Jen Brea tweets about U.K. Unrest campaign

I’m finding the tone also unhelpful on both sides....but I do wonder why Jen is suddenly effing and jeffing all over the place ...it is certainly off brand and I don’t think using twitter to vent ones spleen is a great technique for advocacy in my opinion. however it is twitter and so throw away comments on such trashy media shouldn’t really be taken too seriously.

Jen is free to say fuck to the whole uk...it doesn’t matter to me...I’d rather she said what she thought freely....It’s the equivalent of me saying that the president of the USA is a twitter twat...that’s my opinion...it’s not a reflection on the whole people of the USA.

On the other hand cutting the UNREST campaign short in the UK because of one person seems a bit petty though and the whole diatribe seems a bit toxic and pointless. I’m left a bit disappointed and slightly let down by this mainly because I think she is great and I don’t like to see the UK trashed and left unsupported over what is a tiny amount of money. We have enough problems here without this nonsense.muddying the water. I think Jen needs a press and PR agent to help filter out the trumpesque spleen venting.
 
arewenearlythereyet said:
I’m finding the tone also unhelpful on both sides....but I do wonder why Jen is suddenly effing and jeffing all over the place ...it is certainly off brand and I don’t think using twitter to vent ones spleen is a great technique for advocacy in my opinion. however it is twitter and so throw away comments on such trashy media shouldn’t really be taken too seriously.

Jen is free to say fuck to the whole uk...it doesn’t matter to me...I’d rather she said what she thought freely....It’s the equivalent of me saying that the president of the USA is a twitter twat...that’s my opinion...it’s not a reflection on the whole people of the USA.

On the other hand cutting the UNREST campaign short in the UK because of one person seems a bit petty though and the whole diatribe seems a bit toxic and pointless. I’m left a bit disappointed and slightly let down by this mainly because I think she is great and I don’t like to see the UK trashed and left unsupported over what is a tiny amount of money. We have enough problems here without this nonsense.muddying the water. I think Jen needs a press and PR agent to help filter out the trumpesque spleen venting.
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As to the US president, say what you will.

As to Jen, nothing in what she wrote struck me as telling off the entirety of the UK.

She didn't cut her campaign short to punish a single person, but because the revenues of the film fell short (by her estimation by $18,000) and it wasn't sustainable. She seems angry that one person's efforts to widely pirate the movies hurt her efforts to sustain the Unrest campaign in Britain. Who can blame her for that?

Like pretty much all of us, Jen is living with ME/CFS (which sucks big time) and has to keep up with the demands of promoting the film (and our cause) internationally. That's quite a burden IMO. I'd call for a little grace.

Bill
 
Bill said:
She didn't cut her campaign short to punish a single person, but because the revenues of the film fell short (by her estimation by $18,000) and it wasn't sustainable. She seems angry that one person's efforts to widely pirate the movies hurt her efforts to sustain the Unrest campaign in Britain. Who can blame her for that?
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I think the nature and tone of the tweets were odd, but sone people like to vent on twitter I guess.

The strange thing for me in all this is that there seem to be significantly more UK people interested in Unrest than US people.(edit :in %)
So, on one hand you could say the money is better spent in the US anyway because that seems to be where it's needed. Although on the other hand you could say Unrest got more support from UK so maybe it's justified in promoting it more there.

Either way deciding to abandon UK promotion because of a piracy issue doesn't make sense, I would have preferred a better explanation.
 
Bill said:
As to the US president, say what you will.

As to Jen, nothing in what she wrote struck me as telling off the entirety of the UK. She didn't cut her campaign short to punish a single person, but because the revenues of the film fell short (by her estimation by $18,000) and it wasn't sustainable. She seems angry that one person's efforts to widely pirate the movies hurt her efforts to sustain the Unrest campaign in Britain. Who can blame her for that?

Like pretty much all of us, Jen is living with ME/CFS (which sucks big time) and has to keep up with the demands of promoting the film (and our cause) internationally. That's quite a burden IMO. I'd call for a little grace.

