Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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"Unrest" updates

Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2017.

  1. slysaint

    slysaint Senior Member

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    Nice piece By Amanda Jane Barbour 5 Sep 2017

    "I write fatigue in inverted commas because, as Brea says of the illness, “It’s a totally, categorically, different thing. If you’re exhausted, as a healthy person, you rest and then you feel better. We’re not actually resting, we’re sick. It doesn’t make you feel better."

    http://www.sbs.com.au/movies/articl...xplores-hidden-world-chronic-fatigue-syndrome
     
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  2. Joh

    Joh Inactivist

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    From the review @slysaint mentioned:
    I love the ghost comparison and the word "disconnected" fits perfectly! I've never thought of the word "ghost" before, but that's exactly how I've felt the past 15 years. I lived in Berlin, this vibrant, exciting city and when I walked to the supermarket (the only possible effort for that day), I saw all the people sitting in cafes and bars etc while I just had to go back to bed as soon as possible and couldn't stop to enjoy the atmosphere. Had to watch the others live and they didn't even realized I was there as I was needing my energy to make it to the supermarket and couldn't look up or smile at someone or stop to small talk. And when I had to talk to someone it felt very "disconnected" because I was too exhausted, more like a roboter giving automatic, hopefully appropriate answers and not like me expressing my feelings/views or enjoying a good joke/chat/discussion.

    Or when I tried to work for the last time (lasted 4 month until complete crash) I stood at the busy Berlin bus stops after work, holding back tears from pain and exhaustion, sometimes having to sit down on the sidewalk to take breaks to make it to the bus stop at all, while the people around me were planning their summer evenings. It felt very ghost-like and lonely (didn't even have a diagnosis for 14 years, so no community).

    Life is there, within reach, you can see and hear and smell and remember and long for it but you just can't take part, like a ghost that is separated from the living.

    Like this one, too, I certainly feel like a skeleton (on the inside, on the outside is some un-skeleton ME-extra-weight ;)):
    Sorry, I shouldn't make this about me, this thread is about the reviews. :) These parts just really resonated with me and I'm still processing the past 15 years after finally receiving a diagnosis.
     
    Last edited: Sep 8, 2017
  3. mango

    mango Senior Member

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    @Joh So bittersweet, beautifully expressed :hug:
     
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  4. Cort

    Cort Phoenix Rising Founder

    Last edited by a moderator: Sep 9, 2017
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  5. Joh

    Joh Inactivist

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    These are the US theatrical releases this month alone. I'm still completely amazed that a movie about ME will be in cinemas. A movie with Ron Davis talking about ME in it!

    And the theatrical releases will lead to more media reports. The reviews I read so far are among the best pieces about ME I know - in mainstream media, from journalists who didn't know anything about ME before. And Jen's interviews in tv, radio and print were brilliant. I'm so grateful.

    The #timeforunrest campaign has just started this month, so I'm sure that's only the beginning and a lot more is going to happen.
     
    Jenny TipsforME, ahimsa, Jan and 4 others like this.
  6. Cort

    Cort Phoenix Rising Founder

    That is so cool. Thanks so much for posting that :) I will use it in a blog
     
    Joh likes this.
  7. *GG*

    *GG* Senior Member

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    Anything in New England? Smaller markets as well?!

    GG
     
  8. Joh

    Joh Inactivist

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    Screenings are listet on Unrest website: http://see.unrest.film/showtimes/
    But list gets updated all the time, so not complete, more cities to follow.
     
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  9. slysaint

    slysaint Senior Member

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    Even more unbelievable "“Unrest” will open in theatres in the U.K. on October 20." !!
     
    Last edited: Sep 9, 2017
  10. Joh

    Joh Inactivist

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    Unrest will be on PBS's Independent Lens (US TV) on January 8th, 2018! :balloons:

    Whatever people think about the movie itself, I believe in terms of "maximal visibility" (that was discussed in some threads) there is nothing left to wish for: International filmfestivals, theatrical releases in US and UK, availability on iTunes, TV in US and community screenings around the world, each accompanied by media reports. In addition the campaign involves screening Unrest at medical schools, research labs, foundations, halls of government etc. around the world. So far it has subtitles in French, Spanish and German.
    And at specific points in time calls to action like e.g. a petition and "grassroot mobilization" (not sure what this will contain) are planned.

    (Edited to add: In addition to the movie they also created a virtual reality project that helps healthy people to experience living with ME.)

    This is all so crazy professional, I'm still amazed by this achievement that started with a bedbound pwme with an iphone camera.

    Yay! UK will be the only European country for a theatrical release as far as I know, but more awareness in the UK will also spread to the rest of us - the NICE guidelines are for example the main reference for the German guidelines.
     
    Last edited: Sep 13, 2017
  11. Joh

    Joh Inactivist

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    :globe: So far the Unrest trailer has subtitles in:
    English, English (closed captions for hard of hearing/deaf people), French, German, Danish, Norwegian, Dutch, Turkish, Spanish, Spanish (Latin America), Polish
    In progress: Greek (Anybody interested in proofreading?)

    More translations are welcome! :hug: I could send you the link if you're interested.


    In case you didn't see it. The Unrest trailer was first on Youtube and volunteers from different countries had added subtitles. Then the lawyers of the comedian (RG) who is shown making jokes about us, shut the video down. The trailer that was on the Unrest homepage and had already been shared on movie sites, social media etc didn't work anymore (and our subtitle work was lost).

    Apparently the Unrest team was pressured to cut out the scene. Instead they decided to move the trailer to Vimeo and kept the scene. (I'm so glad! It's a powerful scene to show what we're up against.) Volunteers translated the subtitles again (they are not saved on Youtube if video is deleted). People asked if they should twitter RG about it but we were asked not to. It's unclear for me if he also tries to do something about the movie.
     
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  12. slysaint

    slysaint Senior Member

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    also featured on this Youtube video
     
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  13. Hutan

    Hutan Senior Member

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    That's a very moving video.
     
  14. Joh

    Joh Inactivist

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    Jen Brea on when she decided to make a movie. I can very much relate to this sentence (especially at the moment because my parents want me to move out and I simply can't do it physically): "I realized that, no matter what happened or how bad I got, there was no safe space for me to go where I could be treated and understood, treated with respect".
     
  15. Joh

    Joh Inactivist

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    Caregiver theme:
     
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  16. Barry53

    Barry53 Senior Member

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  17. Barry53

    Barry53 Senior Member

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    But in a real way your words about you, are also about Jennifer Brea's huge contribution. The very fact she has managed to express in ordinary but evocative words, what you as a sufferer have struggled to express all these years, shows how very good she is at getting these things across. I don't have ME, my wife does, and I am very aware how hard it is for non-sufferers to sense what it is really like. Non-sufferers with no real buy in will think they understand but actually believe a load of old tosh. Unrest just might help the innocently uninformed to realise they need to develop a conscience about ME, and hopefully begin to understand it a lot better.
     
    Last edited: Sep 15, 2017 at 3:56 AM
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  18. Joh

    Joh Inactivist

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    Sold out screening in Washington DC.
    Great quote from a young woman with ME in the audience who tries to go to college:
    Bildschirmfoto 2017-09-19 um 10.39.53.png https://www.instagram.com/p/BZASw58FAW6/
     
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  19. Joh

    Joh Inactivist

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  20. Joh

    Joh Inactivist

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