Alice Garrett-Jones - photography, illustration, multimedia storytelling



Shannon was 5 years old when she first started displaying symptoms. It took another 3 years before she could get a diagnosis of Myalgic Encephalomyelitis (M.E), a severe, complex neurological disease that affects all body systems. The symptoms of M.E differ greatly from person to person, making the illness all the more difficult to recognise. They can include muscle weakness and pain, severe 'flu-like' symptoms, and abnormal and extreme exhaustion unrelieved by sleep. Symptoms can also indicate a disturbance in brain function, for instance loss of concentration, short-term memory, dyslexia, nausea, balance problems, sensitivity to noise and light, and sometimes problems with bladder control and bowel disturbance. Patients might experience emotional symptoms, including depression and mood swings, which can confuse diagnosis. Since there is still no specific diagnostic test for M.E, sufferers are often misdiagnosed with Chronic Fatigue Syndrome (CFS) because of commonality in symptoms. Researchers have not yet managed to determine the cause of M.E, however many cases indicate that the onset may have been triggered by acute infection.

M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide. 

Click below to listen to Shannon & her mum talk about the impact M.E has on their lives

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Shannon (left) and her identical twin Stacey (right) love to reenact scenes from West Side Story, playing the roles of Anita and Maria. Singing is one of the many things M.E stops Shannon from doing. Since singing is a high energy activity, she can only do it for a brief period before having to compensate with time resting.

On her good days, Shannon's illness is indiscernible and she is still able to play games with her siblings and do all the things other children do. However, if she does too much and exhausts her energy resources, she pays a price.


In the first few years following her diagnosis, Shannon's M.E was classified as severe. It was calculated that she had only three and a half hours of energy to use in her body in a day. For most of us, eating or having a bath are a time to relax. For those suffering severe M.E, dressing, eating, washing and all of the routine daily activities are extremely draining. In her worst time, Shannon was being sick up to 50 times a day. They became trapped in a vicious circle: if her mum tried to bath her to clean her up, the exhaustion of bathing would cause her to be sick again.

Since her diagnosis, Shannon's symptoms have continued to evolve, making it harder for those around her to recognise the signs of relapse, and harder to predict. Now at the age of 10, Shannon's M.E is classified as moderate and it is estimated she has nine and a half hours of energy to use on an average day. However, she still experiences relapses and suffers from vomiting, headaches, pain throughout her body and flu-like symptoms.


After watching Aladdin for the first time when she was unwell, Shannon began collecting Jasmine dolls. She took them with her to all of her medical appointments and blood tests so she could cuddle into them when she was scared. Jasmine is her 'worry princess'.

Getting a diagnosis of M.E was a long, laborious ordeal which took 3 years of trips to the doctors and the hospital for MRI scans and never-ending blood tests. The more the tests came back clear, the more confusing and concerning it became for the family, not having any answers. Baffled doctors turned down a psychological route, suggesting Shannon was pretending, until her eventual diagnosis at Bath hospital.

Due to the mystery and complexity of this illness, many misunderstandings and myths have become rooted in common belief. The biggest of these beliefs is that M.E does not exist. Often M.E is simplistically associated with severe fatigue, so the multitude and severity of symptoms go unacknowledged.



"I would like to be an M.E doctor because I know what it's like to try and get a diagnosis for M.E and I know all the signs. We've learnt a lot about M.E" - Shannon

Shannon is now being homeschooled by her mum and attending school one day a week, if she is well enough. Travelling to and from school is a constant energy drain, meaning she would frequently be sent home sick. M.E has caused a serious disruption to her education.

Shannon has a wheelchair to conserve her energy going to and from school, or on outings. Now she is being homeschooled, she is trying to train Simba to walk beside the wheelchair so that he still gets a walk.

One of the hardest things the family have had to come to terms with is the loss of normality at the hands of M.E. The unpredictability of the illness makes planning an impossibility, not knowing when it will next strike. Everything has to be taken day by day, and planned according to how well Shannon appears. For every 30 minutes of high energy activity Shannon does, she has to compensate with 30 minutes of resting.

Colouring is a low energy activity, whereas drawing would be high energy due to larger cognitive demands. Watching TV also exhausts Shannon's energy resources, unless it is something she has seen many times before. The family have to constantly think of every activity in terms of energy usage. Every day is a struggle to get the balance between keeping Shannon healthy, but not letting the M.E completely take over her childhood.

One of the common symptoms Shannon experiences takes her into 'baby mode', a fogging of the brain which causes her behaviour, speech and movements to revert back to that of a young toddler. When this happens, her twin sister Stacey feels disconnected, as it makes her feel as though they weren't born together. 

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