The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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How should we exploit big, positive ME/CFS news stories when they get in the media?

Discussion in 'Advocacy Projects' started by Sasha, Feb 28, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Let's hope the latest Hornig/Lipkin cytokine study is the first of more good stuff to come!

    I always feel caught on the hop, though.

    How can we make the most of these big stories in the media, in terms of getting more research funding and so on?

    What resources should we have ready?

    What should we do when the stories start appearing?
     
    mango, *GG* and oceiv like this.
  2. OverTheHills

    OverTheHills

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    Can we get a press accreditation for some of the writers at PR so we have advance warning (pre-embargo copy) and then can marshall the troops and provide informed comment to other press outlets. Just like some other people do.
    OTH
     
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  3. Sasha

    Sasha Fine, thank you

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    What do you think of that, @Simon?
     
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  4. Simon

    Simon

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    Good in theory, but I tried to register for this paper: PR doesn't count as media under their rules.
     
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  5. OverTheHills

    OverTheHills

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    @Simon What would need to change so that PR did qualify?
     
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  6. oceiv

    oceiv Senior Member

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    Great questions. One thing that might be helpful to have on hand is the twitter handles and emails of health and medical reporters. I tried to find David Tuller's email or twitter yesterday to post in the Hornig study press thread and couldn't. He wrote 2 of the 3 recent NYT articles on CFS/ME, He is a freelance writer who has a friend with this illness. He has written about CFS/ME for years and has incorporated reader/patient feedback from previous articles into his articles in subsequent articles. In one interview, he talked about how hard it has been to get editors to accept pitches for articles about CFS/ME. I eventually found one email address for him but it was associated with his day job at a university. Didn't know if we should contact him there.

    If we had such a list and also one of editors, we could give instant evidence to editors that they should approve CFS/ME stories more often. .If we had such a list, we might have to post the list in such a way that decreases spam for these reporters. We want this effort to be positive, not negative for them. For example writing "reporterATreportingDOTcom" instead of "reporter@reporting.com." Other people could probably better address the spam, crawler, bot issues.
     
    Last edited: Feb 28, 2015
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  7. Sasha

    Sasha Fine, thank you

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    Journalists seem quite well-defended against direct contact, don't they! Maybe comments on articles are what they prefer to get (and click-traffic).
     

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