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CDC patient toolkit

Discussion in 'BioMedical ME/CFS News' started by Milo, Feb 22, 2021.

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  1. Milo

    Milo Senior Member (Voting Rights)

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    So this came up on my google alert, a CDC toolkit for patients to prepare themselves before, during and after a doctor visit. It leaves me with several questions:

    1) Is that all that they’ve got?
    2) Really, CDC, really?
    3) it could have applied on diabetes patient or any other disease. Nothing we do not know. (Ok i know, it’s not a question)
    4) what on earth is CDC doing? Controlling diseases?
    5) What happened to the study you started 5 years ago?


    https://www.cdc.gov/me-cfs/resources/patient-toolkit.html
     
    Medfeb, Yessica, alktipping and 5 others like this.
  2. Trish

    Trish Moderator Staff Member

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    It is very very basic. Designed I guess for people of all education levels, so dumbed down.
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes we always have to take a step back when reviewing content about MECFS aimed at the general public or MECFS patients generally remembering that as people engaged in the ME community, especially those who have been for decades, we aren’t that general audience.
     
  4. Milo

    Milo Senior Member (Voting Rights)

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    I understand the need to make this info accessible to all, but how about answering ME specific problems, related to doctors visits, such as what to say when your dr wants to send you for CBT and GET?
    This is beyond dumbing down, it is simply providing content that is meaningless to a majority of patients who can’t even access competent care.
     
  5. Trish

    Trish Moderator Staff Member

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    So it would be useful to have an additional document about treatment - what should not be recommended - increasing activity beyond what you can do without crashing, and psychological therapy if you don't have a psychological problem, and what should be recommended - pacing and treatments for symptoms. And that there is no cure, so to avoid doctors who claim they can cure ME.
     
  6. Denise

    Denise Senior Member (Voting Rights)

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    The document on treatment is likely to take a while since CDC hasn't finished its review of the treatment evidence review they contracted for. (It is due out at any time for public comment.)
     
    Michelle, Trish, mango and 3 others like this.

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