Unrest film - Jen Brea

Event info updated

Patients on Q&A are both psychology students at Bath

Annabelle Fitch doing an MSc
Jack Waterhouse doing a PhD
 
Maybe they're in the midst of picking apart Crawley's quackery...

seems unlikely Action for ME would let them speak then though.
 
Picked up from FB
The event is being recorded as the screening room is too small and they have arranged to have it live streamed to a second room. I guess anyone who is going would need to get there early in case it is first come first served for getting in to the main screening room.

Anyone who wants to see it can contact the organisers through eventbrite. They haven't yet sorted out how they are making it more widely available.
 
Unrest film is collaborating with the CDC to offer a free showing of the film in Atlanta, Georgia. And this will count as continuing education for medical professionals. This seems like a big deal, I think?:)

Tweet from @unrestfilm:
Code: 
https://twitter.com/unrestfilm/status/930197780269645824

Link to the CDC website with more information:

https://www.cdc.gov/me-cfs/healthcare-providers/hidden-crisis.html

AMERICA’S HIDDEN HEALTH CRISIS: What Clinicians and Others Need to Know about ME/CFS — as Documented in Award-Winning Film and Discussed by Experts

You Are Invited to a Special Live, Local, and Free Continuing Education Event!

Date: November 30, 2017
Time: 6:30 – 8:30 p.m.
Location: Savannah College of Art and Design
173 14th Street NE, Atlanta, GA 30309 in the SCADshow Theater
Admission: Free
Continuing Education (CE) Offered: Free (for physicians, nurses, pharmacists, veterinarians, health education specialists, public health professionals, and others; for more information, please see below

Optional RSVP Requested — This event is free and open to the public.
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[ PS. There's a lot of cut/paste in this post so please let me know if I got something wrong! Especially since I'm going to add this event to the calendar. Thanks ]
 
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the recording of the Royal free one on 7 Nov isn't up yet either. It doesn't take long at all to put something online don't understand the delay from Royal Free NHS site......
 
This year has gone so quickly for me. We're already in November?! I wasn't expecting the AfME AGM for ages.

Oh - seems there's a video here:
 
So, does anyone on this forum live near Atlanta? :) Just curious.

My father lives in the Atlanta area but I know he wouldn't want to go to this.

I do hope he will watch Unrest when it comes on PBS (Independent Lens) in January but even that's not a sure thing.
 
Interesting Q&A - Jen always gives good value and here she mentioned some things that chimed with me that I don't remember her saying before.

 
Recording of the q&a


Pretty lightweight session
Jo Daniels talks the usual BPS crap she seems pretty dim
Sonya comes out of it better makes JD look like a drongo without saying directly you're talking shit Jo.
But then she goes on about donations to AFME..........Although the host brings it back to #MEAction and Unrest
 
Thanks for the link. I wanted to watch it, I started to watch it... I stopped watching it. Too slow. Needed some more pointed questions!

Hearing Sonya talk about Action for ME really makes me feel sad that well meaning people donate money to them.
 
Sly Saint said:
where did you get that info from?
according to the website:
The Panel consists of:
Chair is Dr Liz Walton - an academic GP with an interest in ME/CFS
Dr Charles Shepherd - Honorary Medical Advisor to the ME Association
Victoria Strassheim - ME/CFS researcher University of Newcastle
Ms Anne Nichol Sheffield ME/CFS Service Manager
Ms Diana Shapiro Carer of severe sufferer
Prof Annalena Venneri - Professor and researcher into ME/CFS University of Sheffield

https://www.eventbrite.co.uk/e/unrest-screening-plus-qa-tickets-39136536434#

or has he cancelled because of being on the NICE guidelines committee perhaps(?)

@Michiel Tack
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This is from a year ago. The panel was changed after protest.
 
On reading this thread (currently with posts only up to Nov 2018 - we might merge some related threads into it) I see that there is no negative commentary about the film, which I don't think accurately conveys the range of reactions. I think there has been some discussion on other threads.

