Myalgic Encephalomyelitis – ME – Jennifer Brea made a documentary From her sick bed
What is ME Myalgic Encephalomyelitis ?
- ME – also called Chronic Fatigue Syndrome – is a medical condition characterised by profound and disabling fatigue
- Symptoms include: loss of muscle power, debilitating pain, difficulty sleeping and cognitive dysfunction affecting memory and concentration
- The cause of ME is unknown, but many patients contract it after a viral infection
- Women are four times as likely to have ME than men
- The NHS guidelines on ME treatment are currently being revised
Jennifer Brea was struck down by ME ( Myalgic Encephalomyelitis ), and found herself bed-bound, a prisoner in her own body. Now, she has invited the world on an intimate journey into a condition that some deny even exists, interviewing fellow patients from all over the world – from her sickbed. She spoke to the BBC’s Natasha Lipman.
As the opening credits roll on the documentary, Unrest, we see filmmaker Jennifer Brea lying on the floor of her bedroom, eyes glazed over, as she stares apparently peacefully at the camera. Then, with arms shaking, gasping for breath, she tries to pull herself up, managing only a few inches before she collapses back on the floor. Eventually she is able to crawl slowly to her bed, before dropping the camera, collapsing with relief and fatigue.
Episodes like this initially came as a shock for Brea. Seemingly out of nowhere, she would suddenly lose all muscle force, unable to move her body, or even lift her head. She struggled to get words out, let alone form sentences, and even the smallest exertion would have knock-on effects that lasted for days, weeks, or even months.
“I’d never been sick before and so I had this sense of abundance of health and body and life. I had never really heard about ME or people becoming ill in their 20s – it just wasn’t a part of my awareness. So I never imagined that something like this could happen to me.”
While studying for a PhD in Political Economy and Statistics at Harvard, she met fellow student, Omar Wasow, an internet analyst and entrepreneur who once taught Oprah Winfrey how to surf the net. They married in 2012. Home videos show the life Brea and Wasow led before she became sick – travelling the world, scuba diving, candlelit dinners with friends – a perfect vision of a carefree young couple in love.
Shortly before their wedding, they both contracted a virus, coming down with a high fever. Wasow recovered completely, but afterwards Brea remained plagued by strange symptoms. Whenever she got a sore throat or a cold she would have dizzy spells and crash out for days at a time. She suffered from insomnia, and memory loss – symptoms she now recognises as a mild form of ME. They all seemed to get worse after exercise.
“Omar and I used to always do this bike ride along the river – six miles out, six miles back -and I noticed that while I could make it six miles out, then I had to call a taxi to get back home. Or I would go skiing with my family, and suddenly feel my legs giving out,” she says.
“I didn’t know why.”
She suspected there might be something wrong with her immune system and went to her doctor, but the lab tests always came back normal.
“I was told that either I wasn’t really sick or that maybe I was just depressed or that it was all in my head,” she says.
Brea was eventually diagnosed with Conversion Disorder, a mental condition with unexplained physical symptoms – formerly known as hysteria – and told it was due to a childhood trauma she couldn’t even remember.
But when she showed doctors the disturbing footage of her symptoms from the video diary she’d been recording on her phone she was sent for a battery of further tests.
“I still had hope that I just had a rare disease – that if I could just get to the right specialist they would figure out what was wrong with me,” says Brea.
It turned out that what she had is actually very common – ME, a condition that affects up to 17 million people worldwide, according to some estimates. Now her illness had a name, but she discovered that there was very little medical research into it, much controversy over treatments, and no cure.
“That was something that I never imagined could happen. I always thought that medicine would be there to help me,” says Brea. “In some ways getting the diagnosis was a bit of a relief but it also gave me this sense of: ‘Oh my gosh, what I have to deal with is actually much more complicated than I imagined.'”
ME has always caused debate. Brea’s film shows clips of US TV host Larry King calling it “yuppie flu”, and TV anchor Katie Couric describing it as “a made-up condition”. Patients are battling against this perception in both the medical community and society as a whole.
“It’s not just about the disease itself, it’s also about those layers of stigma and lack of understanding,” says Brea.
For nearly two years, she was too ill to get out of bed for more than 10 minutes a day.
“I spent a lot of time wondering: ‘If I never leave this bedroom again, if I can’t read, write or think, then who am I? What value does my life have? What purpose or meaning does it have to even keep existing, if I am living a life that is this limited?'”
She describes ME as a “perfect prison”, custom-made for each sufferer.
“It doesn’t matter what you once were, it removes your ability to exert yourself and be a part of the world.
“If you were an accountant then you might find that you can no longer add and subtract, if you’re a mother you can’t be there for your children the way you want, if you are an athlete or a teacher, that’s impossible. Everything becomes impossible.”
In the documentary we see the couple’s private anguish as Brea wonders about their future as a family. “I can’t be someone’s mum like this. I can’t be someone’s wife like this,” she says, in tears.
Wasow admits there have been times where he has found her condition incredibly difficult, particularly in the beginning. “The person I’d fallen in love with was sort of fading before my eyes,” he says.