Stuart Murdoch talking openly about his experiences of M.E., Los Angeles, August 2015

“This is a pop band that sprang out of infirmity.”

Stuart Murdoch in a great article from The Guardian December 2014

“Critics love Belle and Sebastian, they always have.”

Daily Post September 2015

The Solve ME/CFS Initiative has managed to produce some truly excellent webinars and video presentations in recent years, but managing to track down and interview at length the founding member and lead singer of Indie band ‘Belle and Sebastian’ for an honest and frank exchange about life with M.E. was in my opinion right up there with the best of them.

When the interview was finally published last Sunday it proved a very welcome surprise to an otherwise expectedly dull morning, and judging by the reaction from my own Twitter followers it was also a memorable event for them and their own followers as well. Indeed it generated far more impressions* on Twitter as a result than anything else I have posted before.

Stuart Murdoch is based in Glasgow and is lead singer and founding member of popular Indie band Belle and Sebastian (pictured below). He has been engaged most recently in a heavy touring schedule that took him to America in the summer. But it was while on tour in Spain a couple of years ago that he experienced a relapse in the ME he originally developed after leaving college when he was eighteen; and which prompted him into talking so openly about life with the disease:

“I feel a bit guilty because I haven’t spoken up about ME for years and years but… It’s quite freeing to be actually able to talk about it. I kept so much of it secret for so long.”

“What happened is what always happens to me, I get a virus. I was in Spain with the group there was work as well and I’d been quite busy. It had been a busy work period and my child had just been born and I went off on tour and I got what seemed like food poisoning, but it ‘transmuted’ into a virus…”

As is often the case – based on my own experience and speaking to others as well as following the research – Stuart had been fit and healthy before being originally knocked flat by ME and can clearly remember what it felt like before his illness struck. He had actively competed in athletics as well as running several marathons. But this all came to a sudden halt and left him unable to do very much at all:

“There was a period of about seven or eight years where I couldn’t work – from the late eighties to the mid-nineties – I was really poorly and these years were a massive vacuum…”

“It’s not a ‘treatable’ disease in Britain and so we fall back on ourselves, we fall back into little groups; we find each other. And the language that we talk is not understood by other people and so you become entrenched…”

If my own experience is anything to go by then I think we all at some or various points will try and find something (anything) that we can do which will perhaps help to anchor us or even give us some purpose in those dark times of despair and helplessness. Not everyone is able to achieve this of course or not easily or not at all times, but for Stuart it was slowly learning to write music and express himself through lyrics; lyrics that proved cathartic and fortunately and eventually led to his career:

“After a few years of nothingness I found that I could write music especially to describe circumstances I was in. It was cathartic. It was a thing that I could do. And then it became a job but the job was based around me. I selfishly built this career around the limitations of what I can do.”

When those songs were ultimately released they would capture some of the essence of his experience of ME, chronic illness and the suffering that comes with it.

One of the points that I couldn’t capture on Twitter but referred to because I do think it important was Stuart’s reference to the gay community and how in several of his earlier songs he had created gay or lesbian characters. He explains that this was – and I am paraphrasing here – because had he used characters with ME there would have been less understanding; ME was and remains relatively unknown and was perhaps “not dramatic enough” in the minds of the public to really make them understand. But the ME community and the gay and lesbian communities he felt had a lot in common, at least at the time and maybe still to this day:

“…ME people are marginalised, ME people are… I was a second-class citizen, I sometimes still feel like a second-class citizen certainly in Britain. We were second-class citizens. So I felt it was easier sometimes to use the metaphor of gay or lesbian because ME is too difficult to talk about or it’s not dramatic enough…”

I posted well over twenty quotes from this twenty minute interview on Twitter last Sunday, but there was a lot that I missed. Listening again I still find it as incredibly honest, as moving and as inspirational as I did the first time round. This is a very personal account of M.E. and I think many will find at least something here with which they might associate. OK so Stuart and his band have become famous but that is not to say his experience was or remains any less real. Our own experiences and what we might want to say or how we choose to talk about them and the disease itself might differ, but I think we can all respect each other’s views. I really hope you are able to listen to the interview – even in bite-size chunks.

Let me leave you with one of the tracks from Belle and Sebastian’s current album. It is Nobody’s Empire and whilst there are various places on the internet that will attempt to interpret lyrics, for me it is a story about being rescued from a time of deep despair; which is certainly a place I have endured and often wished to be rescued from.

“There’s a year of my life bottled into every line,” Murdoch says. “When I wrote it I was fighting the same demons. I wrote the song to cheer myself up.”

The Guardian December 2014.

Nobody’s Empire, Belle and Sebastian, December 2014

Click to Play

A sincere thank you to Stuart Murdoch who I don’t believe has ever spoken in such a way and at such length before, to Belle and Sebastian for producing such great songs and I understand brilliant concerts; and of course to The Solve ME/CFS Initiative (for tracking Stuart down and securing the interview).

Note: All quotes taken are my own and I probably made some mistakes. Blame the M.E. and not me please. Interpretations are of course my own – if you have different ones then please share them below. And also please take into account that Stuart has M.E. I think you’ll agree it is often hard trying to express ourselves verbally even at the best of times.

* Impressions are the number of people who have seen a tweet in their feed, either from following the original poster or following someone who retweeted a tweet.

Best wishes

Russell Fleming (@Firestormmer)