Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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CAA stops dissenting opinions

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

  1. Andrew

    Andrew Senior Member

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    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.
     
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  2. Nielk

    Nielk

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    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

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    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

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    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.
     
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  5. justinreilly

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

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    Thats ridiculous. where'd you post these? Reasearchfirst blog, their Facebook?
     
  6. Ecoclimber

    Ecoclimber No Longer On PR

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  7. justinreilly

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

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    they've had that solvecfs slogan for a while, since before they started sometimes using mecfs.
     
  8. Andrew

    Andrew Senior Member

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    I found my other message that the CAA is still holding in moderation:

     
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  9. justinreilly

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

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    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.

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