Unrest - reviews and general articles

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

Thank you for your support these amazing past two weeks of our broadcast premiere on PBS's Independent Lens and our worldwide debut on Netflix. We have been absolutely blown away by your support on social media, the success of your house parties, and by the amount of people you have helped us engage throughout the world!

We just wanted to share some highlights from these last two weeks and the impact your support, organizing, and generosity have had.

Media coverage
Our PBS and Netflix premieres have dramatically expanded the reach of Unrestand its impact campaign, garnering new coverage from the Wall Street Journal, Vogue, Pacific Standard Magazine and Bitch Media.



What's exciting about this new coverage is that it's the first time Unrest is being discussed in conversation with other movements and forms of media, whether it's placing it in the context of disability rights (and the long-running debate over the social v. medical model of disability), the growing representation of chronic illness on screen or the larger cultural meaning of stigmatizing and marginalizing people living with ME:
While we tend to think of illness narratives as personal stories only, Unrest hints at a larger cultural epidemic: namely, the widespread denial or discounting of that which is other to us, a phenomenon that we see everywhere from the streets to social media to our political landscape. Who reading this hasn’t been trolled or gas-lighted, had a very real and personal experience discounted, or been told that something is “all in their head”?...

...What if we didn’t wave away that which we do not understand and turned toward, instead of away from, even those things that we feel we do not suffer from ourselves?

– Je Banach, Vogue
House Parties
Over the course of the past month, in addition to hundreds of thousands tuning in, over one hundred households around the world took part in our official house parties program. From Helsinki to Los Angeles, friends and neighbors gathered together to watch Unrest, share experiences and mobilize to take action. Your screenings were fruitful and constructive, community-building and awareness-raising. We cannot thank you enough.

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Deborah Main’s house party in Austin, Texas.
You opened up your homes to friends, neighbors, medical professionals and politicians and in the process, began vital conversations about why it’s #TimeforUnrest. In these intimate spaces, you bore witness to each other’s experiences and rallied together to sign petitions, fundraise, and enlist allies. House parties have already sparked further screenings at medical schools, fundraising for advocacy and research, and led the creation of new support groups and local advocacy initiatives! Now that we are on Netflix, hosting a house party is easier than ever. (To host a public screening, go here.)

Host a house party
Twitter Marathon
The day of broadcast, we mobilized influencers on Twitter, organizations, and leaders in our ally communities of disability rights, chronic illness, women's rights, science and healthcare communities to talk about Unrest over the course of a 12-hour "Twitter marathon." Our broadcast hashtag, #UnrestPBS had over 24 million impressions, and reached over 6 million users.

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Guests of our Twitter marathon included New Yorker writer Meghan O'Rourke, gospel hip-hop artist Trip Lee, and disability rights activists Alice Wong, Dominick Evans and Ady Barkan.

Here, for example, is Ady talking about how he is trying to make meaning after his ALS diagnosis:
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Support #MEAction + #TimeforUnrest
Over the next many months, we are going to be consolidating our efforts by bringing Unrest's ongoing outreach and education efforts under the same house as the organization that launched the #MillionsMissing campaign and supports patients and advocates around the world – #MEAction, the US non-profit organization I co-founded. We'll be communicating in the coming weeks about what this will mean and more ways for you to get involved in the movement.

The enormous success and reach of Unrest has been made possible by an army of volunteer organizers but also a team of dedicated staff. If you would like to help us keep growing and expanding the reach of this movement, please support our future home, #MEAction, by making a donation today.
Donate now
Take Action
Even if you didn't attended or host a house party, you can still help out by taking these actions:

Sign the NIH Petition

Sign the Global Petition

Call Francis Collins

People are hearing us, because of you. Thank you!!