Here's a post I made in Phoenix Rising in August 2017, before this forum started. When writing that post, I actually toned down my criticism because others had been so positive. Other critical reviews followed. In that same Phoenix Rising thread, I note that Jen Brea had been interviewed on my country's national radio, and that she had been a fantastic advocate - so I did and do recognise that good things came from the film. The marketing around the film and the international advocacy efforts it prompted was very impressive.

I think, with more distance from the time of the enormous buzz about Unrest, more people came to have some reservations about the film. I guess I'd just ask advocates thinking of directing people who know little about ME/CFS to this film to watch it again first.

https://forums.phoenixrising.me/threads/unrest-updates.49859/post-885756
I have mixed feelings about the film, but the negatives probably stem from my unrealistic expectations.

The film is in the New Zealand International Film Festival and it has been screened at quite a number of venues throughout New Zealand. I was thrilled to see that it would be screened 3 times at the cinema closest to me. I watched it two days ago.

The film is an enormous achievement. That Jen had the strength of spirit and foresight to start filming early on in the illness and to put herself and her illness out there for everyone to judge is amazing.

However I felt that a number of issues weren't sufficiently fleshed out and resolved. For example, Karina's case. Per Fink comes across as relatively reasonable. We see the protests to get Karina back home, but when she is home we see her sitting on her bed in a well lit room looking quite healthy. And she doesn't say anything. And so it's easy to think, well, maybe she was helped by the treatment. (I'm not saying that she was - just that the story as presented in the film could well lead people to think that).

I didn't get why quite a bit of time was spent on images of a setting (or rising?) sun seen from a forest road. Was the point that Jen was getting pleasure vicariously through images filmed in real time by her film crew who were in places that she couldn't be?

It could be just me, but prolonged images of adults crawling on the floor and up stairs make me cringe. I really hope it's just me, but I found those images lingered in a way that the persuasive points like how MS was hysterical paralysis right up until technology developed to allow for scans revealing brain damage did not.

There were lots of positives. I loved Ren's song ( @trickthefox ). And the images of the shoes in the Millions Missing protests around the world. The inclusion of the many people around the world with ME with great stories to tell. The girl in the pool - sorry, I have forgotten her name - was radiant, she and her family were a shining example of how to cope. Nancy Klimas was great. And more.

It was brave of Jen to show how we end up trying all sorts of seemingly bizarre remedies in our desperation to get well - a point well made. And the film does show very poingantly the impact of the illness on Jen and Omar's relationship. Jen is humble in her portrayal of the Millions Missing campaign, making it clear that it was very much a team effort and probably greatly downplaying her role in making that happen.

In the screening I attended, there were about 15 people including me in the audience. Judging from the slightly unkempt hair and the blankets (I was envious of their forethought) and the way people slowly slid down in their seats during the film, many of the viewers had ME or were accompanying a person with ME. There was a group of 4 healthy people who sounded to be attending most of the film festival films.

I've been looking for reviews of the film arising from its screenings in New Zealand but I haven't seen any.

My son (also with ME) wasn't keen to go, so I said I would check it out and see if I thought it was worth persuading him. I don't think I will drag him there. Partly it's because I think he doesn't need or want to see quite so vividly what severe ME looks like. But also its because I think some of this film (and I think he would also have a very low tolerance for images of people crawling too) would make him question, more than he does already, if he is really sick.

I don't think I'll take family or friends along either because I couldn't bear it if they came out feeling more uncertain that we are really ill. Maybe, and probably, I am just being too fearful about that.

Maybe the kind of film I really want to see that is unequivocally convincing about the biomedical nature of ME just won't be possible until we get the equivalent of the brain scans in MS.

I will probably go to the next screening, to watch it again and pick up on the things I have missed.

I've struggled to put in to words what I thought of the film. When I left the cinema, I didn't feel validated or uplifted. I mostly felt sad. And I guess that's ok, because the current reality of ME is pretty sad and the film did show that very well.

I'd like to hear what others have thought about Unrest.
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