Unrest, an award-winning documentary about ME (Myalgic Encephalomyelitis) is screening in Portsmouth on 16th November, organised by Sally Callow, founder of Portsmouth-based ME Foggy Dog, which raises funds and awareness for the ME Association. Sally also lives with ME and here she tells S&C what made her organise the screening and why she thinks Unrest is vital viewing for health professionals, people with ME and Portsmouth residents. Additional reporting by Sarah Cheverton.
At 6pm on November 16th at the Eldon Building, I have organised a screening of Unrest, an award-winning documentary by Jen Brea, who created and directed the film to show fellow sufferers that they are not alone. Jen was 28 years old when she began experiencing health problems, but a series of doctors failed to diagnose the cause of her symptoms, which included profound dizziness and recurring infections. One neurologist diagnosed her with ‘conversion disorder’, which used to be known as ‘hysteria’.
Jen was eventually diagnosed with Myalgic Encephalomyelitis (ME), a neurological illness that affects all bodily systems. She decided to capture her experiences using her iPhone, and this footage, along with interviews with people living with severe ME became the basis for her documentary (see trailer, below).
In an interview with The Verge, Jen said:
Initially when I was filming, I wasn’t really intending or thinking about making a documentary. But I was just sort of stuck in bed without a lot of answers, and was just really scared and worried about what was happening to me. I had lost the ability to read or write, so I gravitated toward my phone because it was the one thing that was in my bed that was light enough to hold.
Unrest became a Sundance Film Festival winner, and has received strong reviews ahead of its release later this month, including from The Los Angeles Times which describe the documentary as “a sensitive and arresting rally cry for increased awareness about this disease, and an existential exploration of the meaning of life while battling a crippling chronic illness.”
As well as capturing the experience of severe ME, Jen made the film to raise awareness about the disease, which continues to be widely questioned and often dismissed by the public, in pop culture, and even, as Unrest shows, by health practitioners.
So what made me organise a screening of Unrest in Portsmouth?
I have had ME for 10 years. I consider myself very lucky to ‘only’ have a mild form of the illness, which means my daily life is restricted but manageable most of the time. I had ME in my teenage years and was house bound between the age of 13 – 15 years. I appreciate the stress and anxiety the illness causes for families. It is common for sufferers to have the illness twice, once in childhood and then later on in life.
My diagnosis took 3 years to come about after over 30 tests for other conditions. There is no test for ME. You only get the diagnosis when everything else has been ruled out. Many in the healthcare professions don’t believe that ME is a real illness, and think it is some kind of psychological disorder. There is currently no treatment.
It is my mission to raise awareness of this invisible illness, which affects at least 17 million people worldwide and 250,000 people here in the UK.
I am the founder of the Portsmouth-based, global charity brand ME Foggy Dog. I raise funds and awareness for the ME Association in the UK by sending a soft toy dog called Foggy around the world and charting his journey online. Foggy is a globetrotting adventurer that travels the world raising awareness of the illness. He is on a mission to travel 250,000 miles in one year.
Foggy travels because so many ME sufferers can’t. The global nature of the campaign highlights that ME is a world-wide illness that does not discriminate against age, race or gender. All money raised by ME Foggy Dog goes to ME research. We need to find a cause to be able to find a treatment or cure.
ME is also controversially known as Chronic Fatigue Syndrome(CFS), as the ME Association state on their website:
Initially, and for many years, there was a debate as to whether it was actually an illness at all. Although the situation is still not perfect, many influential bodies, (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal Colleges of Physicians, Psychiatrists and General Practitioners amongst them) are now in agreement that it is real.
Like Jen, I want to raise awareness about this still-misunderstood illness, so I decided to organise a screening of the film. I hope to see a wide range of people at the screening, including sufferers, carers, support networks, family, healthcare professionals, employers and the wider public.
I really believe this could be the start of positive change. Come along, support the M.E. Association and get involved.
Unrest is screened at the Eldon Building, Winston Churchill Avenue at 6pm on 16th November.Tickets are £3 each.
Main image by Shella Films.
Logo courtesy of ME Foggy Dog.