BELLE and Sebastian frontman Stuart Murdoch will call on people to “make a noise” to help improve the lives of at least 20,000 Scots living with myalgic encephalomyelitis (ME).
The lead singer of the indie band, who has lived with the condition most of his adult life, will join campaigners in Edinburgh to mark ME awareness day on Saturday.
ME Action Scotland wants the Scottish Government and NHS Education for Scotland to provide funding for biomedical research into ME and commit to the education of healthcare professionals about the little-understood condition.
ME, sometimes known as Chronic Fatigue Syndrome, is a debilitating neurological disease which causes symptoms including profound fatigue and cognitive impairment and can strike people of all ages, devastating previously healthy and active lives.
Speaking before the event, Murdoch said: “So many people with ME are housebound and these are people that we really have to make a noise for.
“I was thinking the other day there used to be a charity, I think it was Christian Aid, and they had a motto – ‘we believe in a life before death’ – because of some of their causes, and I think that would be a good motto for ME.”
Carol Monaghan, MP for Glasgow North West, will also speak at the event after organising a Westminster debate on ME in February.
She said: “This is a great opportunity for those living with ME to raise awareness of the condition, and I am pleased to be able to contribute.
“I have visited a number of constituents living with ME, and I have been shocked by the lack of assistance available – the main carer is often an elderly parent and welfare support is usually minimal.
“There remains a huge need for quality research and education amongst the public and medical practitioners alike on the reality of living with ME and the best courses of treatment.
“If things are to improve, this research must be given proper funding, and any future guidelines must be drawn up through listening to people living with ME.
“I made it clear that February’s debate was only the starting point and I will be pushing for a wider debate in Parliament. Protests like Millions Missing will ensure that we keep this issue alive.”
The Edinburgh event is one of more than 100 being held across the world which are supported by the charity #MEAction.
As many with the condition are too ill to attend, they will be represented at the protest by empty pairs of shoes sent to symbolise the Millions Missing – those with the condition who are unable to live a normal life.