It was a warm night in New York City, and a friend was going to DJ at a Manhattan night club, so, along with my best friend – my BFF as I like to call her – we rallied some folks to join us to come out and show some support and have a good time.
Then, just an hour before we were due to leave for the night club, a wash of exhaustion overcame my BFF, that included drastic flu-like symptoms, and her reporting that she suddenly felt like she was struck by a truck. Soon she was barely able to move or even lift her arms. I watched as her big beautiful blue eyes, became blood shot and it seemed like her whole body dropped in misery.
This was not the first time, and would not be the last, that her on-again, off-again severe struggles with ME (Myalgic Encephalomyelitis) also known as Chronic Fatigue Syndrome, would strike her down and make her skip another fun night of clubbing. She had to quit her job because she couldn’t stand up anymore, then moved in with her boyfriend who became her carer – walking around her neighbourhood became impossible, as she feared that she’d collapse in the street and be unable to get home. Even using the toilet became difficult and taking a bath was skipped for two weeks once, because the intense feel of the water’s heat was overwhelming. Her nails turned blue, her hair fell out in clumps and she became hyper sensitive to chemicals, smells, light and noise.
At the time, spring 2001, the illness she had contracted in her thirties, remained still misunderstood, and she often got brushed aside as it “all being in her head” as if she was making these debilitating physical symptoms come upon herself.
Finally, through a new film, there is a powerful voice, backed by a supportive community and a movement to give worldwide attention to those, like my friend, who are suffering, and dying, from ME/CFS. I watched a preview of Unrest at the BFI Southbank on 16th October, here in London, and urge you to see it as well. It is something that is giving millions – a voice.
Millions struck down
In the film, you’ll see many stories from people around who have this still little understood disease. Did you know that an estimated 17 million people suffer from ME/CFS? Of those afflicted, nearly 85 % are women. Here in the UK, current estimates reveal that more than 250,000 people have the disease. That figure is more than double the number of individuals with HIV or Multiple Sclerosis. 80% of people with ME go undiagnosed, due to a lack of education and awareness, according to information provided by the Unrest team, and hundreds have died from the disease, with many taking their own lives.
Hey, it isn’t about just a couple of hipsters missing a clubbing night that might make you concerned, it is all the missed moments of my friend’s life — and of the others who are absent from life’s happenings. In the years my BFF has suffered with ME/CFS, much time has been spent in bed, including planning her wedding to the caring boyfriend who became her husband. She ordered her dress online and did not include music or dancing at the celebration. While she pulled off the wedding, what followed was six weeks of being bedridden.
Newly married, young, confined to her bedroom, that was kept like a dark cave, there were many times when my friend did not think she would live.
In Unrest, you’ll watch a similar story unfold, as the film’s director Jennifer Brea, who at age 28 became ill with ME/CFS, began filming her life. While diagnosis at first for Jennifer was confusing, and she was told it must be a rare illness that few others had – she took to the internet and discovered thousands of people, like her, who were bedridden and missing out on their lives.
Unrest shows how Jennifer, and her husband Omar, are confronting ME/CFS, from the early days of their marriage, the out-of-nowhere disease that now consumes their daily lives. It is an experience that has led Jennifer to become a co-founder of ME Action, and through that start a movement that in recent years inspired hundreds of people to protest in 25 cities around the world, under the campaign and hashtag #MillionsMissing.
In filming Unrest, Jennifer not only turned the camera on herself, but also interviewed and filmed a number of others, often at 10 minute sessions as the subjects were so ill and had to rest between takes. On screen, you’ll watch Jessica from Kent, England, who has been confined to her bedroom since she was 14, and Ron Davis, a Stanford geneticist who is trying to save his son’s life, among other people. Especially chilling was a story told from Denmark, and (avoiding a spoiler) you’ll have to watch Unrest to see what happens.
Crying out for decades
In a Q&A session with the audience (the preview night of Unrest was very well attended) Jennifer explained:
We’ve been crying out for decades and no one is listening, until now, mainly through social media channels that are helping the ME community.
For more than 30 years now, Jennifer noted, it is a disease that is the least funded for research (in the US only $6 million is allocated annually), and largely ignored by the medical community. With millions of sufferers too ill to leave home, it is often an invisible disease, that few have enough energy to make noise about. At times, Jennifer told us in the film, she didn’t even have the strength to write emails.
Despite ME/CFS – Jennifer, along with a team of film creators, including Lindsey Dryden, were able to collaborate and make Unrest happen. As Lindsey said:
I was attracted to this film because people aren’t listened to, and people weren’t being believed, yet it’s an incredibly important story to tell.
What can be done?
This is a tear jerking, must watch of a film that will compel you to want to help those who are suffering from ME/CFS, and try to understand the illness better. Unrest is a call to action for everyone, with urgency, and what is asked is:
- Become an ally, and voice for those who are living with private pain of ME/CFS
- Be open, if you are suffering, and vocal
- Encourage people to see the film
- Share news about Unrest on social media using the hashtag #TimeForUnrest
- Host a screening of Unrest at a community venue
- UK citizens are urged to write to their MP
For Jennifer, who attended the film preview at the BFI Southbank, in a wheelchair, she reports that she’s getting access to medications that are helping her improve, and she stays hopeful that she’ll recover. For my friend, who does not want to be revealed on the internet, but did approve this blog post under request of keeping her name out, she is in recovery now, and says she has come out the other side of this dark illness – although is always at risk for a relapse.
Unrest opens across the UK this Friday, 20th October — see listings at unrest.film
For those of my friends here in East London’s Hackney, you can see Unrest this coming Saturday, 21st October at the Hackney Picturehouse – followed by a Q&A with producer Lindsey Dryden.
See the Unrest trailer here.