Ahead of an event in Durham to raise awareness of ME, Hannah Davies spoke to one young sufferer and her family

HOPE Simpson is a 16-year-old with big dreams of becoming a photographer. But despite being clever, talented and dedicated, she’s continually frustrated by the limitations of her body. On a bad day Hope, of Bishop Auckland, can only lie down in bed. Her mother Catherine, 45, has to wash and dress her – and even holding a conversation can exhaust her.

She is one of the estimated 12,000 people in the North-East to suffer from Myalgic Encephalopathy (ME), a devastating neurological disease which can leave sufferers bedbound, unable to perform simple tasks and at times unable to communicate with their loved ones.

Despite the inevitable exhausting effects of our conversation Hope, together with her mum, a part-time school chaplain at St Anne’s CofE primary school, Bishop Auckland, has agreed to speak to highlight ME North East’s event in Durham on Saturday for International ME Awareness Day.

Hope and her family, brother Jacob, 13, a pupil at St John’s Catholic School, and dad Michael, 48, a teacher at Durham Johnson School, are backing supporters of ME North East to raise awareness of the sufferers in the region and the “missing millions” who suffer from severe ME across the globe.

Catherine says: “ME North East has helped both Hope and I so much. ME is such a neglected illness, it is outrageous. In recent years the chronic fatigue service regionally has been cut. So it is so important to fight for the support people need and aren’t getting.”

Hope’s journey with ME began when she was just 11 and was diagnosed with complex regional pain syndrome (CRPS) after a minor accident left her in unbearable agony. A year later, still recovering, she attempted to restart school.

She recalls: “I definitely wasn’t back up to health. We thought it was tied to the CRPS and not getting mobile again. But I was feeling really off, tired and spaced-out, then one of my hands went completely numb and I didn’t know why.”

Catherine takes up the story: “We didn’t know what was happening but at the same time Hope was anxious to get back to school to make up for lost time.”

She pauses. “If we’d known then what we know now...” Catherine trails off, “over exerting yourself with ME can make things much worse and every time she tried to push through it just got worse. It wasn’t until a few months later she was tested and her results showed she’d had glandular fever we realised this wasn’t going to go away. Something was seriously wrong.”

Hope had to stop attending secondary school and receive home education as the crushing fatigue made it impossible to manage lessons. Friends began to slip away and, as with many ME sufferers, the effects of the illness were made worse with by the lack of knowledge of those around them.

“It was a really hard experience because so many people dismiss it,” Hope says. “They don’t understand why you can’t ‘push through’.”

Catherine adds: “People were making assumptions about the sort of family we are asking ‘is it anxiety? Hope was enjoying school it wasn’t about that.

“She’s got so many things she wants to do, but her body simply won’t play the game.”

IN recent years Hope has learnt to manage the illness better through a system known as “pacing” where ME sufferers are very careful about the amount of activity they do so they aren’t pushed into a relapse.

She had to take reduced subjects in her GCSEs and wants to enjoy the things any 16 year old enjoys but constantly has to hold herself back. She can’t go out with her friends and when leaving her house she has to use a wheel chair to conserve energy.

Hope says: “In September I attempted to go to college and I just wasn’t ready to do that. I’m trying to learn to listen my body and how to manage the activity.”

Catherine says: “On a worse day she’s always got out of bed, but I’ve had to help to get her dressed and washed – getting dressed would be like doing a marathon.”

Hope finishes: “This is a long and hard journey but sometimes life is still wonderful. But on a good day sometimes I struggle the most because when I’m feeling good I want to do absolutely everything – but I know I can’t and that’s often the hardest.”

What is ME/CFS?

ME (Myalgic Encephalopathy), also known as Chronic Fatigue Syndrome (CFS), is a devastating neurological illness

ME North East supports people with ME/CFS and their families from the Scottish Borders to North Yorkshire and Cumbria.

It is not known exactly what causes ME, but research has revealed a number of abnormalities in ME sufferers. Findings include evidence of persisting viral infection, abnormalities in skeletal and cardiac muscle structure and function, and evidence of damage to nervous tissue.

ME North East will have volunteers on hand to speak to people about the illness and its services on Saturday in Durham Market Place between 1pm and 3.30pm.

For more information see www.menortheast.org