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S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

Discussion in 'Open Letters and Replies' started by Science For ME, Nov 14, 2019.

  1. Andy

    Andy Committee Member

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    Hampshire, UK
    In a word, no.
     
  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    betwixt and between
    MEMarge and Andy like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    That's not nearly good enough. The warning should not be click-bait, it should be specific that it is about the review currently being re-evaluated for being entirely inadequate. It should also be in a colored box, something like a red background, much more prominent.

    This is design and communication 101. When you want to bring attention to something you highlight it, make it stand out, especially when it is meta content that informs about prior existing content. When you want to make it blend in the background you present it the same as the rest of the content, even though it is not itself part of the review, which is what it looks like.

    Very disappointed in Cochrane yet again, showing inability to do the most basic things a publishing company is easily able to do. Pathetic. Do better! We're literally asking for the bare minimum and you fail every single damn time at meeting this lowest of standards.
     
  4. Andy

    Andy Committee Member

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    21,898
    Location:
    Hampshire, UK
    Our original letter was highlighted to @Hilda Bastian (before we found a workaround to allow her to be able to post on the forum) and she has "added Science for ME to the list of groups of people with ME/CFS with an interest in further involvement, and you'll be hearing more as we progress, including discussion of how to involve groups and interested individuals"

    For those who wish to receive updates directly, "you can sign up for Cochrane's formal announcements by emailing: exerciseforme-cfsupdates@cochrane.org" - I assume a simple blank email is OK.
     
    Trish, MSEsperanza, ahimsa and 5 others like this.

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