Jen Brea tweets about U.K. Unrest campaign

Jonathan Edwards · Mar 28, 2018

RuthT said: ↑

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.
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Sure, but my understanding is that PWME in the UK are sending what pennies they have to MEA anyway. I don't want for a minute to impede that but I am not sure it has much to do with pirating a video.

Jonathan Edwards · Mar 28, 2018

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.
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The group I have been involved with have not said anything about making the project public so I will not say more at present. This is not, as far as I know an MEA initiative in fact. I think I would prefer to let charities who are planning these things do their own PR work. I can think of a dozen reasons to give £18,000 to the MEA but we all know that.

Jonathan Edwards · Mar 28, 2018

RuthT said: ↑

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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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.

Trish · Mar 28, 2018

I see Unrest more as a public and political awareness raising film, and also as affirmation for PWME who feel our situation is not seen and understood. It doesn't actually have much educational content about why we are in the situation we are in, the problems with GET/CBT, how doctors can be more helpful for PWME, the directions research needs to go etc. I don't criticise it for that - it wasn't intended as a detailed educational tool for doctors. We can't expect it to be what it is not.

I lent my DVD to a non medical friend who has patiently listened to me banging on for several years about the iniquities of PACE and the way PWME are treated, and who knows about my symptoms and difficulties. Her response was interesting - she was a bit disappointed, and said it didn't tell her anything new, or help her to understand ME better, though the personal stories were engaging. I had a similar response from family members.

I think we need to be wary of claims that Unrest is an ideal tool for educating doctors. I agree with @Jonathan Edwards that the limited time spent on ME in a medical curriculum and in post graduate education would be better focused on clear factual information from an expert.

Alvin · Mar 28, 2018

Trish said: ↑

I see Unrest more as a public and political awareness raising film, and also as affirmation for PWME who feel our situation is not seen and understood. It doesn't actually have much educational content about why we are in the situation we are in, the problems with GET/CBT, how doctors can be more helpful for PWME, the directions research needs to go etc. I don't criticise it for that - it wasn't intended as a detailed educational tool for doctors. We can't expect it to be what it is not.

I lent my DVD to a non medical friend who has patiently listened to me banging on for several years about the iniquities of PACE and the way PWME are treated, and who knows about my symptoms and difficulties. Her response was interesting - she was a bit disappointed, and said it didn't tell her anything new, though the personal stories were engaging.

I think we need to be wary of claims that Unrest is an ideal tool for educating doctors. I agree with @Jonathan Edwards that the limited time spent on ME in a medical curriculum and in post graduate education would be better focused on clear factual information from an expert.
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I agree in principle but i also think we should not discount the persuasive ability of seeing things for oneself and personal stories, especially when dealing with a system based on lies against us. A good lie is easier to believe then the truth, so one can argue the truth needs to make an impact to get through. That said i won't at all disagree on better education and technical information. In a way its why i had started threads about starting our own medical journal or designing CME credit courses or doctor information packages. All ideas that didn't inspire continuing support or discussion unfortunately

RuthT · Mar 28, 2018

Alvin said: ↑

I agree in principle but i also think we should not discount the persuasive ability of seeing things for oneself and personal stories, especially when dealing with a system based on lies against us. A good lie is easier to believe then the truth, so one can argue the truth needs to make an impact to get through. That said i won't at all disagree on better education and technical information. In a way its why i had started threads about starting our own medical journal or designing CME credit courses or doctor information packages. All ideas that didn't inspire continuing support or discussion unfortunately
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Agree with Alvin that personal stories are persuasive and some of the feedback that seems to be coming across from US medical school filmings is how rare it is for Drs to see the patient’s perspective of chronic & misunderstood illness. Some U.K. Drs have written about how different it is when they are on the other side of the stethoscope.

I think the film showings have been voluntary ‘extras’ & agree different approach would be needed to in formal teaching time.

I think the call is for the respective organisations to make based on experience to date & their priorities. Every penny raised makes a difference & fundraisers do say that expanding the pot can be achieved by specific initiatives.

Trish · Mar 28, 2018

RuthT said: ↑

Agree with Alvin that personal stories are persuasive and some of the feedback that seems to be coming across from US medical school filmings is how rare it is for Drs to see the patient’s perspective of chronic & misunderstood illness.
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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.

