Unrest - reviews and general articles

Newsletter from the Time for Unrest team today. (Sorry, no link, as it was an email.)

 

Thanks for posting it but, meh. I got to the part where she starts to list all the various types of people who, in her opinion, should be in it and gave up. If Jen was to fit every type of person who has ME into the film, and tell their stories, the film would last a week. As ridiculous as the argument that I've seen that Unrest and the other docs on ME should be free - somehow they would be made and distributed and supported solely on good will. Neither are bad ideas, in isolation, they just aren't grounded in any sort of reality. <end mini rant>

 

I am sympathetic to the authors candid display of anger, frustration, abondonment, and isolation. But her conscious choice to repeatedly channel these energies toward Jen, leads me to infer that the author is not taking any self responsibility. Her attempts to blame/shame Jen may serve the author well as a temporary reprieval from the pitfalls of processing her deep rooted rage. But overall I rate the article generously as one star, while Unrest is still a ten in my book.

 

I've tracked down the blog the author talks about:
"
Unrest – A Personal Perspective
Jan15
Some of my more devoted readers and friends may know that I was contacted quite awhile ago by Jennifer Brea, the woman behind the recently released documentary “Unrest,” about being in her film. If you haven’t read my more general review of this film and how it harms the very people it claims to represent, I highly suggest reading that post by clicking here before you go any further in this one."

as it says, you may need to read the first post before this one:

https://documentingme.net/2018/01/15/unrest-a-personal-perspective/

Warning: neither make easy reading.

 

Do you have any views on this, @Jonathan Edwards?

 

I think the poster is making life difficult for everyone including their self. There is an irony in the sentence:

'If you haven’t read my more general review of this film and how it harms the very people it claims to represent...'

One thing that does harm patients' credibility is unnecessary argument about terminology. It doesn't help a scientific community trying to understand an illness suffered by millions, often including their loved ones, for people to claim ownership of a special pathology for which the scientists have no evidence.

 

I end up arguing this point over and over with several ME activists on twitter, and I've never seen this put forward more succinctly, so thank you

 

I'm very excited because tonight will be shown the first media report about Unrest in Germany!

We didn't have a single article, review or blog post on Unrest so far. Tonight at 18 pm on the tv show "RTL Explosiv" will be a segment with interviews with Jen Brea and Prof. Scheibenbogen. Prof. Scheibenbogen informed the German Association for ME/CFS about it.

RTL Explosiv wouldn't be my first choice, it's very sensational (and Unrest will be probably between segments on "I'm a celebrity get me out of here" or the like) but I think it reaches a wide audience and is one of the biggest German tv channels. I hope it will be easier afterwards to get other journalists interested.

(Edited: typos)

 

German "RTL Explosiv" tv segment. Four and a half minutes.
https://rtlnext.rtl.de/cms/chronisc...er-muede-durch-seltene-krankheit-4142123.html

 

From a blog:

http://danibp.blogspot.co.uk/2018/02/unrest.html#comment-form

 

another cooking blog!

http://www.cooking2thrive.com/blog/tag/cookingtothrive-com/

 

I've commented on this one (not the first Sam, the second, currently awaiting approval*).

I find the idea of someone with a small personal blog suddenly being love-bombed by thousands of grateful ME sufferers quite funny for some reason. Not saying we should do it, just that I find the idea funny.

*EDIT: unless there's another Sam waiting to be approved before me. This blogger is going to think everyone with ME is called Sam.

 

Unrest film screening and panel discussion
by UC Berkeley School of Public Health

https://www.eventbrite.com/e/unrest-film-screening-and-panel-discussion-tickets-42371589565

Unrest film screening and panel discussion
ME/CFS: Spotlighting a Neglected Disease

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects at least a million Americans, often striking people during the prime of their life and leaving up to 75 percent of them unable to work and 25 percent bedridden. Up to 90 percent of those afflicted remain undiagnosed or misdiagnosed, only a handful of doctors specialize in the disease, and there is no effective disease-modifying treatment. What can be done to help patients both individually and on a public health level?

Join us for a screening of the Oscar-nominated documentary Unrest, chronicling the impact of ME/CFS on the lives of patients around the world, followed by a panel discussion comprised of members of the film team and local clinicians and scientists specializing in ME/CFS.

----- Some attendees may be sensitive to strong scents and odors. Please refrain from wearing colognes, perfumes or other scented or chemical products to the event. -----

Panelists:

Lily Chu MD, MSHS has a background in internal medicine, geriatric medicine, and health services research. She is currently co-vice-president for the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. She is interested in all aspects of ME/CFS ranging from pathophysiology, diagnosis, and treatment to epidemiology, healthcare provider education, and access to quality medical care.

