鲍鱼tv Scotland - 鲍鱼tv Scotland - Living with ME is 鈥榣ike being stuck in a waiting room鈥�, says Belle and Sebastian鈥檚 Stuart Murdoch

Living with ME is 鈥榣ike being stuck in a waiting room鈥�, says Belle and Sebastian鈥檚 Stuart Murdoch

26 January 2018

Belle and Sebastian’s frontman might look like the picture of health when he’s performing in front of thousands of fans.

Sometimes it鈥檚 like the worst hangover you鈥檝e had, and you鈥檙e going to have it all day and all next week as well

Stuart Murdoch

But for most of his adult life Stuart Murdoch has been living with Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS).

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“Sometimes it’s like the worst hangover you’ve had, and you’re going to have it all day and all next week as well,” he said.

“And then sometimes it’s like the day before you come down with a bad flu. That sort of feeling that persists and persists”.

Touring can be strenuous and of how Belle and Sebastian cope with his needs.

“We have a schedule that works for me. I can go away and rest all day and have the performances in the evening, then immediately rest.”

However, the band have in the past been forced to cancel a tour of mainland Europe due to his ill health.

There are estimated to be a quarter of a million people with ME/CFS in the UK and potentially 17 million worldwide.

Dr Charles Shepherd of the ME Association, , had this to say about treatment of the illness:-

“A major stumbling block with getting effective treatment for these patients has been the NICE guideline – [NICE is the body that decides which treatments should be available on the NHS] – on this illness which came in in 2007. So we’ve been stuck for almost 10 years with a guideline which many of us have felt – certainly parts of it, key parts of it, as being unfit for purpose. Because it has relied really far too heavily on advising that people should be directed towards Cognitive Behavioural Therapy and graded exercise and really very little advice on symptom management.”

Following a recent public consultation, NICE has begun on the diagnosis and management of ME/CFS.

But while this takes place there are patients desperately in need of solutions.

“Think about a waiting room full of people in hospital,” said Stuart.

“People with all the other conditions get called to the doctor because there’s a pathway from which to proceed. Whether people get better or don’t, there’s a pathway.

“But the ones left in the waiting room are the ME people because the doctors just don’t know what the pathway is, so there’s no way to proceed."

Stuart continued, “The key thing is with ME people or with chronic fatigue people, is that it’s absolutely a physical thing. These people are ill. They need to be believed and they need to be helped".

Pennie Latin presents a story of confusion, misunderstanding, misdirection, misdiagnosis and misery.

(鲍鱼tv News, 18 May 2018)

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