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CDC update their 'Voice of the Patient' section of their ME/CFS information

Discussion in 'General ME/CFS news' started by Andy, May 14, 2019.

  1. Andy

    Andy Committee Member

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    Andy, May 14, 2019
    #1
    Sly Saint, Yessica, andypants and 8 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    That's not much for a $5M/y budget. Where the hell is that funding going? So far in the past few years I have not seen more than perhaps $10K worth of work out of them on this topic.

    It's better than nothing but the output does not match the budget. If there's work out there we're just not seeing then it's equally useless if we can't see anything useful coming out of it.
     
    rvallee, May 14, 2019
    #2
    James, DokaGirl, alktipping and 3 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    There are only 4 stories there, they are good, but I'm pretty sure that most, if not all of them, were there before.

    And there's now a 30 second video which is ok, but there's only so much a 30 second video can say. Also, it has the woman dropping papers at her desk at the office - giving a bit of an unrealistic idea about how likely it is for a person with ME/CFS to even be at an office.

    So, as updates go, it's pretty minor. That said, the CDC ME/CFS material taken as a whole, while having some flaws still, is incredibly useful for changing how the medical profession sees the illness. I'm glad the CDC is tweeting to bring attention to it. Maybe they could add some more stories?
     
    Hutan, May 14, 2019
    #3
    MEMarge, Sly Saint, Subtropical Island and 10 others like this.
  4. Denise

    Denise Senior Member (Voting Rights)

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    The CDC is still conducting the multi-site study which probably uses a big portion of the budget.
    (ETA - I'm not saying one way or the other if that's a good thing or not.
    They also have a project underway with Georgia pediatricians.
    But they should do a huge concerted effort to educate healthcare professionals, they should help drive efforts to de-stigmatize everything surrounding this disease, they should.....)
     
    Last edited: May 14, 2019
    Denise, May 14, 2019
    #4
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  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Denise

    Yes, we really need the CDC to do a great deal of effective outreach. The CDC gets health professionals' attention.
     
    DokaGirl, May 14, 2019
    #5
    MEMarge, Andy, Hutan and 1 other person like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    First I've heard of it. Are there any details available?
     
    rvallee, May 14, 2019
    #6
    DokaGirl likes this.
  7. Denise

    Denise Senior Member (Voting Rights)

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    Denise, May 14, 2019
    #7
    ahimsa, Sly Saint, DokaGirl and 1 other person like this.

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