The Edinburgh girl I’m interviewing today doesn’t want you to feel sorry for her. She wants you to feel angry. Emma Shorter, 23, is one of Scotland’s 21,000 ME sufferers. ME stands for “myalgic encephalomilitis” and is a systemic neuro-immune disease. The lazy name it’s been given is chronic fatigue syndrome. In the 80s, it was mockingly called yuppie flu in the media and sufferers were dubbed skivers.
Emma had never heard any of these terms until she was 19 and had completed three months of her first year at St Andrews University. All her life she’d been active and healthy. Aged nine, she was climbing Munros. She swam, skied and sailed. She played hockey, started learning shinty and played the violin and the clarinet. When she turned 18, she volunteered for Project Trust and spent a year teaching English in Sri Lanka.
But her body began to change. One morning she woke up to find she couldn’t get out of bed. She had burning muscles and a raging thirst. She could see a glass of water on the bedside table. She wanted to reach out and bring it to her lips but she couldn’t move her hand. Soon afterwards she had to stop studying. In fact she had to stop all her activities – anything that took up her physical or mental energy left her unable to move.
If she goes out, she needs to be pushed in a wheelchair or use her mobility scooter. ME comes with a nasty range of intensely unpleasant physical symptoms. Burning pain and spasms in your muscles when you move. Sudden, slow collapses when you’re active. Brain ‘freezes’ and disjointed speech. And an overwhelming fatigue that traps you indoors and in bed, which is where I’m interviewing Emma now.
At times during our conversation, I see the muscle spasms, the struggle to find the words, the drift of fog into her mind. But mostly what I see is a bright, cheerful girl with a beautiful smile who is determined to make the best of things – not for her own benefit but for thousands of other ME sufferers in Scotland and around the world.
“Can you describe your typical day with ME, Emma?” I asked.
“I’ll explain with spoons,” she said. “Can you pass me them?” I hand her a jingling bundle of ten big tablespoons. “An illness that’s all about energy levels is really hard to describe. If you have ME, you wake up with a strictly rationed amount of energy. Once you’ve used up your day’s supply, that’s it.
“So I might get dressed, that’s one spoon. Then I’ll go downstairs and make my breakfast and eat it. That’s another spoonful. If I decide to shower because I’ve got an interview with you later on, that’s one more spoon. The more spoons I use, the less energy I have to do things, so I have to rest. Resting doesn’t give me any new energy. But if I just kept going, I’d need double the amount of energy just to do something simple like make lunch – it would use up two spoons of energy instead of one.
“If I went out with friends, I’d need a spoon to get ready, then a spoon to deal with the noise in the restaurant. Every hour with my friends would use up two or three spoons. If I use up 12 spoons in a day, I’m two spoons down the next morning when I wake up.” The ironic thing about ME is that to date there isn’t any magic spoonful of medicine that will cure it. To make matters worse, the medical establishment in Scotland seems to be unforgivably ignorant on the subject.
Emma said: “When I was taken to the Western General in 2015, the doctors and nurses had never heard of ME.”
I tell her I find that very hard to believe in a country like ours, renowned for its pioneering medical expertise. Emma protested. “It’s true! YOU actually know more about ME than any of the health professionals I’ve spoken to.” (I’m gobsmacked. I only had time to do a couple of hours’ research before met Emma.)
“I finally saw a neurologist. She was the same age as me. ME has been a recognised neurological illness since 1969 but this woman had never heard of it. She told me that all my symptoms must be a manifestation of some forgotten childhood trauma.”
Emma explained how psychological explanations of ME like this have set biological research back by decades.
“There’s a man called Sir Simon Wessely, who’s Professor Of Psychiatric Medicine at King’s College in London. He believes ME is a psychosomatic affliction, in other words it begins in the patient’s mind. He’s devised a treatment that combines Cognitive Behaviour Therapy and Gradual Exercise Therapy.
“He and a small but highly-organised group of English psychiatrists have got their hands on 90 per cent of all the funding for the disease. But there’s now a huge body of research evidence that suggests the opposite; that ME is a multi-system disease not a psychiatric illness and that asking ME patients to exercise is counter-productive and can actually cause their condition deteriorate.
This ‘psychiatric’ interpretation of the illness makes it much harder for patients to claim benefits.
“What’s it like getting disability benefits?”
Emma said: “The process was the most dehumanising experience I’ve ever had to endure. People with ME go through tribunal after tribunal. The tests the DWP apply to determine whether or not you’re fit to work take no account of the nature of the illness. Although it’s rare, people do die from ME. When they do the autopsies, they find evidence of damage to the dorsal root ganglion in the spine.
“ME sufferers are six times more likely to commit suicide. When you get ME, it doesn’t matter what you once were. You can’t do it any more. Dancers can’t dance, accountants can’t count, bakers can’t bake.”
Sadly, it seems our politicians can’t help. In 2011, the Scottish Government commissioned a report designed to make things better for those with the disease. There were more than 30 recommendations including this one: “It is recommended that a dedicated helpline and website provide information and support for people with ME/CFS and those who care for them be established in Scotland.”
There is still no government-funded helpline or website. Twice as many Scots suffer from ME as suffer from MS, yet the Scottish Government is pouring money into MS research while ME gets nothing.
“What would you say to Shona Robison, the Scottish Health Minister,” I askedEmma.
“I’d tell her to get her finger out. There are 21,000 Scottish ME patients who are still being told by their GPs to exercise – which actually makes most of them worse. I’d tell her we need the Scottish Government and NHS Scotland to fund biomedical research into ME and put some serious money into the education of our healthcare professionals. Even the best doctors will struggle to help with an illness they’ve never heard of.
“I’d also like her to come and talk to us outside Holyrood on 12 May between 12-2pm, where we’ll be staging our ‘Millions Missing’ protest. Millions missing from colleges and workplaces because they’re housebound or bedbound. Millions of pounds missing in research funding.”
If you’re too ill to be there, just send your shoes, labelled with your message, to Janet Sylvester, 12b Timberbush, Edinburgh, EH6 6QH. Or send a picture of them, with your story, to Emma at firstname.lastname@example.org