Sasha · Mar 28, 2018

Jonathan Edwards said: ↑

Sure, but my understanding is that PWME in the UK are sending what pennies they have to MEA anyway.
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Not necessarily - I think a lot of UK PWME give to quite a range of ME charities, including overseas ones. That will often include the MEA, of course, but not exclusively so.

Cinders66 · Mar 28, 2018

I don't think unrest was supposed to educate so much via science, which is still sketchy and emerging, although she showed the 2 day testing abnormalities and discussed energy production. It was to educate through showing the impact and suffering especially of severe ME usually hidden and not taught about as part of CFS/MUS anyway and PEM also, a key to the disabling nature of our illness and again unseen and with uk CFS, pretty much erased from the chronic fatigue narrative too. I don't think it's wasted on Drs and would hope it could convince of our legitimacy and need without saying we've got this scan to prove everything.

The film wasn't as focused on GET CBT and PACE as these have been lesser issues in the States I guess, especially since the IOM report. I'd like to see an edited one hour version which could be shown in medical schools - a lot of jens treatment experimentation could be cut out, as well as less on hysteria and the case studies could be pruned without loosing impact. If there is money needed for further education they can crowdfund and I'm sure they'd get support. In uk I feel part of issue has been the "dry" style of educating in a field that's frankly a mess of definitions and poor BPS research feeding off that with a fundamental skepticism still deep in the medical profession. We have fragments of scientific evidence of abnormalities as a whole convincing but most needing larger studies, the 2 day testing surely most strong but not really used in uk. We have research discrediting the CBT model and science and showing our QOL and functioning very low and as an addition we have Jens film showing our lived experience as the medical profession dithers delays and debates, in a way I don't think should be dismissed in its usefulness to get people to understand.

Guest 102 · Mar 29, 2018

adambeyoncelowe said: ↑

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.
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This is true, piracy is a shitty thing to happen to anyone but is pretty much ubiquitous - v had to clamp down on - I have for past few months been getting Google alerts offering free downloads of my novel - this makes me furious but there is little I can do about it. Re. Unrest, I think unfair to tar everyone in UK with same brush - many pwME and their relatives and friends already worked their socks off volunteering to speak/host UNREST screenings. I missed out on a family event because I attended the Scottish Parliament evening - I could easily have said no when I was invited, but I felt it was so important to take the opportunity of Unrest as a vehicle to offer my perspective. Also many pwME in UK also already contributed to crowdfunding of Unrest.

Edit: I was also asked by Unrest team to speak at a local Odeon event before Christmas but I was unable cos of back problems. And after the Scottish Parl event I was also asked by local organisers to speak at two other Scottish screenings, which I regrettably had to say no to, it takes a lot of emotional/mental energy, not just physical, to attend these events. I just know that pwME I am in touch with - up here and in London & other parts of UK - have worked hard to spread the word of Unrest.

Guest 3 · Mar 28, 2018

Nasim Marie Jafry said: ↑

I think unfair to tar everyone in UK with same brush - many pwME and their relatives and friends already worked their socks off volunteering to speak/host UNREST screenings.
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I think it’s unfair too, especially if you look at Googles DMCA notices:

NOTICE TYPE:
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Copyright claim #1
KIND OF WORK:Unspecified
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And

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It’s not all about piracy on YouTube is it?

MErmaid · Mar 28, 2018

I feel this thread carries some negative overtones about Jen. If it’s the intention of this thread to discourage ME advocacy, then IMO, you have succeeded.

If people are unhappy with Unrest, then they are free to make their own film. If people are unhappy with Jen, then they are free to become a ME advocate.

Guest 3 · Mar 28, 2018

MErmaid said: ↑

I feel this thread carries some negative overtones about Jen. If it’s the intention of this thread to discourage ME advocacy, then IMO, you have succeeded.

If people are unhappy with Unrest, then they are free to make their own film. If people are unhappy with Jen, then they are free to become a ME advocate.
Click to expand...

What are you talking about?

Who is discouraging ME advocacy?

I think any film maker has to listen to good and bad critiques, it’s part of the territory.

The point is Jen basically accused UK citizens of pirating her film and causing her an 18,000 dollar loss which make her cut short her advocacy efforts in the UK. If you look at the stats, her losses aren’t exactly all related to the UK are they? It’s part of the internet. Once you have a film on the internet, it can be pirated, which it was. Yet, it seems to be the UK causing her so much loss. I think it was a bad move to accuse UK ME patients of doing this.

