Unrest

The theme of this film could not be more timely -- an accomplished, strong young woman falls ill with a mystifying malady and suddenly discovers that doctors dismiss her symptoms, misdiagnose the disease, or tell her it's all in her head. Once she deteriorates to the point of being bedridden, she realizes that she has been all but disappeared. Only through social media -- one of the few ways that allow her to remain connected to the world -- does she realize that millions around the world have been rendered similarly invisible.

Directed mostly from her bed and including footage of herself shot on an iPhone, this documentary weaves together director Jen Brea's personal story -- centered mostly around how she and her husband, Omar Wasow deal with the way her disease upends their lives -- with those of other patients. Much in the film is shocking and indeed hard to believe. It's hard to believe that some ME/CFS patients (myalgic encephalomyelitis/chronic fatigue syndrome) suffer from a form of the disease so severe that they must live in darkened rooms, unable to bear light, sound, or touch -- and that some must be fed intravenously. It's hard to believe that patients can be taken from their homes and forcibly institutionalized because health policy in some countries continues to be based on the outdated notion that the illness is psychosomatic. It's hard to believe that an illness so common (an estimated 17-30 million around the world) could be so under researched or so devastating.

I could not be more pleased to learn that Unrest has made the short list for the Oscars best documentary category. It's an underdog -- the film got its start through a Kickstarter campaign and has gone from a Sundance audience award, to place on PBS's Independent Lens lineup, to the notice of the Academy. Furthermore, it's directed by a woman of color who is disabled and is speaking on behalf of an extraordinarily disenfranchised group of people similarly disabled by the disease. It's easier to let people disappear, easier to imagine that it will never be you. But it's also #timeforunrest.

My brain doesn't work as well as it once did, so I hope you'll forgive me for being blunt. This film has been a remarkable gift for the millions of people suffering from the debilitating and almost entirely ignored disease ME/CFS. It humanizes our suffering in a way that has somehow never been done in film before. And it lays out in very simple terms the decades (or even centuries) of prejudice and ignorance that has marooned us here.

At the heart of the film are the true stories of a handful of people with severe ME/CFS, people trapped in their beds for days or for years, some unable to bear even minimal human contact.

I know this hasn't been the most coherent review...so often people with ME/CFS don't say anything because we can't say it well. Watch the movie, you'll get it.

There were so many times during this film that I cried. It's not just about Brea and her husband; there are several other ME/CFS patients you get familiar with, all unique and relateable people. You get to see the variety of ME life. Not just who they are now but who they used to be when they were free to design their life as they wanted.

It's never directly stated but the contrast of old home movies of the patients and voiceovers about scepticism... clearly these people were happy & driven before they got sick. They don't look like people who were headed to a nervous breakdown or other hypochondria. They seem to be energetic, driven, happy people. The idea that ME is a psychosomatic issue is shown to be nonsense.

As a spoonie I laughed to recognize a dozen or so "miracle cures" Brea tries that I've tried too. Awkward moments she had that I've had too (and felt like I was the only weirdo on earth to go through it). For anyone with chronic illness it's a validating movie, seeing that we're not alone.

I think this movie would be a great way for someone who is acquainted with a spoonie but not close enough to them to see their 24/7 life. Cousins, coworkers, classmates... this could help them understand. I think it would be a great addition to any class on disability discrimination, like to teach medical professionals or social workers to put themselves in the shoes of a sick person.

Brea and her guy are a very sweet couple, heartwarmingly devoted. And they're very educated & charming & good looking. It's easy to watch them discuss their life. The message of the film may be a downer but these folks and their friends are so lovable it's actually mostly pleasant to spend the time "with" them. Please don't avoid this movie because you think it will be depressing. It's a fascinating and exciting show, packed with information and very intimate moments. What I was left with was respect for the disabled, desire to see justice for those abandoned by the healthcare system (the research budget for ME is ridiculously small compared to other less life-ruining illnesses!!)... I feel stronger and more motivated to be a good citizen, after watching this. Not depressed, inspired.

Jen Brea is one of the severely ill due to ME/CFS. She films herself, directs, interviews doctors and patients via Skype, and edits mostly from her bed in order to document the severity of her disease (and millions worldwide) and how she and her husband, her caretaker, now have to forge a different life than the one they had imagined for themselves.

Patients experience neurological issues with sound and light sensitivity and coordination, pain, POTS, cognition issues, and debilitating fatigue. Exertion whether physical or mental will bring on crashes where symptoms worsen. Doctors and researchers discuss the disease.

Brilliant film. Compelling, informative, inspiring. Not to be missed.