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US: CDC - Proposed Data Collection Submitted for Public Comment and Recommendations Aug 2020

Discussion in 'General ME/CFS News' started by Sly Saint, Aug 2, 2020 at 11:09 AM.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.federalregister.gov/doc...mitted-for-public-comment-and-recommendations
     
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  2. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Thanks for posting, @Sly Saint. I was surprised to see this now given that the adult Multi-site study's data collection is done or at least near so and the pediatric study is well underway.

    That said, it may provide an opportunity to comment on instruments that are not adequate, have possible ceiling/floor effects in more severe populations, are more burdensome than represented here, etc.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Good that the OMB will handle the analysis. It's a serious number-crunching institution that doesn't take sides. I'm hopeful they will produce a reliable assessment of the situation.

    This requires more brainpower than I can muster, however.
     
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  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    I'm confused too. CDC has been funded to the tune of $5MM per year for ME/CFS and I thought that the multi-site studies are meant to be the prime focus of the work. The whole project does seem a bit of a black hole...... hope I'm wrong.
     
    Andy likes this.
  5. Medfeb

    Medfeb Senior Member (Voting Rights)

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    If I remember correctly, the CDC has published one paper so far - this 2017 paper, which was mostly a methods paper but discussed some findings as well. Findings were also reported in CDC's 2016 MECFS Grand Rounds. I expect other papers are in the works but no idea when these will be published.

    CDC was still publishing papers on its 2005 epi study for a number of years after that. Dont remember when the last one was but it was not that long ago.
     
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