In solidarity,

Jennifer Brea, Laurie Jones & The Unrest Team

Can get enough of Unrest? Here are even more highlights
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Erin Sweeney’s house party in Newark, New Jersey.
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April Thompson’s house party in Washington, DC.
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Jen Taylor’s house party in Hagerstown, Maryland.
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Dr Carrot said:
I'm not particularly familiar with the politics of this, but someone appears to have posted a lengthy critique of Unrest that accuses Jennifer Brea of planning to exploit someone's funeral. Fairly long read, for those who struggle to take in info:

http://planetthrive.com/2018/01/unrest-review-part-1/

I think it's completely ridiculous but in the interest of balance I thought it was worthy of posting here.
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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>
 
Dr Carrot said:
I'm not particularly familiar with the politics of this, but someone appears to have posted a lengthy critique of Unrest that accuses Jennifer Brea of planning to exploit someone's funeral. Fairly long read, for those who struggle to take in info:

http://planetthrive.com/2018/01/unrest-review-part-1/

I think it's completely ridiculous but in the interest of balance I thought it was worthy of posting here.
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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.
 
Dr Carrot said:
I'm not particularly familiar with the politics of this, but someone appears to have posted a lengthy critique of Unrest that accuses Jennifer Brea of planning to exploit someone's funeral. Fairly long read, for those who struggle to take in info:

http://planetthrive.com/2018/01/unrest-review-part-1/

I think it's completely ridiculous but in the interest of balance I thought it was worthy of posting here.
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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.
 
Sly Saint said:
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.
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Do you have any views on this, @Jonathan Edwards?
 
MeSci said:
Do you have any views on this, @Jonathan Edwards?
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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.
 
Jonathan Edwards said:
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.
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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! :):party:

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)
 
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From a blog:
"
Thursday, February 1, 2018
Unrest


Yesterday morning while exchanging some emails with my Fun Book Club ladies, Maggie (one of our most vivacious members) suggested in the thread that we watch a new documentary on Netflix all about her disease.

I've known that Maggie suffered from something that I didn't understand, she is sometimes able to attend book club, and sometimes not. When she does attend her spirit is high but physically she's tired, and not just normal tired, bone-tired. She told us that she suffers from ME, or Myalgic Encephalomyelitis (formerly referred to most commonly as Chronic Fatigue Syndrome), but I didn't really know what that meant in any meaningful way.

So I watched Unrest yesterday afternoon and what an eye-opener it was. What did I know about Chronic Fatigue Syndrome except that it was a disease that was ridiculed, do you remember the jokes about it? The term ME much more aptly describes this disease, it is not just about fatigue, it affects the body on a deeply cellular level. It is basically cellular collapse of the entire body, and there is no cure and really no treatment for it. In fact it is very difficult for scientists to even get funding to do research into the cause, the treatment or the cure. This is a disease that needs more awareness... pronto!

I encourage you to watch it even though it will break your heart. How much do you know about ME? Do you know anyone who suffers from it?"
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http://danibp.blogspot.co.uk/2018/02/unrest.html#comment-form
 
another cooking blog!
How Many Cures are we Missing?
After happening across a documentary entitled, “Unrest” this weekend, I’m pondering the question: How many cures are we missing?

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“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

That’s the powerful quote that stuck with me after watching the heart wrenching story of Jennifer Brea and others who suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) also sometimes known as Myalgic Encephalopathy.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

ME/CFS is a complicated illness affecting the neurological, immune, endocrine and energy metabolism systems. Like Multiple Sclerosis, Lyme Disease, Celiac Disease, and Fibromyalgia, ME/CFS has attracted controversy. For many years, it was a debated whether it was an illness at all. Today, up to 90% of people with this syndrome go undiagnosed. Approximately 75% of those affected can no longer work and 25% are homebound and sometimes bedridden.

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Unfortunately, the story we often tell when an illness has vague symptoms, is chronic or intermittent, is difficult to diagnose, has no cure, or is difficult to treat is that the patient has a psychological disturbance rather than a physical illness. Some doctors directly tell patients the symptoms are all in their head.

It has happened to me. During the two years I spent with an intracellular parasite encapsulated in a capped tooth, I was told by two different doctors that the extreme fatigue, abdominal pain, abnormal bleeding, and pain behind my right eye that occurred between each round of pneumonia were all in my head. The story they were telling nearly caused my death.

