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"Unrest" updates

Messages
2,125
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
 

Hajnalka

Senior Member
Messages
910
Location
Germany
From the review @slysaint mentioned:
“It’s an illness that essentially removes your ability to have effort,” Brea says. I often feel like a ghost hovering through a car crash; I can hear the sounds and see the images, but I’m disconnected from that world by “fatigue”.
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 ;)):
ME creates a skeleton out of what you once were, and your ability to survive depends on your capacity to make peace with that skeleton. I mean survive in very literal terms– as the film points out, the leading cause of death for people living with ME is suicide.

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.
 
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Cort

Phoenix Rising Founder
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Hajnalka

Senior Member
Messages
910
Location
Germany
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.
 

Cort

Phoenix Rising Founder
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.
That is so cool. Thanks so much for posting that :) I will use it in a blog
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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.

Anything in New England? Smaller markets as well?!

GG
 

Hajnalka

Senior Member
Messages
910
Location
Germany
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.

Even more unbelievable "“Unrest” will open in theaters in the U.K. on October 20." !!
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.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
: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.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
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".
 
Messages
2,391
Location
UK
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.
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.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
Sold out screening in Washington DC.
Great quote from a young woman with ME in the audience who tries to go to college:
When I obey my body, I feel like I am betraying my dreams and when I follow my dreams, I betray my body.
Bildschirmfoto 2017-09-19 um 10.39.53.png
https://www.instagram.com/p/BZASw58FAW6/