by Nathalie Wright, independent.co.uk, 7 January 2018
A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken seriously by doctors
“I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.”
The film in question is Unrest, a documentary directed by and featuring Jennifer Brea, a former Harvard PHD student who, after developing the disease ME, started filming her experience. For those not directly affected by the illness, their go-to reference may be one of the many stereotypes that have proliferated in the British media: ME is “yuppie flu”; it’s an illness of lazy people or type-A personalities, malingerers, hysterical women, militant activists, scroungers, even people who are “a bit tired” and “don’t feel like going to work today” (according to a Ricky Gervais standup routine). For the first time, a major documentary is speaking back to decades of misinformation and showing what often doctors don’t even see: the daily life of sufferers, of whom there are about 260,000 in the UK.
Unrest follows Brea when she first becomes sick after a 40C fever. For the next year, she suffers repeated infections and her health declines dramatically. But doctors do not take her seriously – a state of play recognised by many young women who are dismissed by the medical system. When she finally sees a neurologist, he diagnoses “conversion disorder”. Hysteria. There must be a trauma that she can’t even remember. There is nothing physically wrong with her that could be causing her symptoms. And so, Brea decides to walk the two miles home – what could be the harm after all? When she arrives back, her brain and spinal cord feel like they are on fire. She is bed bound for the next two years and now, several years later, uses a wheelchair.
After eventually being diagnosed with ME, Brea was able to access some treatments in her native US, but there currently are no cures. Like most patients, an initial flu-like illness triggered the disease. Her symptoms include profound exhaustion (utterly unlike everyday “tiredness”), extreme pain and a worsening of symptoms after even minimal exertion – a symptom known as post-exertional malaise or PEM. ME, like autoimmune diseases, mainly affects women and is often developed in the prime of life, though children are also affected. Indeed, it is the biggest cause of long-term sickness absence from school. Since 1969, the World Health Organisation has recognised ME as a neurological illness although its precise mechanisms remain unknown.