I had psittacosis that I contracted from pet Cockatiels which unbeknownst to me had been illegally imported. My diagnosis was confirmed by both a blood titer and a positive test of the birds. The good news is, I lived. The bad news is, it was an immense struggle to get medical help until I had 104 temperature, incessant vomiting, and pneumonia. At that point, I was considered ill. The fact that it kept recurring was considered unrelated.

That illness was 30 years ago. Any time I have crossed paths with one of those two doctors since then he asks me, “Are you sure those birds had something to do with it?” Yes, I’m sure. The tests indicated the birds carried the organism. The USDA asked for custody of the birds so they could save tissue samples to use as evidence against the pet store owner. YES, I’M SURE!

I am sure, but he is not. In spite of the supporting science, this doctor who is an animal rights advocate cannot bring himself to let go of his story. In his story, animals do not cause harm.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

Every time I hear someone condescendingly say, “I believe in science,” I cringe. It’s not that I don’t believe in science. It’s that I recognize that we don’t have as much scientific knowledge today as we will have tomorrow. And what we learn tomorrow may turn today’s knowledge on its ear.

I also recognize that the story we construct around scientific observation may be filled with bias that can do real harm and, as Jennifer Brea so astutely points out, may cause us to miss a cure for a very real disease.

It can be difficult to develop a narrative most likely to cure. Some physical illnesses have associated psychological components. Sometimes depression is a reasonable response to the altered life circumstances we face from physical illness. Some wounds to the psyche manifest as somatic symptoms. There’s no doubt it’s complicated.

Just because it’s complicated is no reason to take a shortcut, rely on assumptions, perpetuate myths, or be dismissive of a patient because they have something outside your realm of expertise or experience. Perhaps my greatest disappointment with the medical community came when no one seemed remotely curious why I got pneumonia every time I stopped taking antibiotics and why I had continual symptoms in between rounds of pneumonia.

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I wanted someone to be curious to solve my puzzle. I thought that’s how diagnostics worked. I believed getting curious and trying to figure things out were a large component of practicing medicine. I believed that until the point at which I read my medical charts. It was an eye opening experience.

If you have an autoimmune disorder or auto-inflammatory disorder like MS, Celiac Disease, Lupus, CREST Syndrome, or Moersch-Woltmann syndrome, it may take months or even years to get an accurate diagnosis. The same is true of ME/CFS and many other chronic conditions – even common ones.

A study published in 2007 in The International Journal of Clinical Practice (found here on Pub Med) found “The under-diagnosis of common chronic diseases in the developed world ranges from about 20% for dementia and cirrhosis to 90% for depression and osteoarthritis. The delay in the prompt diagnosis and initiation of treatment is associated with increased morbidity and mortality for most of the reviewed diseases.”

There are models of hope: A movement toward Patient and FamilyCentered Care makes the patient part of the care team. Translational Research embraces the input of patients and the community as it seeks to implement scientific research into patient care. Systems that value the input of patients can help shift the story that is told about a disease.

Systems that invite curiosity, innovative thinking, imaginative approaches, and new information (even that which challenges current beliefs) rather than treating them as threats could vastly improve diagnostics and treatment plans.
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I view curiosity, a willingness to question, and the willingness to sometimes be wrong as confident qualities. I don’t believe that any physician will have all the answers. That would be unrealistic.

What I do hope for is physicians who are willing to exhaustively pursue knowledge that will help their patients. I hope for doctors who ask good questions. I long for a system that is not dismissive of ANY patient. I hope for physicians who can embrace and incorporate other opinions. I wish for practitioners with enough strength, character, and perspective to recognize areas in which they may be biased and with enough courage to question themselves.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

Until we begin to question our stories, how many cures are we missing?
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http://www.cooking2thrive.com/blog/tag/cookingtothrive-com/
 
Sly Saint said:
From a blog:


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