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CDC Treatment Evidence Review - updated thread. Request for comment from 17th May 2021.

Discussion in '2021 USA CDC ME/CFS Diagnosis and Treatment Review' started by Medfeb, Jul 2, 2019.

  1. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    582
    Sorry if I'm missing something - why was the review done of bad evidence if the evidence was too low quality to base guidelines on it?
     
  2. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    Location:
    UK
    I guess because until someone has done a review for them laying out what research has been done, they don't know what the latest evidence is.
     
  3. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    314
    Location:
    Adelaide, Australia
    Joh, Yessica, alktipping and 9 others like this.
  4. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    397
    Location:
    Australia
    Thanks for sharing our submission. Unfortunately, we’ve had to resubmit because the references somehow disappeared when the document was formatted and I didn’t notice. *sigh*

    Hopefully the corrected document will be uploaded soon.
     
    Joh, Simbindi, Yessica and 6 others like this.
  5. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    14,345
    Location:
    Hampshire, UK
    From a Solve email.

    "Solve M.E. evaluated if the report serves its purpose. We asked:

    1. Did the CDC accomplish the goal it published?
    2. Does this effort comply with Congressional intent?
    3. Did this effort contribute to the field?
    Our answers are: no, no, and no.

    Solve M.E. Public Comment Highlights:

    • Solve M.E. strongly recommends against the adoption of this review in any format
    • The review does not meet congressional intentions to “address medical misinformation and stigma,” “resolve case definition issues,” or “work with disease experts and patients”
    • Solve M.E. joins others who criticize the applicability of the findings, ineffectiveness of the review, failure to address harmful evidence, and failure to address bias
    • Solve M.E. encourages the utilization and incorporation of new data related to SARS-CoV-2 and Long COVID
    • CDC does not meet its own goals of publishing evidence-based treatment guidelines
    • Solve M.E. makes recommendations to improve patient input and raises concerns at the lack of transparency in selecting contractors and contractor’s review process
    Read our full comments on the review here."

    Also in same email.

    "In a recent public comment period, Solve M.E. criticized the CDC for failing to meet the guidance of Congress. A recent, potentially damaging, draft review took two years of CDC resources but doesn’t address any of the intentions published by Congress. Congress needs to know that CDC failing to meet its instructions to:

    • “collaborate with disease experts”
    • “resolve the case definition issues”
    • “counter medical misinformation and stigma”
    Send a message to your members of Congress today and ask them to ensure CDC is meeting its commitments to Congress and all Americans touched by ME/CFS.

    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00145 "
     
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    8,764
    Location:
    UK West Midlands
    Succinctly put by Solve.
     
    Simbindi, Yessica, rvallee and 3 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,861
    Location:
    UK
    didn't know where to post this but thought maybe someone in the US should suggest they update their website Last medically reviewed on July 18, 2017
    https://www.medicalnewstoday.com/articles/8877
     
    Yessica, Joh, Hutan and 5 others like this.

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