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CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

Discussion in 'ME/CFS research news' started by Melanie, Jul 12, 2018.

  1. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,248
    Location:
    Stanford, CA
    That's a good question. Spoiler alert: though I went to a conference to discuss the site in 2016, I haven't been involved in subsequent rounds. That means I'm not sure if they showed people drafts, or solicited and took down feedback and ideas in a more general way, without something that concrete.

    To further complicate things, they're soliciting feedback kind of always, so there was a recent round of calls to stakeholders that actually had nothing to do with the current changes and will instead inform some future changes.
     
    Joh, Inara and adambeyoncelowe like this.
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    2,614
    Very opaque.
     
    JaimeS likes this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    5,265
    Location:
    Norway
    JAMA Network writes about CDC's new website for CFS

    Chronic Fatigue Care

    The article is short and not very informative.
     
    Sly Saint, ladycatlover, Joh and 6 others like this.
  4. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    2,267
    Location:
    Holodeck #2
    Hard to recommend this. Article is all about the fatigue.

    1. Article is titled "Chronic Fatigue Care".:banghead:

    2. Article states fatigue is responsible for impairment of function. CDC does not say this.

    Article: "People with ME/CFS may experience extreme fatigue that prevents them from doing everyday activities"
    CDC: "ME/CFS is characterized by reduced ability to perform pre-illness activities that lasts for more than 6 months and is accompanied by profound fatigue."

    3. Article says pacing reduces fatigue. CDC says pacing helps manage PEM.

    Article: "They may also recommend pacing activities to help reduce fatigue."
    CDC: "An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing)"
     
    ladycatlover, andypants, Joh and 8 others like this.

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