"Canary in a Coal Mine" is now UNREST

We have some big news I want to share: we’re officially changing the name of "Canary in a Coal Mine" to "Unrest." Over the last three years, I’ve grown very attached to the name Canary, but it needed to change and I want to tell you why.

First, one of the defining challenges of this illness has been the horrible name, Chronic Fatigue Syndrome. Doctors, media, coworkers and even loved ones misinterpret us as just being tired, and often even accuse seriously ill patients of being lazy.

The truth is, patients who have been bedridden for years are not tired or lazy or ‘resting’; they are in a constant state of fighting just to be alive. Whether you are mild or severe, you know how hard it can be to push through, day in and day out. Even when we might look like we’re resting, it’s a fight. I wanted a name that represented that struggle. Unrest describes the experience of all of us who are constantly resisting both the limits of our bodies and the larger social stigmas that have held back equal access to treatment and care.

Second, one of the most exciting developments over the last year has been the rise of a global movement of patients and allies coming together to fight for health equality. The folks drawing attention to the are also engaged in a form of unrest. We are attempting to disrupt the status quo that consigns desperately sick people to the margins of medicine and society. Coming together, engaging in collective “unrest” – I wanted to capture some of that spirit in the title, too.

Finally, Unrest represents the hope we all share: that with a real investment in this disease, we can discover the root causes and develop treatments. Then maybe someday we can “un-rest” and get back to our lives. 

In 2013, the midst of our Kickstarter campaign, one patient said, “It’s an uprising from our beds.” I’ve returned to that phrase again and again when thinking about how this film might do good in the world. I want people outside of our circles of ME patients, friends and family to see how we, people with so little to spare, are coming together, loving and supporting each other and challenging some of the biggest forces in society. Whether in bed, at work, or outside of government offices, we are in a state of unrest for our health and for justice.