Jen Brea tweets about U.K. Unrest campaign

I think we all agree that it's a real shame to see a small independent film be victim of piracy, particularly as the result of what seems like a deliberately vindictive campaign. However, I do wish that some of the language used wouldn't imply that it's all the UK's fault. Maybe I'm more sensitive due to Jen's words recently re: British healthcare, but the fact that several other members feel the same clearly means there's something in it.

I'm also a bit put out that we're only now learning about this group of people and the financial knock-on effect of piracy, though this can't be helped. I am sure that those in the UK and beyond would've gladly put in some cash for a fundraiser to keep outreach and screenings going in the UK for a couple more months. Ah well.
 
This thread makes me uncomfortable; especially in the light of there being another thread about things Jen has said in tweets. The cumulative effect is not something I would want to experience, and it's unfortunate it's about a fellow pwme.

edit - brevity
 
It makes me uncomfortable too, in the sense that it is the cumulative effect of several people, including myself, expressing discomfort at some tweets.

For me it's the medium of twitter that is the problem, not Jen herself, and I hope she can see it that way.

No one has expressed any criticism of, or anything but gratitude for, Jen's undoubted efforts and achievements.

The problem is the chopped up nature of tweets and the misunderstandings this can lead to. My solution is to remove myself from Twitter. Others will find their own way forward.
 
Trish said:
It makes me uncomfortable too, in the sense that it is the cumulative effect of several people, including myself, expressing discomfort at some tweets.

For me it's the medium of twitter that is the problem, not Jen herself, and I hope she can see it that way.

No one has expressed any criticism of, or anything but gratitude for, Jen's undoubted efforts and achievements.

The problem is the chopped up nature of tweets and the misunderstandings this can lead to. My solution is to remove myself from Twitter. Others will find their own way forward.
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Mine is to,avoid it at all costs and change my career so I don’t have to work on social media campaigns
 
Dr Carrot said:
I'm also a bit put out that we're only now learning about this group of people and the financial knock-on effect of piracy, though this can't be helped. I am sure that those in the UK and beyond would've gladly put in some cash for a fundraiser to keep outreach and screenings going in the UK for a couple more months. Ah well.
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Piracy has been around since before the Internet, and just about anything can be pirated.

Normally there is nothing to gain from piracy, but in the case of Unrest, the film's message is still getting out. Everyone that watches the film furthers that effort. While it is a shame that direct Unrest outreach is financially impacted in the U.K., it is still possible for grassroots efforts to carry on that task.

Unrest carries a powerful message which is a testament to the suffering of us all.
 
I feel Jen has been over criticized in two public threads. I feel this can leave a very negative impression about how S4ME treats a PwME Advocate, with ME, who uses a wheelchair, and spends a lot of time in bed. I hoped we could support Jen, who has done so much to bring global ME awareness.

Is this too much to ask?
 
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Much though I agree with you re: broader support, I think much of the discussion here has been along the lines of people feeling like they (pwme in the U.K.) had been criticised.

Just because some people disagreed with some words that were said doesn’t mean that they are not broadly supportive of the efforts of Jen and any other public advocate. I am sure that the vast majority of S4ME users recognise the fantastic strides forward created by Jen, Unrest, and ME Action.

But to your point about being supportive - I’m bedbound, but if I say something that upsets someone else, or if they disagree with me, that shouldn’t be used as an excuse for that person to remain silent. I hardly think that any of the criticism here has veered towards bullying.
 
MErmaid said:
I feel Jen has been over criticized in two public threads. I feel this can leave a very negative impression about how S4ME treats a PwME Advocate, with ME, who uses a wheelchair, and spends a lot of time in bed. I hoped we could support Jen, who has done so much to bring global ME awareness.
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Hear! Hear! Well said!
 
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The thread is now open again.
There have been a significant number of rule breaches on this thread.

If you are considering posting:

Please be sure that you are making a relevant, new and useful point and that you are treating others as you would want to be treated.
 
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Jennifer Brea said:
@jenbrea Mar 27
A friend of a UK patient pirated the film and enthusiastically shared it everywhere and keeps posting it on YouTube.

I spent two weeks in the UK promoting the film, half of it bedridden alone in a foreign country in my hotel room. Flew back to LA and as soon as I arrived, received a message that the film had been pirated and viewed thousands of times.

Mostly it was upsetting because the person doing it is really aggressive and thinks he's doing good by stealing a film that "was made for the wrong reasons" but mostly I see an able-bodied outsider kicking a disabled filmmaker in the face.

There's nothing to do but again, I just feel bad for UK patients. I wish we could have done more work there. The only thing that could make up the shortfall would be some kind of philanthropic support.

That may be coming – I really hope we can accredit the film for continuing medical education and do real outreach to the UK medical community, as we are doing here.
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Some compiled tweets from Jennifer Brea that I think paint a better picture. I was in the dark about some of these details.
 
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Melanie said:
Too bad that none of us saw this sooner. We could have reported to Jen and she could have had it taken down then. It has just been taken down so I am thinking she just saw this.
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Multiple torrents of the film are available online. It took me a second to find it just now. Unfortunately it's just about impossible to stop people from doing this.
 
TrixieStix said:
Multiple torrents of the film are available online. It took me a second to find it just now. Unfortunately it's just about impossible to stop people from doing this.
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It's really difficult these days because all movies get pirated and placed on many different torrent sites as soon as they hit the internet legally. The big movie companies lose millions, the indies often can't survive because of it. For somebody connected to the ME community to purposefully cause Unrest to lose money because they don't like Jen or the movie is worse than a total stranger doing it to make a few extra bucks from advertising. It's very personal. I can see why she is so upset.

Once in a while, ISP's will contact a person and tell them to stop downloading stuff illegally but don't go any further than that. With the use of VPN's, it's pretty easy never to get caught. It's really too bad that Youtube isn't more vigilant.
 
TrixieStix said:
Multiple torrents of the film are available online. It took me a second to find it just now. Unfortunately it's just about impossible to stop people from doing this.
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Personally I would avoid using torrent etc. I've always worried that it is a route for hackers to spread malware (although no evidence of this!).

I believe youtube are quite quick to take down copyrighted material when someone contacted by someone but I suspect they only police things for the big studios. They should be looking to ban people who constantly download copyrighted material but I doubt if they do.
 
I am grateful to Jen and everyone who contributed to the film for all their hard work. Someone deliberately putting Unrest up for others to copy just because they thought it should be free was wrong.

My views on the twitter storm have already been covered by others in the thread.

However, one point I would like to make is that we don't know what happened after people saw the film for free. It is possible that some of them went on to purchase it, realizing that in doing so they would support Jen's advocacy.

Possibly, having watched the film, they donated directly to #MEAction to support in that way?

Maybe, having seen the film, they will donate to one of the May events?

The piracy was absolutely wrong, but we can't know that those who downloaded a piratepirated copy haven't, or won't put their hands in their pockets just because they saw it for free.

Edited - said bought instead of watched.
 
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Jen Brea continues to get criticism on Twitter.
To me, it seems reasonable for her to raise the issue that piracy and watching the documentary for free could very plausibly have had negative consequences on the amount that would be raised and hence available for the campaign.

There is a possibility she could have said it better but it is hard to write nuanced comments on Twitter.
 
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