Bill
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I think we’ve all read it a bit differently On the back of the previous barrage attacking the NHS it does feel a bit like UK bashing at times. As I said before as far as I’m concerned ‘crack on’. ...but don’t expect everyone to like it

I just think she should just be careful with that wretched twitter thing ....it’s so easy for things to be taken the wrong way...and she has put herself in this advocacy position...no one made her ...with that comes responsibility no matter how ill you are.

Jen is a human being and not a saint she is liable to have a bad mood and get a few things wrong occasionally I’m prepared to cut her slack but I will not stop making observations and criticisms if I disagree with what she’s said.
 
Jonathan Edwards said:
I think it is really important to get the format right for any attempt at educating students and doctors. I cannot see Unrest fitting in to curriculum lectures or into Grand Rounds for senior doctors. It is simply too long and provides no scientific material to speak of. It is the sort of thing that might be shown in the evening to some special interest group or society, but I am not sure how different that is from the charity-organised showings on university campuses or local cinemas that have already been organised.

Charles Shepherd has been buzzing around the place attending screenings. If he wants more funds to do that he will no doubt tell us. I think he may need a bit of a rest. And there has to be someone there to introduce the film who can answer questions I think.

I think it is important to realise that on its own Unrest is not going to change the views of doctors. For people with ME the film is easy to relate to because they recognise the symptoms. For doctors who cannot work out what is going on the natural reaction is likely to be 'surely that is just play-acting, it must be because the camera would not have been there that time she fell down'. Presumably that bit was play acting. It does not mean it was not a realistic portrayal of an event but how does anyone without ME know? The coverage of the background science would not convince anyone used to being sceptical about biomedical science. It would put them off. I found Unrest useful because I have spent the last five years listening to people with ME and getting an idea of what it is all about. If I had not I don't think I would have known what to make of it.

I think PACE debunking is a different target. In order to make any sense to medics you need first to tell them what PACE was - most have no idea. So basically you need a full lecture from someone like me to take people through the issues in detailed scientific terms - because anything less just looks naff and is an own goal. Unfortunately I do not have time to tour UK medical schools giving lectures on PACE. Moreover, part of my strategy is keeping my powder dry (less so recently) - I don't want to seem like some nutcase on a mission. That might suddenly change for various reasons but if it does I suspect in the autumn.
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I think these are all very good points.

As I said today on Twitter, I would love more medical students to see Unrest in UK, but if you show it to doctors without hard, hard science, who already have prejudiced view of patients with ME, they will probably not be convinced that the illness is biological rather than behavioural. We need science for that.

Maybe Unrest is perhaps better in a medical humanities setting, for example? It really is shame though if the UK funding was cut short because of piracy, I know the Scottish Parliament event was funded by Janet Sylvester herself as the Unrest funding had dried up. But she did a brilliant job bringing everything altogether and I think MSPs were certainly provoked into thinking more deeply about ME by seeing even just a short clip of the film and the subsequent discussion.

I used to be an occasional member of a medical humanities literature group, based at Edinburgh University, and I suggested Unrest ages ago to them, but I never heard back, the students who run the group are medical students and are so busy, I don't think they have much time to meet. I can see groups like that would probably be a v good context for Unrest screening.
 
Skycloud said:
JB complained of one individual who was repeatedly posting Unrest up on Youtube and said that had consequences for the funding of Unrest advocacy in the UK.

That's not 'tarring everyone with the same brush'. I didn't hear that.
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Sorry, can I clarify that, it's just I read the whole Twitter thread and Jen said that '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.'

I see her disappointment, of course, but it just did feel like she was angry with the UK in general and that is what I meant. I also thought she had had a wonderful time when she was here, that was the impression she gave, at least. Anyway, I just want to clarify tarring with same brush, and I am clearly not alone in having felt the whole UK was being held culpable.
 
