een documentaire over de meest verwoestende ziekte waarvan je dokter nooit gehoord heeft.
Een aanrader voor politici, journalisten, maar bovenal vermoeidheidsdeskundigen die stellen dat
"de vermoeidheid [!, FT] vermindert, als patiŽnten minder gericht zijn op de klachten, meer gevoel
van controle hebben over de vermoeidheid en zichzelf lichamelijk actiever
vinden" (klik hier).
Canary in a Coal Mine
by Jennifer Brea
A film about life with M.E.,
the most prevalent and devastating disease
your doctor has never heard of.
Jennifer, a Harvard PhD student,
was signing a check at a restaurant when she found she could not write her own name.
Months before her wedding, she became progressively more ill,
losing the ability even to sit in a wheelchair.
Doctors insisted that her condition was psychosomatic rather than real.
As she dug deeper, she found she had become a part of a hidden world
of millions suffering from an illness for which there is evidence dating back to at least the 1930s.
The disease, myalgic encephalo-myelitis, was re-branded in the 1980s by the CDC as
'Chronic Fatigue Syndrome,' a name which became both a punchline and a Rorschach:
a wastebasket of undiagnosed conditions hiding a very real disease.
Scientists at the country's top institutions have found evidence of
profound metabolic, neurological, and immunological dysfunction in patients with M.E..
However, since the disease is not taught in medical schools,
doctors don't know how to recognize it,
effectively denying healthcare to a million Americans.
In Canary in a Coal Mine,
Jennifer documents her own story and the stories of Jessica,
a young British woman who runs a children's charity
from the room that has been her whole world for the last eight years,
Howard, an 80s rock publicist-polymath,
Mary, an activist, Liisa, a Canadian ex-buddhist monk, and
Leeray and Casie, a mother and daughter bedridden in Georgia.
Through extreme diets, experimental medication, political activism,
or by moving closer, or farther, from God,
each struggles to find their own way to fight, accept, and
sometimes, even thrive in spite of 'an illness that has no end.'
Watch the preview
Why tell this story?
This is also a story that reveals deep flaws
in our modern approach to medicine and the delivery of healthcare,
the tensions between science and medicine.
Medicine has always been troubled diseases patients could feel or demonstrate,
but it could not "objectively" measure.
This is especially true when it came to female patients.
Medicine locked epileptics in insane asylums before the invention of the EEG.
It debated as to the true nature of Multiple Sclerosis before the MRI came along in the 1970s.
In some countries, patients with severe ME are still forcibly institutionalized.
What has happened to this disease has happened before and is likely to happen again.
Whether or not you have a chronic illness,
everyone at some point will face a difficult, confusing, or scary health issue;
or it will happen to someone they love; or
they will confront some other obstacle that will alter the course of their lives and
destroy the image they once had of their personal future.
When that happens, how will we react? Will it destroy us?
Or will we be able to make beautiful things grow from those dark places?
To touch a wide audience,
we believe we need to connect to universal themes and
show the world what it really looks and feels like to live with this illness --
the sorrows, yes, but also the joys and moments of grace.
We will tell the story of M.E.:
the history, the science, the politics, but through the stories of our main characters:
patients who will bring us into their day-to-day lives and help us to experience,
through them, what it is to live with a severe chronic illness.
We ask them to turn their smart phones and digital cameras on their own stories.
This is important because we often donít look as ill as we feel every single moment of the day,
and our symptoms wax and wane in severity, as do our feelings about the future.
The film makes use of a combination of studio-shot interviews,
artfully-composed b-roll, archival footage, and self-filmed diaries.
Canary in a Coal Mine is, at its heart, a question:
what does this illness signify about the world we live in and
what do we all risk by ignoring the voices of the sick and the profoundly invisible?
What could we all learn by paying attention to those voices?
OK, I am psyched, how do I help make this film happen?
First, give and give generously, whatever that means for you.
Every dollar counts.
Second, spread the word!
Crowdfunding campaigns reach and exceed their goals
when very large amounts of people donate small amounts of money.
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