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Canary in a Coal Mine becomes 'Unrest'

Discussion in 'General ME/CFS News' started by Kati, Nov 29, 2016.

  1. Kati

    Kati Patient in training

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    From Jennifer Brea on Facebook:

    We have some big news I want to share: we’re officially changing the name of "Canary in a Coal Mine" to "Unrest." Over the last three years, I’ve grown very attached to the name Canary, but it needed to change and I want to tell you why.

    First, one of the defining challenges of this illness has been the horrible name, Chronic Fatigue Syndrome. Doctors, media, coworkers and even loved ones misinterpret us as just being tired, and often even accuse seriously ill patients of being lazy.

    The truth is, patients who have been bedridden for years are not tired or lazy or ‘resting’; they are in a constant state of fighting just to be alive. Whether you are mild or severe, you know how hard it can be to push through, day in and day out. Even when we might look like we’re resting, it’s a fight. I wanted a name that represented that struggle. Unrest describes the experience of all of us who are constantly resisting both the limits of our bodies and the larger social stigmas that have held back equal access to treatment and care.

    Second, one of the most exciting developments over the last year has been the rise of a global movement of patients and allies coming together to fight for health equality. The folks drawing attention to the #MillionsMissing are also engaged in a form of unrest. We are attempting to disrupt the status quo that consigns desperately sick people to the margins of medicine and society. Coming together, engaging in collective “unrest” – I wanted to capture some of that spirit in the title, too.

    Finally, Unrest represents the hope we all share: that with a real investment in this disease, we can discover the root causes and develop treatments. Then maybe someday we can “un-rest” and get back to our lives.

    In 2013, the midst of our Kickstarter campaign, one patient said, “It’s an uprising from our beds.” I’ve returned to that phrase again and again when thinking about how this film might do good in the world. I want people outside of our circles of ME patients, friends and family to see how we, people with so little to spare, are coming together, loving and supporting each other and challenging some of the biggest forces in society. Whether in bed, at work, or outside of government offices, we are in a state of unrest for our health and for justice.

    http://unrest.film
    http://twitter.com/unrestfilm
    http://fb.com/unrestfilm
     
    Last edited: Nov 29, 2016
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  2. taniaaust1

    taniaaust1 Senior Member

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    I'm sad that Jennifer Brea is going to change this as it makes ME/CFS once again in the eyes of the public appear to be about just fatigue by the term "unrest". She may have all these ideas why its good to use this term as she explained but will the general public understand this in the way she meant (or even read what is meant by this term). I personally doubt they will understand it in same way. I'm certain they wont.

    General public do understand though what Canaries in Coalmines though mean and that term never pushed at all the idea that this illness is about fatigue. (I'm really disliking this "unrest" thing as I think it will not help our advocacy at all and I believe it will work against it.. by reinforcing the idea to the public that we are just tired.. unrest (ed).

    Sorry Jennifer.. but I think this is a terrible idea.

    The word unrest makes me think of someone just needing to destress and just get a few good nights sleep to be feeling a bit better.

    I'm a canary in a coalmine.. sensitive to so many things.. I need to watch what I eat, what chemicals I'm around or I'll collapse like a that canary and I'm sensitive as we all are to exercise. The normal world/life is like a coal mine to me as it is to a canary. General public can understand canaries/coalmine with getting ill with no big associations to fatigue.

    Please think long and hard before you go to using the "unrest" term rather then the other of what that term will imply to the general public.

    I don't understand from that explanation why it needed to be changed, there was nothing at all wrong with the canary in the coal mine term to refer to us. ***sighs** not looking forward to anyone refering to us as being "unrested" people as believe what will happen if the term "unrest" starts being used with ME/CFS. The truth is that we feel more like we are being "poisoned" with something.

    Id feel highly offended if someone refered to me as just being an unrested person. I'm not unrested, I'm really ill (my head feels so sore right now its killing me right now, I feel unwell and beat up). The term unrest doesn't resonate one bit to how I'm feeling right now.

    We need to get away from words which make this illness sound like fatigue.
     
    Last edited: Nov 29, 2016
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  3. Kati

    Kati Patient in training

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    'Unrest' takes on a very political dimension. Jen is the maker of this film and she knows what is best for the film and for maximum impact.

    I know nothing about film making, but as you put the parts together, as you write the script, you figure out what is the salient message that needs to be conveyed. I think she is headed towards public education and social change but that is only my best guess.

    Unrest describes perfectly what is going on for all of us.
     
    Last edited: Nov 29, 2016
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  4. viggster

    viggster Senior Member

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    It's hard to come up with a good title, but I think Jen found one. I was always worried that "Canary in a Coal Mine" was a) a cliche, and b) would make people think our illness somehow represented a bigger problem. It might, but I don't think the film is exploring that aspect, so that title wasn't going to work very well. My dos centavos.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    I wonder if she's done any testing at all to see how general public responds to that word eg say the word and use word association to see what other words people associate the word too esp when Chronic fatigue syndrome also is coming into the same association which could give words a bit of a different twist then if they were thought with something else.

    Often people don't know the true impact of something till its put out there and see how it goes. Unless she's done something like a test eg focus group with the word, she can only guess what kind of impact a word may have both on those who have ME/CFS and on the general public.

    We've seen that in the past where people have assumed something will be well taken only to then later find out it wasn't or it did more harm (this has happened multiple times around ME/CFS terms or words).

    I hope that name will be helpful with the film, I just fear it wont be.
     
    Last edited: Nov 29, 2016
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  6. Kati

    Kati Patient in training

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    Tania, I am very sure she thought about it carefully. She has lots of advisers (Sundance, etc) who are walking the walk with her.