Bill said:
No kidding. The unwarranted criticisms of Jennifer Brea on this thread and another are painful to read on an ME/CFS forum, especially given the great work she has done to raise the awareness of our disease. I'm embarrassed that she's had to read this stuff here.
Sorry @JenB. You deserve better.

Bill
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One is allowed to criticise an artist and still very much admire the film. Since you seem preoccupied by me, you may like to know I had private correspondence with Jennifer before Unrest was released and I helped her with some important stuff, which she was very grateful for. We haven't subsequently agreed on everything, but that is okay. Adults don't always agree. There is nothing I say here I would not say directly to Jennifer.
 
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arewenearlythereyet said:
I think we’ve all read it a bit differently On the back of the previous barrage attacking the NHS it does feel a bit like UK bashing at times. As I said before as far as I’m concerned ‘crack on’. ...but don’t expect everyone to like it

I just think she should just be careful with that wretched twitter thing ....it’s so easy for things to be taken the wrong way...and she has put herself in this advocacy position...no one made her ...with that comes responsibility no matter how ill you are.

Jen is a human being and not a saint she is liable to have a bad mood and get a few things wrong occasionally I’m prepared to cut her slack but I will not stop making observations and criticisms if I disagree with what she’s said.
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I've worked on many significant documentary films. It is work that can be both exhilarating and exhausting. But the promotional part that comes after a film is complete is wearing. I've never had to take on a fraction of what Jen B has over the past months, but trust me flying from city to city, attending screenings, doing interviews for the press and always needing to "be on" takes a huge toll on a person--and especially a person living with ME/CFS.

On such a tour there is rarely time to recoup or to honor one's crashing energy. PEM or not, one needs to show up, put on a smile, and attempt a brave front.

I have nothing but admiration for @JenB. I would not wish the demands of backing an international documentary on a person with ME/CFS if they were my worst enemy. Really. I can imagine precisely how hard this has been on her.

In that light, I can also imagine the upset involved in seeing ones work pirated (stolen) and the disappointment of having to reduce plans due to an economic shortfall associated with that piracy. She never attacked the people of the UK. She was trying to use the proceeds of her film in Britain to continue her advocacy campaign there.

I appreciate that she is taking on a role that puts her health in considerable jeopardy to raise worldwide awareness of ME/CFS. No other effort, in my estimation, has garnered such positive media attention or reached so many in the general public.

If she reads this, thank you Jen!

Bill
 
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I got the impression that Jen was really pissed off with this one person, and maybe was trying to get at them by emphasising the problems they had caused, but it came across as a bit weird and easy to misinterpret (which I think some people have done). To me it sounds like she has had some personal conflict with this one person, and that has bled into all her tweets on this issue.

I never saw anyone sharing Unrest on-line, saying that they'd already made enough money, etc. Being oblivious to that controversy and the heat around it, I thought Jen's tweets seemed a bit odd until I thought about how she'd be feeling emotionally about it all. It's must be odd for her having her irritated venting tweets picked over. To me this doesn't really sound like something worth discussing at this point, unless you really know the people involved.
 
Trish said:
Fair point. I was just a bit concerned that the film on its own is more of an awareness raising tool rather than an educational tool. And I do agree a lot of doctors need to be made aware of how seriously ME can affect people.
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I agree, in the end one has to tailor any message to their audience to have maximum effect. I suspect Unrest is far more effective then last years OMF symposium would have been to show in theaters. But for doctors wanting to get into ME/CFS research i might suggest the symposium plus Unrest and hopefully even some colleagues they could get in touch with.
I don't know how things are taught in medical school, but if we are ignored or maligned i would support a program for the students and of course the doc info packages and CME credit courses i mentioned earlier.
 
