The following article appeared in The Hippocratic Post, and was written by Rebecca Wallersteiner, on 25th November, 2017. It features comment from Sarah Staples, and Dr Charles Shepherd, from the ME Association.
As NICE announces it will review current treatment guidelines for those with Myalgic Encephalomyelitis (ME), a disturbing new film ‘Unrest’ shines a light into the lives of patients around the world.
American Jen Brea was a Harvard Ph.D. student leading a seemingly charmed life until she was struck down by a mysterious fever that left her bedridden. Housebound, often bedridden, doctors were baffled by her symptoms but eventually she was diagnosed with ME, a devastating condition with no known cure or drug treatment.
As Brea sought answers for herself, and others, she decided to make a documentary which would reveal the reality of the daily lives of patients from around the globe, linking their stories together through powerful interviews and candid footage.
The result is Unrest, a powerful no-holds-barred film which has won an award at the prestigious Sundance Festival and received warm praise from critics. Many within the ME community believe it will help pave the way to greater understanding of the illness.
Sarah Staples, from the ME Association, a charity which works to support patients and their families with ME, praised the film and said:
“Unrest is an incredibly powerful and highly disturbing piece of work which lays bare what the lives of so many people with ME are like.
“For anyone would like to know more about this devastating and often misunderstood illness, it is crucial viewing.”
The film’s release coincides with NICE reviewing current guidelines for the treatment of ME, also known as Chronic Fatigue Syndrome.
Around a quarter of a million people in the UK live with the illness – an estimated 20,000 children, with ME the commonest cause of long-term sickness and absence from school.
Twenty five per cent of sufferers are severely affected – often housebound or bedbound.
The ME Association has welcomed the decision by NICE to review its existing treatment guidelines for the illness – which recommends Graded Exercise Therapy and Cognitive Behavioural Therapy.
They had previously said that the guidelines would not be reviewed, but reversed that decision in September following strident campaigning from patients and charities, including a 15,000 strong petition run by the ME Association.
Dr Charles Shepherd, the association’s Medical Adviser said: “The original recommendation to not update their treatment guideline provoked a real sense of anger and frustration among patients. Since it was first produced in 2007, there have been significant advances in our scientific understanding of what causes ME/CFS.”
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