Award-winning film confronts attitudes to ME
An award-winning film exploring the experiences of people with ME arrives in the UK amidst signs that the medical community is rethinking its approach to the illness.
An estimated 250,000 people in the UK live with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). An estimated one in four of them is bed-bound. However, the disease receives little research funding, and recommended treatments on the NHS are often ineffective.
Unrest, an award-winning documentary telling the stories of people with ME, is released in UK cinemas on 20th October. It arrives amidst signs that the UK healthcare community is rethinking its approach to the illness. The current recommended treatments – Cognitive Behavioural Therapy and Graded Exercise Therapy – are ineffective or harmful for many patients and based on a 2011 trial that has been widely criticised by academics. Following years of campaigning by patient groups, and an Early Day Motion signed by 30 MPs, NICE recently announced a full review of its guidance on diagnosis and treatment.
The film is the project of Jennifer Brea, who 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.
Aiming to give her doctors the chance to see what she was going through when she was too unwell to visit them she turned a camera on herself. But she also reached out online to other ME patients online and discovered a hidden world of millions confined to their homes and bedrooms.
One was Jessica Taylor-Bearman from Kent who became ill just before her 15th birthday. She 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. If it was that simple we would all be better and not be in ill in bed.”
Dr Charles Shepherd, Medical Adviser to the ME Association said: “For years, ME patients have had to live not only with a debilitating condition, but also stigma and misunderstanding. The NHS is woefully equipped to support them, and the current recommended treatments are based on a study that was severely flawed. It feels we may be approaching a turning point, and I hope this film will be another catalyst for change.”
Notes to Editors
- Unrest premiered at the 2017 Sundance Film Festival where it received the Special Jury Award for Editing. It will have its UK theatrical release on October 20 in London and cities nationwide, followed by a Q&A tour with director Jennifer Brea.
- View more about ‘Unrest’ at: http://www.unrest.film/