    The comments from the Canary in a Coal Mine Facebook page are for the most part congratulatory, but there are some who don't embrace it. It remains that it is her film, her hard work, her choice. She gets to decide where she is going with it.
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    nods yes of cause and she will also be taking the rap if her terms used become some kind of fad by the psych community out there who likes to twist everything and make our illness sound more about fatigue. (Though far fetched, I can imagine some article coming from the psych proponents using the term "unrested" saying our own community uses this term to discribe and then using it as some kind of weird evidence for their CBT being helpful... eg we can just fix their sleep with CBT).

    If ME people don't like the term it could also mean they don't go euthastically recommending the film so much. So yes its her film and her choice but simply what its called could affect things and her advocacy efforts and people here are allowed to give their opinons on how they feel about things and obviously I just sit on the other side of the fence to how you feel about the name. I'm sure some will like it while others may be not like it at all.

    This is all my own opinions but I'm sure if I'm thinking this way there will be others out there who don't like the title too cause of how it could be taken. I myself are very sensitive to anything which could used to represent our illness in a fatigue type way.
     
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  8. Old Bones

    Old Bones Senior Member

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    @Kati For me (a non-Facebook user), all three of the above links end up on the same generic Facebook sign-in screen which states:

    "You followed a link on facebook.com that redirects to another website: http://unrest.film/
    Remember, only follow links from sources that you trust.-- at least on my computer."


    They don't "redirect" to the "Unrest" film website -- at least not on my antiquated computer. Since many of us aren't on Facebook, is there a way to change the first link to get us to the film site?
     
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  9. Kati

    Kati Patient in training

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    I will try to retype them manually. I understand this can happen but since I am a facebook user, it is not a problem to me if you know what I mean. I simply copied and pasted

    @Old Bones I changed the links, can you please let me know if the links work for you?
     
  10. Kati

    Kati Patient in training

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    @taniaaust1 yes absolutely, we are all entitled to our opinions.

    Remember that Jen is also a patient whose life has been significantly altered by the disease and she knows it is not fatigue. Her film is likely to show many views and experiences of the illness including her own experience. No one agrees to everything when it comes to this illness, and I may not agree with every single things that will be said in this film. However if this film takes us further down the road in terms of awareness and social change I think we will be one giant step further and I will be ok with some details not entirely representing my experience, because that would be a difficult thing to do.
     
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  11. Nielk

    Nielk

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    Unrest definition, lack of rest; a restless, troubled , or uneasy state; disquiet: the unrest within himself.

    I'm very disappointed that this was Brea's pick for new name of the documentary. It's her documentary and her decision but this is not what was conveyed when she raised funds from this community to start the documentary.

    She said this documentary was going to be about ME - not Fatigue and she showed a clip with her crawling on the floor - unable to walk.

    I don't think that this title is a good choice.
     
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  12. Sea

    Sea Senior Member

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    I think it's a brilliant name, and I can't see how that makes it about fatigue at all.

    I'm probably focussing more on the advocacy side where I see unrest as an indicator that there's going to be an uprising. It feels like that is where we're headed now that PACE has been exposed and more biological research is giving results
     
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  13. rosie26

    rosie26 Senior Member

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    I'm pleased with the name change. I never liked the film title "Canary in the Coal Mine".

    I like it, @Nielk Thanks for the definition. That really fits with the hellish physical symptoms of my illness and the trauma and disquiet within and the endless passing years without anwsers, help. I cannot rest or have peace with this illness until answers are found and treatment started.

    The title will give a side to this illness experienced (the unrest inside trying to deal with such a serious illness without appropriate medical help, understanding and so much more).
     
  14. barbc56

    barbc56 Senior Member

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    It's absolutely Jan's choice to decide the name of the film. It's her work.

    However, think of how the me/cfs community would react if EC et al, used the word unrest to describe our illness. IMO, the word unrest implies that the cure is rest as in "I didn't get enough sleep last night so I need to rest" vs. the rest needed by patients in the context of PEM.

    Those who don't understand what me/cfs is and the issues surrounding this disease might think of the word as fitting the former and not the latter definition.
     
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  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I am afraid many peoples' reactions will be:
    get more sleep
    sit down, relax, take some deep breaths. If that doesn't help, maybe you should see a psychologist.
    see above
    see above
     
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  16. Navid

    Navid Senior Member

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    I'm surmising that by posting this here we are free to give our opinions. I think Unrest is a TERRIBLE title choice.

    Obviously her choice; however immediate connection in my brain when seeing this as a title is it's a movie about people who feel unrested and need more rest in order to feel better. I personally think it is a terrible name given the historical (and current) belief that this is a disease about fatigue and just needing rest to get better.

    The fact that the title needs so much explanation to define what it means is proof of this.

    I personally do not understand this: "Unrest describes the experience of all of us who are constantly resisting both the limits of our bodies and the larger social stigmas that have held back equal access to treatment and care." What she is describing in that quote is distress not unrest.

    Too bad this new title will probably only work to further cement that this is a condition of mental and physical fatigue and patients just needed to rest....to recover from their feelings of unrest.
     
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  17. roller

    roller wiggle jiggle

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    drained & pained
     
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  18. BurnA

    BurnA Senior Member

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    I doubt it matters much what the title is.

    It's important people actually see the movie and judge it then.

    To put it in perspective, a celebrity endorsement would probably be worth a lot more than anything else. The film could be called "awful movie" and if the right celebrity said it was good, millions of people would watch it.
     
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  19. Forbin

    Forbin Senior Member

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    "Unrest".... hmmm....

    :)
     
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  20. Chrisb

    Chrisb Senior Member

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    It's an interesting conundrum. "Unrest" seems to properly capture the political and social aspects of the ant-medical- establishment feelings which drive the anger which is felt. It doesn't quite do justice to the description of the condition. But those who first used the term dis-ease were probably regarded with equal suspicion.
     
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