We need every eyeball in this fight whether they have directly paid to watch Unrest or not. The advocacy often has to do a lot with little resources, so it is great that people are working so hard to get the word out. We have to remember without Jen Brea's hard work, ME/CFS would not be in the public eye as prominently as it is now. It is a direct result of her work that more people are coming together to join in the fight. We need the rallying cry of so many others to keep the effort moving. Awareness and advocacy are the keys to getting the much needed resources to understand and ultimately cure ME/CFS.
 
You are right, @Frogger, I'm sure everyone on this thread agrees that Jen and Unrest have done an amazing job, and continue to do so. I hope Jen understands that and is looking after her health.

I think I need to resign from Twitter. It is a disaster to good communication.
It creates so many unintended misunderstandings, not least of which is that Twitter threads that, read in correct sequence, may make good sense, get broken up in my Twitter feed, so I'm forever trying to trace back to what on earth people are talking about.

My task for today - find out how to remove myself from Twitter. I only joined it in the first place because my daughter wanted to share with me funny cat pictures she found on it.
 
Trish said:
You are right, @Frogger, I'm sure everyone on this thread agrees that Jen and Unrest have done an amazing job, and continue to do so. I hope Jen understands that and is looking after her health.

I think I need to resign from Twitter. It is a disaster to good communication.
It creates so many unintended misunderstandings, not least of which is that Twitter threads that, read in correct sequence, may make good sense, get broken up in my Twitter feed, so I'm forever trying to trace back to what on earth people are talking about.

My task for today - find out how to remove myself from Twitter. I only joined it in the first place because my daughter wanted to share with me funny cat pictures she found on it.
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I really like Twitter, Trish, but agree is easy to misinterpret others, especially if you read a tweet in isolation.

A shame if you feel you want to leave, but I understand why if it is causing you stress.

This is how you deactivate: https://help.twitter.com/en/managing-your-account/how-to-deactivate-twitter-account

Am unsure of how easy/complex it is to leave...
 
Trish said:
I think I need to resign from Twitter. It is a disaster to good communication.
It creates so many unintended misunderstandings, not least of which is that Twitter threads that, read in correct sequence, may make good sense, get broken up in my Twitter feed, so I'm forever trying to trace back to what on earth people are talking about.
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I think it is okay to be on Twitter, you just don't need to read everything. I hardly do anyway. Twitter is good to show your support, to share your favorite links, but I don't think it is a platform for the discussion of the big issues.

If you need to step away, just uninstall the app or disable notifications. If you really need to leave, I am sure you will find better ways to use your energy, because social media is not worth getting stressed out about.
 
Frogger said:
I think it is okay to be on Twitter, you just don't need to read everything. I hardly do anyway. Twitter is good to show your support, to share your favorite links, but I don't think it is a platform for the discussion of the big issues.

If you need to step away, just uninstall the app or disable notifications. If you really need to leave, I am sure you will find better ways to use your energy, because social media is not worth getting stressed out about.
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Twitter is a great medium in many ways, you can learn lots about any subject you may be interested in. It's also very low energy to engage in - and has both an intimacy and a universality. You can show support for others v easily whose work you admire - in any domain - and also engage with the wider world. But all social media can be very stressful. I think you have to remember you can just turn off internet and the stress whooshes away.
 
I like Twitter, as posters have to get right to the point. I much prefer Twitter over reading paragraphs in FB. I wish we limited the number of characters here on S4ME; sometimes I feel like I am reading a book.

I am fine with Jen using Twitter. I think that Twitter may be the best place to respond to tweets. Using this forum to try and translate Twitter speak to S4ME speak, seemed to fail.

Hopefully we took away some key learnings from this experience, and can make communication improvements in the future.
 
I feel bad for JenB just because that one person is going so far out of their way to hurt her just because they think the film should be free and they don’t like her. Why should the film be free? It’s a documentary, it cost money to make, it costs money to promote etc etc etc. As I well know some people on the internet are just downright nasty and usually for really stupid reasons. Maybe people could help Jen out by searching out illegal free instances of Unrest and report it to google which will result in the link being removed. It’s a small thing but maybe helpful.
 
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