Unrest

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.

Jen Brea started making this film while she was bedbound with a terrible - and terribly misunderstood - illness. It took her three years or more, but the finished product is very polished and emotionally devastating - while also offering notes of hope and uplift. The film follows Brea and other patients as they struggle to find sympathetic doctors and caring family members. Jen's story is the main throughline - she hits a low point after doctors tell her she has 'conversion disorder,' and then she begins to find meaning by connecting with other patients online. We see her formulate the idea for a film as she begins talking with other patients. It is a heavy film about a neglected illness - but there are moments of levity and joy sprinkled throughout. At the screening I went to, the audience laughed at appropriate spots. And at the end, a women in the audience stood up and said she finally understood what had been wrong with her for so many years. Getting this film out to medical professionals will help fill the gaps left by medical schools, which do not teach very much, if anything, about the illness known as myalgic encephalomyelitis. The CDC renamed in chronic fatigue syndrome in the 1980's, but as you'll see in the film, that name has done a lot of damage in terms of misperceptions and stigma.

No longer silent and hidden, "Unrest" effectively, artistically, and beautifully brings the topic of ME/CFS out into the open for all to see.

First-time director and patient Jen Brea presents the illness in a multi-dimensional manner, demonstrating the full reality of this complex disease. The severity and seriousness of the illness is conveyed, along with moments of grace, humor, resilience, and cinematographic artistry. In addition, the trajectory of ME/CFS is historically explained and includes interviews with prominent researchers in the field in order to provide the audience with the scientific underpinnings of the illness.

I recommend this film not only for patients with ME/CFS but for anyone who loves the cinema. "Unrest" stands alone on its own merits as an interesting, well-made documentary. It is also enlightening for those who suffer from related illnesses, as the experiences portrayed in the film can be quite similar.

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.

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.