Jen Brea tweets about U.K. Unrest campaign

Dolphin said:
For anyone who missed it, Jen has posted a long thread of posts under the initial post on Twitter, including answering some people's questions:
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Thanks! I read all of the posts :emoji_bird:

To add, Jen was at Harvard getting her PhD in Political Science, and was also doing a Master’s in Statistics, when she got sick. So I feel, between her education and access to people in the film industry, she is more than qualified to use Twitter to report out the funds lost due to the piracy of Unrest in the U.K.
 
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Thats sad to hear, but i assume Youtube has some algorithm to remove copyrighted works, they seem to be able to do it for mainstream customers. If they know who it is i assume charges are possible, or at least a nice talking to by the Police. I have wondered if Netflix pays any royalties, probably small if any but is there any paid?
Finally getting it turned into a CMU or medical schools is a brilliant idea, i wish we could crowd fund it
 
Alvin said:
I assume she owns or directs the organization that owns the copyright, i assume she can press charges or get the authorities in the person's jurisdiction involved? Not a nice thing to have to do but if someone insists on screwing over your copyright...
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I have no idea what the outcome was to this? But I do know that legal fees could easily cost more than the reported damage incurred.

It’s a sad loss for the U.K.
 
I think this experience Jen Brea has had with Unrest in the UK is deeply disturbing and may make it harder to bring US activism & insights to bear: ME Action is strong on community organising, is proving efffective in the US & I think vital to culture change here too.

Is there any way members of this forum could publicly ie on Twitter, Facebook & elsewhere speak out against piracy and other tactics sabotaging Unrest & following campaign? And specifically should we in the U.K. crowdfund to support ME Action in a medical school education programme like that happening now in the US?

I do wonder if the bitterness of the US experience of U.K. needs now to be met with a countering experience of generosity & support?
 
If it was one person breaking copyright to put it up on You Tube, then it is right to blame that person. And blame You Tube for not taking it down quickly.

I am uncomfortable with the implied condemnation of a whole nation on the basis of one person's wrong action. I suspect a lot of people who watched the pirated version in the UK were unaware it was pirated.

My limited sample for this comment is a family member and a couple of friends who told me it was now available free on YouTube, honestly not realising it was pirated. I had a look but didn't watch much of it, and only later heard it was pirated.

I later bought the DVD and watched it.

I am of course sorry to hear it was pirated, and losses incurred, and would support fund raising for more medical education based around the film. But let's do that as a positive act, not laced with a heavy dose of blame on a whole nation.
 
I hope @JenB can explain in a bit more detail here what the conclusions are based on.

I would have expected there to be cultural and technological differences between UK and US, which could account for some of the difference in figures.

Also, was the impact of the piracy only limited to the UK?

I wonder what other countries figures are like? Would be interesting to know if they are all pro rata proportional to the no. of names on the Unrest database.
 
Sadly, piracy is part and parcel of creative life. I've worked in publishing and it happens a lot. You just have to accept that it's beyond your control, to a degree, report instances that you find, and get on with life. It's not nice, but it's way too easy for people to share anything digital these days, so you couldn't stop it even if you tried.
 
Trish said:
If it was one person breaking copyright to put it up on You Tube, then it is right to blame that person. And blame You Tube for not taking it down quickly.

I am uncomfortable with the implied condemnation of a whole nation on the basis of one person's wrong action. I suspect a lot of people who watched the pirated version in the UK were unaware it was pirated.

My limited sample for this comment is a family member and a couple of friends who told me it was now available free on YouTube, honestly not realising it was pirated. I had a look but didn't watch much of it, and only later heard it was pirated.

I later bought the DVD and watched it.

I am of course sorry to hear it was pirated, and losses incurred, and would support fund raising for more medical education based around the film. But let's do that as a positive act, not laced with a heavy dose of blame on a whole nation.
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Agree we need to be positive now.

I do think that a way to do this would be to crowdfund MEAction/MEA led medical education programme. Building on US model and US work - but in U.K. Here working on positive change while others are rightly debunking PACE. Think we need both approaches and the positive education is vital for our futures.
 
RuthT said:
Agree we need to be positive now.

I do think that a way to do this would be to crowdfund MEAction/MEA led medical education programme. Building on US model and US work - but in U.K. Here working on positive change while others are rightly debunking PACE. Think we need both approaches and the positive education is vital for our futures.
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Agreed. We could crowdfund that money pretty easily, I expect.
 
RuthT said:
I do think that a way to do this would be to crowdfund MEAction/MEA led medical education programme. Building on US model and US work - but in U.K. Here working on positive change while others are rightly debunking PACE. Think we need both approaches and the positive education is vital for our futures.
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I don't follow this. We have a huge amount of educational work done by people like the MEA with the purple book. MEA and Biobank and various other organisations have worked hard to disseminate Unrest and provide discussion panels. I cannot see what a single case of pirating has to do with any strategy on education. If we are going to educate in medical schools we need professional medical input so that the message is based on good science. Otherwise it will not be taken seriously. People are working on that right now in the UK.
 
Jonathan Edwards said:
I don't follow this. We have a huge amount of educational work done by people like the MEA with the purple book. MEA and Biobank and various other organisations have worked hard to disseminate Unrest and provide discussion panels. I cannot see what a single case of pirating has to do with any strategy on education. If we are going to educate in medical schools we need professional medical input so that the message is based on good science. Otherwise it will not be taken seriously. People are working on that right now in the UK.
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My point being that while is seems potential funding was lost, why not crowdfund to support & enhance that work by MEA and others in the U.K. ie use what was a bad experience & turn it to good.

Not replace, but build on & seek to sustain forward momentum of the work of MEA and other, building on & interest that Unrest has generated & work of so many including recent articles by Kidlon, Geraghty et al.

Surely funding for that would help?

So one idea would be crowdfunding specifically for medical education & would a donation to MEA and/or ME Action for that purpose be helpful?

So a target of £17,000 (estimated lost revenue) seems lot, but would surely help?
 
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Thank you @Jonathan Edwards. I agree it's vital that efforts to educate doctors and medical students should be done by medical professionals and researchers who have both sound knowledge and credibility. I'm pleased to hear that is happening. Do you have suggestions or ideas of how we could best support that, for example by fundraising for the MEA or other organisations.

Edit to add - Unrest and pwme can play a part in that too by showing and telling the patient experience.
 
Trish said:
Thank you @Jonathan Edwards. I agree it's vital that efforts to educate doctors and medical students should be done by medical professionals and researchers who have both sound knowledge and credibility. I'm pleased to hear that is happening. Do you have suggestions or ideas of how we could best support that, for example by fundraising for the MEA or other organisations.

Edit to add - Unrest and pwme can play a part in that too by showing and telling the patient experience.
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Unfortunately public screenings ( such as at med schools) require a license to screen - c £200
The DVD is also priced at higher end of market ( probably due to distribution costs?) - not everyone has itunes / netflix.
The Youtube generation expect everything to be " for free"....
 
Amw66 said:
Unfortunately public screenings ( such as at med schools) require a license to screen - c £200
The DVD is also priced at higher end of market ( probably due to distribution costs?) - not everyone has itunes / netflix.
The Youtube generation expect everything to be " for free"....
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So could we crowdfund to support MEA visiting medical school with Unrest screening licenses & expenses of Drs eg Dr Shepherd? Could include costs of eg Skype interview with patients. Could also have PACE debunking element.

Absolutely important as @Jonathan Edwards has pointed out to get right science & medical advice. This combination does seem to have worked well when done so far. Can we enable the reach to go further while momentum is growing?
 
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