When is Resting Never Enough?

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SoSome of you know that I live with a disability, the mysterious, debilitating chronic disease, ME/CFS, myalgic encephalomyelitis.  I have lived with this disease for 35 years. I have a disease; I am not my disease.  Its cause is still unknown. No cure is available. And it is terribly misunderstood. 

I urge you to watch a film called "Unrest" which premieres on Independent Lens  on PBS Monday night, January 8, 10 p.m. EST, 9 p.m. CST (check your local listings.) Here is the description:

(San Francisco, CA) — Filmmaker Jennifer Brea was a Harvard PhD student soon to be engaged when she was struck down by a mysterious fever that left her bedridden. As her illness progressed she lost even the ability to sit in a wheelchair, yet her doctors insisted it was "all in her head." Unable to convey the seriousness and depth of her symptoms to her doctor, Jennifer began a video diary on her phone that eventually became the powerful and intimate documentary, Unrest. Written, directed, and produced by Brea, Unrest premieres on Independent Lens Monday, January 8, 2018, 9:00 to 10:30 CST on PBS.

Once Jennifer was diagnosed with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), she and her new husband, Omar, were left to grapple with how to shape a future together in the face of a lifelong illness. Refusing to accept the limitations of life in bed, Jennifer embarks on an online voyage around the world where she finds a hidden community of millions who have disappeared from their own lives, confined to their homes and bedrooms by ME. Using the internet, Skype, and Facebook, these disparate people connect with each other, finding a much-needed sanctuary of support and understanding.

At its core, Unrest is a love story. Though Jennifer and Omar may never live the life they originally dreamed about, together they find resilience, strength, and meaning in each other and their new-found community. Says Brea: “It’s my hope that in sharing this world and these people I have come to profoundly love, that we can build a movement to transform the lives of patients with ME, accelerate the search for a cure, and bring a greater level of compassion, awareness, and empathy to millions upon millions of patients and their loved ones wrestling with chronic illness or invisible disabilities.”

“As experts struggle to figure out what causes chronic fatigue syndrome, Jennifer’s film opens a window into what it’s like to live with this devastating illness,” said Lois Vossen, Executive Producer of Independent Lens. “This brave and fearless film introduces us to this community of millions of ‘missing’ people who have lost all normal functions to ME, and is a powerful demand that more be done to understand and cure a terrible disease.”

Unrest made its world premiere at the 2017 Sundance Film Festival and has been independently distributed with the support of Sundance Institute’s Creative Distribution Fellowship. Visit the Unrest page on Independent Lens for more information about the film, which will be available for online viewing on the site beginning January 9.

About the Filmmaker

Jennifer Brea (Director/Writer/Producer) is an independent documentary filmmaker based in Los Angeles. She has an AB from Princeton University and was a PhD student at Harvard until a sudden illness left her bedridden. In the aftermath, she rediscovered her first love, film. Her feature documentary, Unrest, premiered at the Sundance Film Festival in January, where it won a Special Jury Prize. She is also co-creator of Unrest VR, winner of the Sheffield Doc/Fest Alternate Realities Award. An activist for invisible disabilities and chronic illness, she co-founded a global advocacy network, #MEAction, and is a TED Talker.

About Myalgic Encephalomyelitis (ME)

 A condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion), ME causes dysregulation of both the immune system and the nervous system. The effects are devastating enough to leave 25% of patients homebound or bedbound. An estimated 15-30 million people around the world suffer from ME, approximately 75-85% of them women, and 80-90% of them undiagnosed.