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Critical PACE article praising Alem Matthees on News.com.au

Discussion in 'General ME/CFS News' started by Esther12, Jan 7, 2017.

  1. Esther12

    Esther12 Senior Member

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    Neunistiva, PennyIA, rosie26 and 38 others like this.
  2. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    It's a good article, and it's a site with huge traffic in Australia.

    ETA: article traffic currently at 856 readers, 600 readers above the next most popular headline.
     
    JaimeS, Mel9, MEMum and 9 others like this.
  3. alex3619

    alex3619 Senior Member

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    I read this an hour or two ago. It covers some of the biomedical research as well, including Ron Davis, and discusses the replication crisis.
     
    PennyIA, JaimeS, Mel9 and 12 others like this.
  4. Murph

    Murph :)

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    Thanks for reading. I wrote the piece, inspired by Sasha Nimmo's interview with Alem. I was helped enormously by Alem himself, plus Tom Kindlon and Carolyn Wilshire.

    The forums here gave me a huge amount to work with in assembling the bits and pieces that made up the story! I'm very pleased it seems to be getting a good audience. :)
     
    PennyIA, ukxmrv, Neunistiva and 60 others like this.
  5. Sean

    Sean Senior Member

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    Very good article. :)

    Thanks to Murph, and to the editor for running it. :thumbsup:
     
    PennyIA, Comet, MEMum and 15 others like this.
  6. Kati

    Kati Patient in training

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    Well done @Murph, thank you so very much!
     
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  7. Esther12

    Esther12 Senior Member

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    Thanks to all involved. It does seem such a great story for the media to pick up on, so hopefully this will encourage others to cover it.
     
    JaimeS, Mel9, Dolphin and 5 others like this.
  8. trishrhymes

    trishrhymes Senior Member

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    Well done @Murph. Excellent article.
     
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  9. AndyPR

    AndyPR Senior Member

    Thanks very much for the excellent article @Murph , any chance you could request the text below Alem's photo right at the top of the article be amended, currently reads "A letter from Alem Matthees helped lead to a breakthrough in chronic fatigue.", I would want it to have "syndrome" added to the end.

    Chronic fatigue is a symptom, Chronic Fatigue Syndrome, if we have to use that name, and for the purposes of the article that is what has been used, is the condition that we suffer from.
     
    JaimeS, Mel9, Jan and 11 others like this.
  10. Sasha

    Sasha Fine, thank you

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    This is terrific, @Murph! That's great that you managed to get this somewhere so high-profile.

    I'd agree with Andy that it would be good to clear up a few instances of "chronic fatigue" instead of "chronic fatigue syndrome" - if you do a word search, you'll find them.

    Also, Ron Davis doesn't head the OMF, Linda Tannenbaum does. But Ron Davis heads their Scientific Advisory Board:

    http://www.openmedicinefoundation.org/scientific-advisory-board/

    These are minor things, though - your article is top stuff!

    It's a pity we can't leave comments. I'd like Australians to know that thousands of patients overseas are grateful to an Australian patient - Alem Matthees - whose actions are making such a difference.
     
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  11. trishrhymes

    trishrhymes Senior Member

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    It could be said that the PACE trial was studying chronic fatigue, not CFS or ME, since the Oxford definition they used only requires the single symptom 6 months unexplained fatigue.
     
    dyfalbarhau, JaimeS and Mel9 like this.
  12. Sasha

    Sasha Fine, thank you

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    But they claimed to be studying CFS and if CF and CFS are used interchangeably in the article it will give the impression that they're the same thing. The article doesn't explain the Oxford issue (rightly, IMO, because that would be too much detail) so the reader doesn't have that context.
     
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  13. Murph

    Murph :)

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    Cheers

    Good tip - I will see if I can get those changed tomorrow morning.
     
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  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Murph

    First, thanks for the awesome article - I shared on my facebook, something I do rarely.

    Second, is about my pet peeves.

    Could it even go one better and use 'Myaglic Encephalomyelitis' throughout?

    'Chronic fatigue syndrome' has so much historical negative connotations to overcome. It feels more like an accusation than a diagnosis.

    Myalgic encephalomyelitis, except perhaps in the UK, carries none or very little negative baggage.

    Same with "ME/CFS" - in my perfect world we'd only use "ME" and let 'cfs' fade away like a bad nightmare.

    I realize these changes are probably out of your control, but wanted to express my thoughts.
     
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  15. Esther12

    Esther12 Senior Member

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    @Murph

    If looking at minor errors, it looks like you talk about the 'tribunal' at the ICO stage here, when the tribunal was the final appeal:

     
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  16. Barry53

    Barry53 Senior Member

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    Excellent article @Murph, helping to set the record straight. We need this to get wider exposure in the UK somehow.
     
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  17. Murph

    Murph :)

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    My editor just gave me some feedback. 85,000 readers so far! That's a strong result, even for stories on topics with far more population-wide appeal. (Not quite as far-reaching as a top-rating TED talk obviously, but not too shabby!)
     
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