Ronald Davis, PhD is a world leader in the development of biotechnology, especially the development of recombinant DNA and genomic methodologies and their application to biological systems. He directs the Stanford Genome Technology Center, where he and his research team develop new technologies for the genetic, genomic, and molecular analysis of model organisms and humans with a focus on clinical medicine, diagnostics, and biosensors. After his son became severely ill with ME/CFS in 2011, he shifted his research focus: he also directs Stanford’s Chronic Fatigue Syndrome Research Center where his team applies an array of technologies to improve the understanding, diagnosis, and treatment of this debilitating disease.

José G. Montoya MD, FACP, FIDSA is originally from Cali, Colombia and completed his medical degree with honors at the Universidad del Valle. For the past 13 years, his research endeavors have included building a multidisciplinary team at Stanford University focused on elucidating the central pathogenesis of CFS. He has been able to centralize efforts of several Stanford and nationwide investigators in an attempt to understand the role of infection and the immune system in CFS. He is also the founder of the Immunocompromised Host Service (Infectious Diseases) at Stanford University Medical Center.

Allison Ramiller is a Master of Public Health candidate through the Online MPH program at UC Berkeley. She has always been passionate about working for the public interest and advancing public health, particularly for disenfranchised populations. Prior to joining SMCI, a leading organization focused on ME/CFS community engagement in research and treatment, she served as special assistant in the Washington office of the Brennan Center for Justice. Allison has a bachelor’s degree in psychology with minors in neuroscience and sociology from the University of California, Davis.

Moderator:

David Tuller MPH ’06, DrPH ’13 is a senior fellow in public health and journalism at the Center for Global Public Health at the School of Public Health. He was a reporter and editor for 10 years at the San Francisco Chronicle, and his work has appeared in The New York Times, The Washington Post, Health Affairs, and many other publications. Over the last two years, he has reported extensively on ME/CFS in his investigative series, “Trial By Error”, for the well-regarded science site, Virology Blog.

This is hosted by the UC Berkeley School of Public Helath and co-sponsored by the International Association for CFS/ME, Open Medicine Foundation, Stanford ME/CFS Initiative, Solve ME/CFS Initiative, and Workwell Foundation. Registration is recommended to attend.

 

Just in case anyone wants to know or indeed go, it's on Tue, February 20, 2018

4:30 PM – 8:00 PM PST

 

Facebook post from German TV channel RTL about the tv segment. First German Facebook post on Unrest (that is not from pwME or organizations). Please like or comment if you feel up to it.

 

Screening in Mumbai

"
The Sundance award-winning documentary Unrest opens with grainy shots of a young woman lying on the floor; her nose and forehead are out of the frame until she tries to sit up, before falling back down. The only sounds are her laboured breathing, the clicks as she turns and moves her camera, and her body sliding and crawling across the wooden floor before she pulls herself onto her bed and falls asleep.

Screened in Mumbai last week at ‘Skin Stories: love. desire. disability’, an ‘inclusive film’ festival, the documentary is a glimpse into the life of Jennifer Brea, a young woman who lives with myalgic encephalomyelitis (ME) — also known as Chronic Fatigue Syndrome. Her story was one among the several films curated by Point of View — a feminist non-profit organisation — where perceptions and experiences of disability, intimacy and love converge."

http://www.thehindu.com/entertainme...-chronic-fatigue-syndrome/article22837276.ece

 

I'm amazed and appalled that osteoarthritis is missed that frequently.

 

I like the idea, too. When I tried to add a comment, nothing happened.

 

Interesting review from someone in Singapore (who is not an ME patient but has multiple other chronic conditions), and reactions from her healthy family members.

"
Best Documentary in Ages
It was hands down one of the best documentaries I’ve watched in ages, and I was bawling throughout the film. (Okay, more like sniffling in silence, because my partner’s dad was nearby. I didn’t want to alarm him.)

While I don’t have ME/CFS, I do live with plenty of other chronic illnesses to make up for it. Even though the pains that we experience are different, the ultimate impact is the same. It affects our careers, and relationships with everyone around us. It scrambles your identity, and changes you both inside and out. It reduces you into a rubble of a human being, dependent for aid, and sometimes struggling for survival, even."

https://www.achronicvoice.com/2018/03/04/film-unrest-healthy-movie/

 

Excellent article about Unrest from The Wire - India
A Film on Chronic Fatigue Syndrome That Tells a Story We Don't Normally Hear

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for intersectional approaches for feminists, disability rights activists and allies. Even if you abhor the idea of a film that forces you into activism, it is – along with everything else – the reclamation of a narrative by a woman, with a heartwarming love story to boot.