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How to get 'Voices from the Shadows' viewed by more people

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Jun 7, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    With the scheduling of the debate in Westminster hall in June and the ongoing NICE guidelines review I wondered if there was any way to mount a campaign to get this 30min version of
    'Voices from the Shadows' (which clearly illustrates what has being going on in the UK particularly with regards the severely affected and children) viewed by as many people as possible in the next couple of weeks?.

    http://voicesfromtheshadowsfilm.co.uk/

    @Gary Burgess @Russell Fleming @JaimeS @Nasim Marie Jafry @Emsho

    eta: they are on FB https://en-gb.facebook.com/VoicesfromtheShadows/
    eta2: by 'people' I don't mean pwME but the general public, politicians and the medical profession
     
    Last edited: Jun 10, 2018
  2. Bill

    Bill Senior Member (Voting Rights)

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    In the "separated by a common language department," I would note that in American English "tabling" chiefly refers to delaying or postponing an action or taking something off the table.

    Where in British English the meaning is almost exactly the opposite.

    To avoid confusion, the Westminster Debate is definitely scheduled for Thursday, 21st June, 1:30-4:30 p.m.

    Play on.

    Bill (a momentarily confused American)
     
    Last edited: Jun 8, 2018
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  3. JaimeS

    JaimeS Senior Member (Voting Rights)

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    I've passed this on to #MEAction UK -- they may have some ideas! I'll think on this as well.
     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    have amended my post.........but it is definitely scheduled.
     
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  5. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Thanks @Sly Saint. I'll have a look and share accordingly. Appreciate you flagging it up, and great that the debate is happening, too.
     
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    I wonder if the Voices team have ever considered doing a short version for the purposes of advocating to busy people in positions of power who wouldn't watch a 30-min video?

    I must admit that I've never watched VftS, and I've seen quite a few patients say that they haven't - I recall it being very bleak and distressing, and I wonder if a smaller dose would be actually be more effective.
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    I have not watched either, though i should. I do know that it has had effect when forwarded by Tymes Trust to doubting educational staff.
     
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  8. Trish

    Trish Moderator Staff Member

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    I finally made myself watch the half hour version of Voices from the Shadows yesterday. It is a very powerful and compelling film and I think should be seen by every paediatrician and every doctor and therapist involved in treating ME patients in the UK. It has a good balance of heart rending personal stories and input from experts. When I get around to writing to my MP to ask him to attend the debate (next on my to do list) I will urge him to watch it.
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This is what I'm talking about; after seeing @Emsho s testimony I felt compelled to watch VftS again before I started this thread. It is particularly relevant given the recent news about Merryn Crofts. Two of the patients (Lyn Gilderdale and Sophia Mirza) are no longer with us. MPs who have seen Unrest probably see the bit about Per Fink and Karina and think 'that's terrible' but cannot conceive the thought that it could possibly be happening here.

    When at the Scottish Parliament they asked why ME hadnt been taken seriously/researched that was the time to lay it on the line like Nigel Speight does at the end of the VftS (30min version)

    "If this condition hadn't been hijacked by psychiatry for thirty to forty years it [the medical profession] would have found the cause of it by now".

    eta: this would be a good time to use the #Justice4ME for those on twitter
     
    Last edited: Jun 10, 2018
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    #Justice4ME
     
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  11. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    FWIW, all the people in my online support group watched it and we all had really bad responses to it. It’s a terribly bleak film, and one that I think should come with a disclaimer for any M.E. patients who are feeling remotely fragile at the time of viewing.
     
  12. Trish

    Trish Moderator Staff Member

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    I agree - it should definitely be aimed towards medical staff and therapists, not pwme, and should always be accompanied by a warning.
     
  13. Graham

    Graham Senior Member (Voting Rights)

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    Yes, it is very bleak, but very real. I liked the Unrest film, but it was the glossy Hollywood take - necessary to get the picture across, but centered on an intelligent, well-off, well-connected presentable young woman. Voices from the Shadows is reality for sadly so many folk with ME. I saw it quite a while ago, and rather than have a bad response, it made my deep anger burn even more fiercely, and made me more determined than ever to fight PACE.
     
  14. Guest 102

    Guest 102 Guest

    Hey, Am not on here much, just saw the request, I have tweeted Carol Monaghan suggesting she might watch the extract before 21 June.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I did the same!(via email) and asked her to circulate as she saw fit.
     
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  16. Guest 102

    Guest 102 Guest

    'Voices' is simply devastating. I looked up my thoughts from when I watched it 4 years ago: I love - the wonderful- Dr Nigel Speight's comment about a 'sort of new Stalinism coming into British medicine'.
     
    Last edited by a moderator: Jun 11, 2018
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. Sasha

    Sasha Senior Member (Voting Rights)

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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    article is from 2012:

    "
    Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media. The picture has not been good.

    Here is what I have previously understood about M.E. and those who have it.

    M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.
    Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.
    Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude.

    That, generally, is what I thought about M.E.

    Until, that is, a reader sent me a DVD of a British-made film about the illness titled 'Voices From The Shadows'.

    One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E. "
     
    Last edited: Jul 1, 2018
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    glad to see this being mentioned more:


    thanks @JenB
     

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