There’s no doubt he’d balk at the idea of being described as a spokesman for a ‘lost generation’ but Belle and Sebastian frontman Stuart Murdoch is more than willing to lend a helping hand to people living with Myalgic Encephalomyelitis.
Murdoch, who has coped with the illness, better known as ME for the best part of 30 years is helping the Millions Missing Edinburgh 2018 event on the Mound tomorrow.
The 49-year-old from one of Scotland’s most successful bands will address a crowd of campaigners, many of whom have been struck down with debilitating chronic fatigue.
Murdoch told The Scotsman from Australia where the band have been on tour, that the illness is a “living death” for many and more needs to be done to raise awareness and help the thousands of Scots with ME.
He will address a group of campaigners from #MEAction Scotland, which held a stunning protest outside the Scottish Parliament last May that included hundreds of pairs of shoes and trainers left outside.
Murdoch, who has been living with ME since his student days, went through a period of eight years when he was severely ill and at one point was admitted to hospital.
He says: “I think this is probably the best way to raise awareness. Even the fact that you’re calling me and ran a story last year is a big deal.
“In my experience it was difficult to know what to do – the most we could do was get together in small groups and console each other. That’s what we did back in the day and it did feel like it was just individual voices crying in the wilderness.
“Whoever has corralled everybody into this movement it’s ideal – what else could ME people do but have a sit in or a lie in?
“The sight of people lying down in public will offend some because they can’t stand it, but what they have to realise is that these people are not putting it on – they’re like that all the time.
“The reason that they’re out there [protesting] is because there’s nothing else they can do.”
Murdoch says we have moved on from the days when ME was labelled ‘yuppie flu’ a derogatory term first coined in the 1980s when young professionals were being struck down with the illness.
Although he is at pains to point out that he understands why those not living with the illness struggle to comprehend the extent it can floor people given that there are no obvious physical symptoms.
He adds: “It’s kind of understandable why people treat ME in that way – there’s no badge, there’s no T-shirt, no crutch, no dark glasses – there’s nothing to say that there’s anything wrong with us.
“When we say we’re tired or we’re ill people say ‘oh I feel tired too’ it’s completely understandable, it’s human nature. What we used to do 20 or 30 years ago to avoid that sort of thing was simply not to tell anybody – even your friends didn’t understand. People either get it or they don’t.
“I first got it in 1990 and had seven or eight intense years where your whole life changes and everything else goes out the window.
“Everyone will be different – it’s so mysterious for some people that it can start with a virus and just absolutely floor you.
“Quite often, for me at least, at the start it came from a background of being under great stress for a long period of time and I think that undermined my health and let ME in.
“Everybody’s stressed at some point or other – it wasn’t till afterwards that the viruses started coming in – a simple cold can put you on your back for a couple of months.
“It just floors you – everything I do in my daily life is predicated around staying healthy.”
Murdoch, who believes the ME community should adopt the motto “we believe in life before death”, says the first time his illness was taken seriously was when the band had to cancel a tour three years ago.
He adds: “In my experience the only time that chronic fatigue was officially recognised in my lifetime was when we [Belle and Sebastian] had to cancel a tour and then the insurance people came in and said I had a previously existing illness and they wouldn’t pay.
“It just shows you human nature – I’ve had this illness for 30 years, with people turning their backs and looking up their sleeves and looking the other way and the only time it was officially recognised was about three years ago when we had to cancel a tour and suddenly it was all very official.”
The songwriter says that ME is the inspiration behind a lot of his songs and is the reason why he writes and started music.
“Particularly there’s a song called Nobody’s Empire which was written a couple of years ago and pretty much every line to my mind describes an episode that happened to me or my close friend during our intense early years with ME.”
Murdoch, a father-of-two, says he has learnt to cope with the condition by living in “ways other people would find strange” and would like to see more done by the medical profession.
Campaigners have been calling on the Scottish Government to review the level of support for those with ME in Scotland, with a petition lodged at the Scottish Parliament having attracted more than 3,700 signatures.
Murdoch says: “For around 25 per cent of the people with ME it’s a living death and people have to understand that.
“There’s nothing for these people, there’s no hope of a cure – all that they can do is try to cope and stay positive.
“How do you say that to somebody?
“That’s them in their beds, no energy, feeling ill and it could be a young person and then you’ve got all these secondary things coming in with not even death at the end.
“I know that sounds a morbid thing to say but there’s no finality, there’s no pattern, there’s no arc.”
He adds: “I would like to see an official recognition of ME as a condition – these people are ill there’s no doubt about that.
“It has to be written statute somewhere, that this is how they get treated – the same as every other ill person and some specialists for Scotland would be amazing. They just don’t exist.
“You can pay a lot of money and see someone in America but what’s that to normal people?
“A clinic in Scotland would also be amazing.”
For details of the petition, see www.parliament.scot/GettingInvolved/petitions/PEO1690