An award-winning documentary in cinemas shows the day-to-day reality of living with ME – and the shocking lack of research around the condition that affects millions around the world
Around 250,00 people in the UK are believed to suffer from ME (Myalgic Encephalopathy or Myalgic Encephalomyelitis) also known as Chronic Fatigue Syndrome. It’s an under-researched condition and 80% of sufferers are undiagnosed. The attitude of many people, and doctors, is that’s it’s all in the mind – and psychosomatic, rather than a physiological condition. In the 1980s it was called ‘yuppie flu’ and as far back as the 1950s it was considered a form of hysteria suffered mainly by women.
A new documentary, Unrest, sets out to put all the misconceptions straight. It’s is a remarkable insight into the condition told through the eyes of its young American director, Jennifer Brea, who suffers from the condition.
Brea was a 28-year-old Harvard PhD student about to marry her fiancé Omar Wasow when she suffered a high fever that left her prone to infection after infection, and to eventually becoming bedbound. Facing the possibility of a lifetime’s confinement to bed, Jennifer says she ‘fell down a rabbit hole and discovered a hidden world of thousands of patients around the globe, many of whom had disappeared from their own lives and who were using the internet to connect with each other and the outside world’.
From her bed she started filming her video diaries on her iPhone and later her Skype conversations with other sufferers. Determined to get well, Brea started a crowd-funding campaign to turn her video diaries into a proper film production. It took four years, but has already raised awareness of the condition and, she hopes, more funding for medical research.
‘I want people who watch the film to understand ME is a serious, life-changing illness with a long history, and one that has been seriously neglected because of sexism and because of ignorance and biases within the medical community,’ says Brea. ‘I want everyone to see and experience people living with disabilities as complex and fully human.’
In her Ted talk, Brea explains that, ‘The key symptom we [ME sufferers] share is that whenever we exert ourselves, physically or mentally, we pay – and we pay hard.
‘It’s estimated 15 to 30 million people around the world have this disease… yet doctors do not treat us, and science does not study us.’
Brea’s documentary won an award at this year’s Sundance Film Festival. It’s the story of one woman’s determination and is truly inspiring, yet manages to be unsentimental.
Brea has experimented with many diet and lifestyle factors, and one that did make a difference was reducing her exposure to mould. She now lives in LA, the sunshine state of California, while her husband shuttles back and forth from his job at Princeton University on the East Coast.
Unrest is released at selected cinemas from 20 October. See unrest.film