Unrest available worldwide today on Vimeo and iTunes

Sorry @Wonko that " Unrest" didn't do it for you. Haven't seen it yet so no personal comment. Would your sister not see a bit more of your life from it? Not saying she would- just a question.

-But my tickets arrived this morning ( Crowborough on Sun 12th Nov)
-I will buy a DVD, hopefully to show anyone I think might be interested ( but I will remember your reaction)
-And I am thrilled that it is no 1- on iTunes: does that mean though that I can only watch it on my iPad? I don't have an Apple TV. A technical answer welcome.
 
Wonko said:
It's a good film, but it didn't show the sheer grind, the pain, the frustration, the limitations, the impossibilities, the life.
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I agree. The problem is, the public aren't ready to accept that level of truth. Is that fair? No, not at all, not in the least.

But what you saw as "soft, cute, sanitised", your average member of the public will be shocked by, as they have no appreciation of how different our lives our compared to theirs - and that is true even for mild sufferers. And that itself is part of the issue, the naming (i.e. CFS) and the 'ranking' of severity, you can be 'mild' and have no life other than work and rest, work and rest - how is that mild when compared to a healthy persons life?

I consider myself lucky compared to many, but I'm housebound with the exception of a twice weekly 2 hour class I run. I'm unemployed. I no longer have any proper contact with anybody except those in my class and my online friends. My 78 year old mother-in-law is more active than I am.

But healthies have no comprehension because they don't see us. And Unrest is beginning to show that world to them.
 
Binkie4 said:
Sorry @Wonko that " Unrest" didn't do it for you. Haven't seen it yet so no personal comment. Would your sister not see a bit more of your life from it? Not saying she would- just a question.
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It's a fine film, for pwME and probably those immediately associated with them. The problem, as I see it, is that it says very little to other people, other people that we need to be aware.

Precisely how you could put the content/information/vibe that I expected, based on reviews, into a film, whilst not going too much into the shock, woe is me, effect, and keeping it entertaining, I have no idea - I suspect this was a compromise.

And no, not really, because so much of it was about the effects of ME on family, AFAIK not one person in the film was surviving on their own, I don't see how it could usefully inform my sister, at least not without appearing to be a plea for help, which it wouldn't be.

edit, grammar and some words
 
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@MeSci has just posted on another thread that You and Yours has just had a fairly large section on people with ME getting turned down for benefits.

Perhaps the various approaches to ME, including Unrest, are together beginning to change the direction of perception of our illness in that we seem to be gaining some attention.
 
I certainly hope so, and I appreciate that my perspective is not generally shared, in this case, that my perception of how others will react is sometimes/frequently at variance with reality, as perceived by others.
 
MEMarge said:
Hi @Binkie4 I am going to Crowboro, as I think @Graham is too. I think it will be great to meet up with others as well as seeing the film.
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It would. Any suggestions on identification? A Guardian ripped to shreds under left arm? Oh no, that should probably be in angry thread. Perhaps just.....?? What do you think? Actually I think I had a photo of me as an avatar for a while. You might recognise me.......and me you.

Shall we decide nearer the time?
 
It is available on Amazon Video - £12.99 - I rather hope a rental version becomes available soon.

Does anyone know where the profits are going? eg, straight to the producers, or is there a pledge for charity etc?
 
Skippa said:
Does anyone know where the profits are going? eg, straight to the producers, or is there a pledge for charity etc?
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From a promotional email from Jen Brea:

Not only that – we are reinvesting proceeds from the sale of Unrest back into the Time For Unrest campaign. This will help support our efforts to bring the film to medical schools, policymakers, and research centers around the world. The more people see Unrest, the more outreach we can do, and the bigger the impact the film will have.​
 
Skippa said:
It is available on Amazon Video - £12.99 - I rather hope a rental version becomes available soon.

Does anyone know where the profits are going? eg, straight to the producers, or is there a pledge for charity etc?
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If you can spoof a US IP address then it's available for rent from amazon.com at $5.99.

Given this, here, where I is, is the UK, I'm not expecting to see this option for a while, amazon.co.uk like to rip off the brits. Why would they not take £13 instead of £6 if they can get away with it?

oh - I probably should mention, spoofing US IP's in order to gain access to another markets content might, possibly be against the law, no idea why it should be, but, it might be, it is the sort of thing they generally try and make illegal or terrorism, or something.
 
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Hi @Binkie4 I am going to Crowboro, as I think @Graham is too.
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I'll be there. In fact I'll be doing the "thank you to sponsors" at the start (extremely short) and the "cafe is open, people are around to chat, Q&A in the hall, collecting tub for IiME in the cafe" reminder afterwards.
Be good to see you there! Just look for a head that reflects a lot of light.
 
