If only you could see ME now
When her life was derailed by the illness once dismissed as ‘yuppie flu’, Jennifer Brea started a video diary.
It has been more than 60 years since a bewildering epidemic swept through the Royal Free Hospital in north London, rendering almost 300 members of staff incapacitated, and forcing the place to close for three months. At the time, in 1955, the mysterious, polio-like outbreak (called simply “Royal Free disease” for a while) had no obvious cause, certainly no cure and varying symptoms – extreme tiredness, headaches, sore throats, depression, inflammation of the spinal cord – in each victim, frustrating doctors more than fascinated them.
In the same year, the new disease was written up in the medical journal The Lancet as “myalgic encephalomyelitis”, later shortened to ME. The mystery remained, though. By the Eighties, despite further cases having been identified all over the world, the entire Royal Free episode was put down to “hysteria”, while the illness received the dismissive nickname “yuppie flu”. At best, doctors (and employers, and friends and family, and strangers) were sceptical of victims’ insistence that their problems were physiological, not psychological. At worst, they were denounced as malingerers.
Today, there are thought to be roughly 250,000 sufferers of ME – also known as chronic fatigue syndrome – in the UK, and more than a million in the US, the majority of whom are women, though many more could be undiagnosed. It’s a condition that remains starved of research funding compared with other illnesses with a similar strike rate, and also one that’s still incredibly difficult to diagnose or even treat, meaning that the lack of understanding and empathy from the general public persists.
Jennifer Brea, a journalist and filmmaker from New York, is one sufferer aiming to change that. In 2011, when she was a PHD student at Harvard University, Brea caught a virus while travelling with her husband, Omar Wasow, and recorded a temperature of 104°F. Infection after infection followed, normally staved off by short courses of antibiotics, but her body refused to recover.
“As soon as the infection was over,
‘I thought maybe that’s what happens when you’re 28, or I’m out of shape’
I’d feel dizzy again, with increasing and worse neurological symptoms. In between, I was almost completely normal but I noticed that I couldn’t do some of the things I used to be able to do,” she says.
A keen cyclist and skier, Brea, now 35, found her threshold for exercise completely diminished. Her legs would give out on the slopes, say, or she could only do half the distance she used to. Any expenditure of energy came with a profound cost.
“I thought, maybe I’m getting older. Maybe that’s what happens when you’re 28, or maybe I’m out of shape.” She became worse, to the point where she had to stay indoors, shrouded in quiet and darkness, for days or weeks. After several misdiagnoses, she was eventually diagnosed with ME, a chronic illness that she’d never heard of.
After 18 months of being bedridden, Brea had almost completely lost the ability to read or write, turning instead to watching Netflix and surviving on the support of Wasow, an assistant professor of politics at Princeton University. A friend then suggested she keep a record of her condition by recording video and voice notes on her iphone.
“At the beginning, it was just a place to put all of that grief and fear and anger: to process thoughts and emotions that I wasn’t sharing with anyone,” she says, sitting crosslegged on a chair in a friend’s London home.
Those notes turned into video clips, some taken by Wasow, to show doctors what she meant when she described being unable to speak or get up. Previously, people assumed she meant tired or tongue-tied, rather than literally incapable of moving from the floor.
“The doctor I showed the videos to went white,” she says. “I realised I