Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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New Fluge & Mella rituximab study: post MEDIA LINKS here

Discussion in 'General ME/CFS News' started by Sasha, Jul 1, 2015.

  1. Sasha

    Sasha Fine, thank you

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    This thread isn’t to discuss the study – there’s a thread elsewhere for that – but is for posting links to any media coverage. I’ll update this first post with any links posted below.

    If there are any media stories, it’s a great opportunity for us to hijack the media – especially by posting comments on online stories, or writing to local/national newspapers – to get out the points that we want to make.

    For example, we should be telling people that our biomedical research charities exist, telling them that we’ve donated and that so should they. Invest in ME’s UK rituximab trial is a good one to mention, for obvious reasons, but so are the others. We need to grow our donor base.

    And we need to educate the public – let them know that this is a serious, organic disease. We can cite this study and the big, recent reports from the IOM and P2P.

    I’ve written an article explaining how to do this. We just need one millionaire to read your comment, and... :cool:

    Here are the news stories:

    Metro (France) - commentable! :)

    Spektrum (Germany) - commentable! :)

    Dagens Medisin (Norway) - commentable! :)

    Helsingin Sanomat (Finland) - commentable! :)

    FranceTVInfo (France, public TV) - commentable! :)

    Sante magazine (France) - not commentable :meh:

    New Scientist (UK)- not commentable :meh:

    Mylder (Norway) - not commentable :meh:

    IFLScience - not commentable :meh:
     
    Last edited: Jul 18, 2015
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  2. Scarecrow

    Scarecrow Annie Gsampel

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    <Involuntary sharp intake of breath>

    The gall of the man.
     
  3. Cheshire

    Cheshire Senior Member

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    The main author of the tragedy should be held accountable for it... This guy is totally deprived of any ethics.
     
    Last edited: Jul 4, 2015
  4. Esther12

    Esther12 Senior Member

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    Wessely is so utterly loathsome.
     
  5. barbc56

    barbc56 Senior Member

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    I'm not even sure what he's saying. Is it me or maybe the wording is on purpose? Kind of like a back handed compliment.

    What study is he talking about?

    Geese!! $#@$/&€=$$##

    Barb
    ETA Didn't see the link. :bang-head::bang-head:

    Thanks @Scarecrow
     
    Scarecrow likes this.
  6. Nielk

    Nielk

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    Why is he always the one that they interview
     
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  7. Sasha

    Sasha Fine, thank you

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    :jaw-drop:

    There's no jaw-drop big enough to do that justice.

    But what a sign that the wind has changed... :)
     
  8. Sasha

    Sasha Fine, thank you

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    That's what we always ask ourselves but with any luck, that will start to change now.
     
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  9. Scarecrow

    Scarecrow Annie Gsampel

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    I doubt it.

    It's actually kind of sad that we are focussing on a comment by Wessely rather than the story itself, although of course the results aren't news to us. But he is such a tw*t [insert the vowel of your choice].

    Just waiting for the news to break in the tabloids........................ [tapping impatiently]
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    The current Simon Wessley sounds so much better than the old one...
     
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  11. GalaxiiGrl

    GalaxiiGrl

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    Wessely's quote is very sneaky, I think. He's not admitting to being wrong at all. In his mind, he has ALWAYS taken ME patients seriously.... as people suffering from a psychosomatic illness who just need CBT and GET to be cured. Especially important when taken together with his recent crowing about his belief that there is no difference between illness in the body and in the mind, or however he likes to phrase his nonsense. He's a slippery snake, indeed.
     
  12. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Help it along! Send the editors links and story suggestions as @Sasha suggests here http://phoenixrising.me/archives/26876 .
     
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  13. A.B.

    A.B. Senior Member

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    Note how he doesn't say that the psychosomatic explanations may have been wrong. He says "It's tragic that it might take a study like this to take sufferers seriously."

    He can't openly say it's psychosomatic, but I bet he will continue to insist that there are psychosocial components to CFS that must be treated with psychotherapy.

    If this seems contradictory, there are still psychiatrists who think that the mind is causing diseases. From their point of view, that resulting diseases can be treated pharmacologically doesn't mean that there isn't an underlying psychological problem (which of course only they can see). They can't prove any of this but they just "know" they're right, and they also know what they can or cannot say in public. The vague statements about holistic treatments, or mind and body being inseparable, etc. are really just shorthand for saying "your mind is causing disease and we want to treat it with CBT".
     
    Last edited: Jul 1, 2015
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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  15. Cheshire

    Cheshire Senior Member

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    Yep, his mate Rona Moss Morris is working on the use of CBT to allieviate fatigue in MS...
     
  16. lansbergen

    lansbergen Senior Member

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    And who's fault is that?
     
  17. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    OMG! How can anyone, other than those with a financial interest, take them seriously?
     
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  18. Soundthealarm21

    Soundthealarm21 Senior Member

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    I think Wessley just thinks we'll forget or something. I mean some of us have pretty bad brain fog, but not that bad...
     
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  19. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  20. Sasha

    Sasha Fine, thank you

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    Anyhoo...

    In terms of finding news stories about the rtx paper, I don't know if anyone gets media alerts or whatever for this stuff. I find Google is a bit useless for finding brand-new news stories on anything.
     
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