Andy said:
... what you saw as "soft, cute, sanitised", your average member of the public will be shocked by ...
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Exactly.

For example, my husband and I saw it together. I was expecting to cry but ended up only tearing up a little bit in a few parts.

On the other hand, my husband said he had to close his eyes in several parts. It reminded him too much of all the crap I've gone through. So, even though he already knew how bad this illness can be, and even though I'm more moderate, not severe (I've been housebound in the past but now, although I'm too sick to work, I can leave the house if I'm careful to pace), this film was almost too much for him to take.

I imagine that for the average person the full weight of how bad things are for ME patients is simply too dark. Here's an illness that has had barely any research done for so many years. There's no accepted bio-marker. It affects more people than MS but is mostly unknown. There are folks who have been sick for 30-40 years with no treatment at all (other than palliative, at best). The suicide rate is high.

There are many ME patients who have no family or friends for support. Many ME patients who get turned down for long term disability. Many ME patients who have been ignored and belittled - or worse, abused! (CBT/GET) - by doctors.

So, while it may not have been strong enough for a lot of ME patients, I think it was more than enough to get the message across for the general public.

The fact that a lot of MPs in the UK went to see it (an excerpt, not full movie), and then tweeted about it afterwards, is a good sign for me!

A few tweets:







Just my two cents. I'm pretty clueless when it comes to political strategy, figuring out how things will affect research funding, and so on, but it sure seems like this film is helping things.
 
TiredSam said:
Well seeing as we're fessing up, I'm a little worried I might have a teary moment too. Maybe I'll hide under my cape or something. The last such occasion was when I watched "Still Alice", the scene where she's trying to explain to her husband that her memory is going and he says something like "hey, me too, we all get forgetful now and again" and the wife starts screaming at him that that's not what she's talking about. Well, to the shocked amazement of my wife, I just burst into tears on the sofa. Don't tell anyone :muted:
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Oh God, Still Alice turned me into a complete wreck. I remember her saying something like 'I wish it was cancer so people would take me seriously'. While I've never been suicidal I totally used to relate in my crashier days!
 
Mark Tami, Labour MP for Alyn & Deeside
Jennifer Brea was an active Harvard PhD student when she developed ME, also known as Chronic Fatigue Syndrome (CFS), and she was told at the time that it was all in her head and that there was nothing wrong with her.

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

However the effects of it are devastating, and Jennifer’s story really hits home how difficult life with the disease can be. It is clear that more needs to be done to raise the profile of this debilitating disease. Not enough money is being put into researching, and of the money that is being put in a large proportion is being wasted on psychiatric research about the disease rather than biomedical research.
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http://www.marktami.co.uk/2017/11/this-weeks-column-on-mecfs/
 
Binkie4 said:
It would. Any suggestions on identification? A Guardian ripped to shreds under left arm? Oh no, that should probably be in angry thread. Perhaps just.....?? What do you think? Actually I think I had a photo of me as an avatar for a while. You might recognise me.......and me you.

Shall we decide nearer the time?
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Hi @Binkie4 I'll have a label (stuck on, not Paddington -style) saying Debbie and S4ME.
Sorry not to have replied earlier. I also use a walker.
Should be able to recognise Graham, even without the hat.
 
I felt a bit mixed about the film as a tool for advocacy, but then, I'm often not that interested in personal stories about people's ill health (they all seem so different, so difficult to interpret meaningfully, and so open to misinterpretation). The film seems to argue that ME/CFS should be understood as that which has been traditionally understood as 'hysteria', but that the 'hysteria' label is a misnomer. That's a bit of a risky approach, and not one I'd take. If it weren't for the picking apart of things like PACE, this film could have been useful for Wessely & co imo... but as it is, it seems to be doing a lot of good.

I suspect that the film I'd have wanted to make, with more graphs and discussions of problems with research practices, would not have reached such an audience. There were also things I liked about it as a film that I felt uneasy about in advocacy terms. For a documentary like this to work, it needs to be able to show Jen being unreasonable at times (in reality we all are, and a super-woman character would make the film feel like uninteresting propaganda), but I always feel a fear of the way patients' unreasonable actions can be used to undermine us.

A lot of Jen's experiences of ill-health/medicine were quite different to mine, but there were still bits that hit-home. It painfully reminded me of some difficult experiences in my first few years of ill-health. It felt like a film made by someone who had not been ill for that long, or spent much time really engaging with the details of arguments from Wessely & co supporters - I suspect that this played into a number of things I felt nervous about, but also that it gave it a freshness which helped it gain more widespread appeal.
 
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