Guidance on good journalism. All publicity is not good publicity.



  • Julie Rehmeyer (author, science writer and pwME) writes very well on how to report on contested illnesses. So often the quality and accuracy of journalism has been poor and unhelpful to pwME. This is a potentially very useful advocacy tool when dealing with journalists.

    Sometimes it's the case that we do ourselves no favours when courting the media either, especially with over-optimistic recovery anecdotes and sloppy language ("chronic fatigue" is the most obvious culprit).

    Julie's point about perceived bias is interesting, as many pieces have been authored by pwme and have been taken less seriously than those by people outside the ME community.
    "Some editors have expressed concern that as a patient, I may be biased in writing about ME/CFS. But this is a bit like considering Black reporters biased on stories about race."

    https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses


  • Community Moderator

    Thanks for sharing, @Claudia! I love that quote about the supposed bias of being a patient writing about illness. That’s such a pet peeve of mine, especially as it’s only our detractors who use it. Her parallel about race is spot on!



  • This is really good, thanks for posting. Also agree that the bias angle is very annoying and somewhat patronising. It's the responsibility of any writer to examine their bias, no matter what they are writing on and who they are.


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