the kind of thing I think which needs to be sent to media sources and ask them to try to find out Why? why is this being done? It makes no sense at all.
     
    justinreilly and Nielk like this.
  5. justinreilly

    justinreilly Senior Member

    Messages:
    2,495
    Likes:
    1,201
    NYC (& RI)
    Thats ridiculous. where'd you post these? Reasearchfirst blog, their Facebook?
     
  6. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    971
    Likes:
    2,357
  7. justinreilly

    justinreilly Senior Member

    Messages:
    2,495
    Likes:
    1,201
    NYC (& RI)
    they've had that solvecfs slogan for a while, since before they started sometimes using mecfs.
     
  8. Andrew

    Andrew Senior Member

    Messages:
    2,114
    Likes:
    1,838
    Los Angeles, USA
    I found my other message that the CAA is still holding in moderation:

     
    beaker, Izola, justinreilly and 2 others like this.
  9. justinreilly

    justinreilly Senior Member

    Messages:
    2,495
    Likes:
    1,201
    NYC (& RI)
    I've got a comment in held in moderation since the 14th on their last post. I think their strategy is to not publish any critical comments at least until that post has moved down from the latest post so very few people if anyone will see it. Though they have been going way beyond that with you, Andrew, not publishing yours for over a month!

    My comment:
    "Disappointed by CAA once again.

    Yes, HHS and IoM have credibility and dissemination expertise. But HHS could disseminate and lend credence to CCC more easily than going through the whole farcical process. And great we get dissemination, but what about the ACCURACY of what is disseminated?? and all the stress this is putting us thru trying to figure out whats going on and how to stop it.

    This is the third puff piece on IoM Ive seen in a few days. Looks like business as usual at CAA."

    http://solvecfs.org/cfids-association-update-cfs-advisory-committee/
     
    beaker likes this.

See more popular forum discussions.

Share This Page