I also thing Unrest as an educational tool is not appropriate. Can we not say something negative without being chastised?

Skycloud · Mar 28, 2018

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.

Bill · Mar 28, 2018

MErmaid said: ↑

I feel this thread carries some negative overtones about Jen. If it’s the intention of this thread to discourage ME advocacy, then IMO, you have succeeded.

If people are unhappy with Unrest, then they are free to make their own film. If people are unhappy with Jen, then they are free to become a ME advocate.
Click to expand...

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

Barry · Mar 28, 2018

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.
Click to expand...

I think Jen also felt that everyone who then watched it on YouTube was just as culpable, which is no doubt true in some cases, but as @Trish pointed out, by no means everyone.

MErmaid · Mar 29, 2018

I’m embarrassed that after Jen read this thread, she felt compelled enough to post and defend herself.

Jen deserves a lot better!

Trish · Mar 28, 2018

I am sorry you see it that way, @Bill and @MErmaid. I think a large part of the problem on this and another thread is the problem of trying to convey a complex message in a series of tweets. Sometimes this can cause unintended upset or misunderstanding.

I am a great admirer of Jen. She has achieved a huge amount and Unrest is a great advocacy and awareness raising tool.

This morning I opened Twitter to find a couple of tweets from Jen that, to me, came across as accusing British pwme of being too mean to buy the film, thereby depriving ourselves of the only advocacy available.

I know that's not quite what Jen said, and later in the day I saw that she had explained more fully that it was one individual who had done the damage. But as someone who paid for the DVD and gave a donation, I felt unjustly accused. Of course that was not Jen's intention, but Twitter has that unfortunate effect sometimes.

Edited for clarity.

MErmaid · Mar 28, 2018

Trish said: ↑

I am sorry you see it that way, @Bill and @MErmaid. I think a large part of the problem on this and another thread is the problem of trying to convey a complex message in a series of tweets. Sometimes this can cause unintended upset or misunderstanding.

I am a great admirer of Jen. She has achieved a huge amount and Unrest is a great advocacy and awareness raising tool.

This morning I opened Twitter to find a couple of tweets from Jen that, to me, came across as accusing British pwme of being too mean to buy the film, thereby depriving ourselves of the only advocacy available.

I know that's not quite what Jen said, and later in the day I saw that she had explained more fully that it was one individual who had done the damage. But as someone who paid for the DVD and gave a donation, I felt unjustly accused. Of course that was not Jen's intention, but Twitter has that unfortunate effect sometimes.

Edited for clarity.
Click to expand...

I read the same tweets and my takeaway was that one individual from the U.K. was called out, certainly not the entire U.K.

Twitter is not a format for everyone. But it’s highly interactive, and you can always post a tweet if you desire more clarity.

Bill · Mar 28, 2018

T

Trish said: ↑

I am sorry you see it that way, @Bill and @MErmaid. I think a large part of the problem on this and another thread is the problem of trying to convey a complex message in a series of tweets. Sometimes this can cause unintended upset or misunderstanding.

I am a great admirer of Jen. She has achieved a huge amount and Unrest is a great advocacy and awareness raising tool.

This morning I opened Twitter to find a couple of tweets from Jen that, to me, came across as accusing British pwme of being too mean to buy the film, thereby depriving ourselves of the only advocacy available.

I know that's not quite what Jen said, and later in the day I saw that she had explained more fully that it was one individual who had done the damage. But as someone who paid for the DVD and gave a donation, I felt unjustly accused. Of course that was not Jen's intention, but Twitter has that unfortunate effect sometimes.

Edited for clarity.
Click to expand...

Trust me, the issue is not with you.

Piracy hurts small independent documentary filmmakers, that's a field I've worked in as a career. Twitterverse has its own challenges. I'm confident Jen is not blaming those in the UK (or anywhere else) who supported her films but is just expressing natural frustration that piracy cut into the expected revenues in a way that limited her hopes for the Unrest campaign in Britain.

I think that's pretty easy to understand and that any frustration should be given the benefit of the doubt, all things considered.

Some of the comments that have been hurled at her make me feel embarrassed-by-association.

Do we really want to eat one of our own?

Bill

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