Oscar-nominated film director in ME plea to MSPs

An Oscar-nominated American director has urged MSPs to do more to improve care for Scots living with ME.

Jennifer Brea, whose award-winning film Unrest was nominated in the prestigious documentary category, made the plea at a special screening at the Scottish Parliament sponsored by SNP MSP Ben Macpherson.

The film charting her personal struggle with the condition has been hailed for raising awareness of the little-understood illness that is estimated to affect around 21,000 people in Scotland.

Myalgic Encephalomyelitis (ME), sometimes known as Chronic Fatigue Syndrome, is a debilitating neuro-immune disease which causes symptoms including profound fatigue and cognitive impairment.

It can strike people of all ages and devastate previously healthy and active lives, but despite this there is no effective treatment available on the NHS and no ME specialists in Scotland's hospitals.

Campaigners want MSPs to ask their local health boards to fund a specialist ME nurse and press for more education and training on the illness for healthcare staff.

Speaking at the reception via Skype, Ms Brea said: "The debate over whether this illness is physiological is over.

"But despite this - and this is true in Scotland, it's true across the UK, it's true all around the world - we've done almost nothing to invest in the research and care of this patient population due to the stigma, the misperceptions and the invisibility of the disease."

She urged MSPs to "to help us end the the silence and the invisibility, to help us bring our stories into the light".

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Kim Gurav, from Edinburgh, has had ME for around three years, and helped organise a series of screenings of the film throughout the capital despite being housebound.

The 34-year-old, who had to give up her job in HR at Edinburgh University, said a lack of information, support and advice precipitated a deterioration in her condition and left her feeling "entirely abandoned" by the system.

She said: "Sometimes it feels like I've lost almost everything.

"If I had had any help or support and had been told how to pace, how to handle my symptoms, I could have still had a life.

"I could have been at 70% of a healthy person instead of being probably at 5% if I'd had early advice and information on ME and that is not much to give a patient, that really isn't that difficult."

She believes Unrest could prove a turning point in changing public attitudes towards the illness.

"The film has given me so much hope, and hope can be in very short supply at times.

"Jen Brea is speaking up on our behalf and through this film telling the story of thousands of us who suffer."

Janet Sylvester, whose daughter Emma, 24, has a severe form of the illness, organised the Holyrood event with a group of people with ME.

"I think what Unrest has done is it has really provided a platform for people like us to do something different and give a focus to the campaign and see what we can make happen."

She said there had so far been a very positive response from MSPs.

"There is a lot of interest in finding out what can happen next so that's been very encouraging.