Imagine you’ve lost control of your body, you’re constantly experiencing debilitating pain and even the smallest exertion is too much to bear and you don’t know why?
An estimated 250,000 people in the UK are all too familiar with these symptoms as this is their experience of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). Filmmaker, Jennifer Brea, has the illness and bravely turned the camera on herself and other sufferers to show what it is really like to live with ME. The result is Unrest, an award-winning documentary telling the stories of people with ME, out in UK cinemas on 20 October.
Jennifer was working on her PhD at Harvard when she suffered a series of sudden viral infections that left her incapacitated and doctors baffled. Bedbound, often in excruciating pain, and frustrated that medicine seemed to have little to offer, she began looking for answers. As there is no outward physical evidence of ME it is prone to being misunderstood and overlooked, and the butt of jokes, cue Ricky Gervais clowning: “Wouldn’t we all like time off work?”! Even the medical community is still struggling to understand the illness and what the best course of treatments should be.
It’s not known what causes ME, but it’s been decided that many patients contract the illness after a viral infection. Anyone one can get it, men, women, children and people of all races, however, it’s been proven that four times as many women get it than men.
Some common symptoms of ME include: Significant physical or mental fatigue which prevents patients from maintaining an upright or seated position, loss of muscle power, debilitating pain and cognitive dysfunction.
Jennifer’s original aim filming was to give doctors a chance to see what she was going through when she was too ill to visit them in person. As part of her research she discovered a global community of ME sufferers online, who are often confined to their homes and bedrooms. One was Jessica Taylor-Bearman from Kent, who became ill just before her 14th birthday. Jessica has spent a decade largely bed-bound and lives with constant pain and fatigue. Having received several different diagnoses, she says she feels let down by a system that has not always believed her illness is real: “The UK isn’t set up at all to deal with ME. It’s awful. The problem is that we’re left in the community, and because we’re stuck at home, people don’t see the full picture of what we’re suffering. People go missing. It’s like falling off the edge of the earth – you’re suddenly gone.
“I’ve experienced a lot of stigma, especially when I was at my most vulnerable and people thought I was putting it on. It’s very hurtful to not be believed.”
The fact that Jennifer was able to make the film is a feat in itself as she was confined to her bed 99% of the time when shooting began. She conducted interviews via Skype and an iPad teleprompter and was able to see in real time what her team of film-makers were shooting on the ground. In other words, she directed the film from her bed.
Well done Jennifer for making this film. Here’s hoping that it gives a clearer perspective on what it means to have ME and attitudes and medical advancements are changed for the better as a result.
Unrest is released on 20 October 2017 in the UK.
For more information, visit: www.unrest.film.