Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Voices from the Shadows

Discussion in 'General ME/CFS News' started by Daisymay, Apr 30, 2012.

  1. Purple

    Purple Bundle of purpliness

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    The film Voices from the Shadows has been mentioned in the following BBC Radio programme at around 1:20 as part of a discussion of how disability is portrayed in film: http://www.bbc.co.uk/programmes/p012w459
    (this can be listened to for another 4 days - until 23 January 2013)

    Scott Jordan Harris who was interviewed in this programme mentions his review of the film - "A howl of desperation for those who cannot howl" - this is here: http://blogs.suntimes.com/foreignc/2012/02/life-in-the-shadows.html
     
    allyb likes this.
  2. Andrew

    Andrew Senior Member

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    I purchased a copy. This is the only ME/CFS movie I've seen where the feeling from the visuals spoke as strongly as the words.
     
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  3. *GG*

    *GG* Senior Member

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    Is this available for purchase from just about any where or select website(s)?

    GG
     
  4. SickOfSickness

    SickOfSickness Senior Member

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  5. Andrew

    Andrew Senior Member

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    It looks like they changed their licensing/sales structure.
     
  6. Bob

    Bob

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    rosie26 and RL_sparky like this.
  7. angee111

    angee111

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    This movie was excellent. Having the input from sufferers (Naomi I think it was), professionals, and carers ensured everyone's perspective was taken into account. I watched this with my mother and I think it really increased her understanding of what it's like to deal with this life-robbing illness. I cannot recommend it enough.
     
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  8. SickOfSickness

    SickOfSickness Senior Member

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    I'm sorry I missed it. I wish this thread had been bumped. I only found it today.
     
    Bob likes this.
  9. Bob

    Bob

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    I'll let you know if I come across another free screening.
    I didn't watch it - i thought it would be too upsetting for me to handle while I'm not well.
     
    halcyon likes this.
  10. Sasha

    Sasha Fine, thank you

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    I've never watched it, apart from the first few mins - don't think I could handle it.

    That's why I'm looking forward to Forgotten Plague and Canary in a Coalmine - I think they'll be much more hopeful and I think that they'll get a much wider audience, for that reason. I think the story has evolved since Voices from the Shadows, in that we've now got some very big hitters from the biomedical world involved and research is snowballing - which gives a very different narrative.
     
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  11. SickOfSickness

    SickOfSickness Senior Member

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    Thanks. I'm not sure about handling it either, actually.
     
    Bob likes this.
  12. Sidereal

    Sidereal Senior Member

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    Watched this today. Wow
     
    Bob likes this.
  13. Sasha

    Sasha Fine, thank you

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    You're braver than I am...
     
  14. Bob

    Bob

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    lol, that's as far as I got too!
     
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  15. Sasha

    Sasha Fine, thank you

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    I think there's a big need for a film that's not too distressing for patients to watch! :cry:
     
    Bob likes this.
  16. Sidereal

    Sidereal Senior Member

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    Kinda hard to do an uplifting feature on this given how shit everything is. In this movie Dr Speight said that his impression is that things are getting worse clinically for patients, presumably he meant in the UK.
     
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  17. Bob

    Bob

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    Yes, you're spot-on that it's hard to do an uplifting feature about the reality of our lives, especially if the film is to be a hard-hitting reflection of reality. But, as sasha says, the next films should be more positive because they also focus on the latest scientific developments.

    I think there are some distant glimmers of hope for the UK situation, in the long-term, as there seems to be a slow shift towards accepting that ME is a real and neglected illness that deserves a biomedical approach to research and treatment. But unfortunately this hasn't translated into clinical insight or practicalities yet. Ignorance abounds within the NHS. There is zero treatment available for ME and there are no facilities for severely affected patients in the UK. If severely affected patients need in-patient care, they are only offered psychiatric wards and psychiatric interventions (and therefore disbelief), as far as I can see. The situation is diabolical in the extreme.
     
    Last edited: Jun 14, 2015
    Sasha likes this.
  18. Sasha

    Sasha Fine, thank you

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    But I think Forgotten Plague is managing it (isn't it, @Gingergrrl? You've seen the preview!).
     
  19. Sidereal

    Sidereal Senior Member

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    Right, this movie is about medical abuse and neglect of PWME, those severely and very severely affected. The upcoming movies seem to also have the goal of awareness raising about the scientific standing of ME.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Will try to read this whole thread later so I understand what you are asking me but I did see the full movie of "Forgotten Plague" (pre-edited version) and it was wonderfully done but sad of course! Many parts had me in tears.
     
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