Leeds chronic fatigue sufferer: ‘No one really knows what causes my illness’

SPEAKING OUT: Hattie Hodgson-Crome, who is sharing her experience with chronic fatigue syndrome in the hope of raising awareness.
SPEAKING OUT: Hattie Hodgson-Crome, who is sharing her experience with chronic fatigue syndrome in the hope of raising awareness.
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Feeling extremely fatigued, having time off work, spending weeks in bed and battling for a diagnosis to make professionals accept it.

Those are the symptoms of chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME), a long-term illness that can cause extreme tiredness.

“Getting the diagnosis was such a mixed feeling. On the one hand, it was a huge relief,” says Hattie Hodgson-Crome, from Kirkstall, who suffers from ME.

“I knew that I wasn’t just pathetic, there was something going on that was medically recognised.

“On the other hand, I knew that no one really knows what causes ME, and that there are no real treatments at present.

“I knew that an ME diagnosis was one that meant that I was likely to be ill, and limited, for many years. Possibly my whole life.”

The chronic neurological condition affects around 250,000 men, women and children across the country.

Many who suffer from the illness face isolation, stigma and discrimination as people still struggle to accept the true impact of ME, according to the Action for ME charity.

Mrs Hodgson-Crome, 26, is today bravely sharing her battle with the illness as part of ME Awareness Month, which is raising awareness of the condition.

“I was spending whole weeks in bed, and having so much time off work,” she says.

“It felt like my body was fighting against me – my brain wanted to continue as my normal, busy, super-active self who did a lot, exercised a lot and achieved a lot.

“But my body just wouldn’t let me.”

People with ME can experience severe, persistent tiredness associated with the body’s inability to recover after using energy.

This leads to a flare-up in symptoms, including chronic pain and difficulties with concentration, thinking and memory – known as “brain fog” – as well as problems with the nervous and digestive system.

“Pain, post-exertional malaise and brain fog are my most challenging symptoms,” Mrs Hodgson-Crome says.

“I am unable to do any exercise, which is particularly painful as, until I became really ill in autumn 2015, I had taken a ballet class once a week from the age of three. I am so sad that I cannot dance at the moment.”

Around a quarter of people with ME remain bed or housebound.

For Mrs Hodgson-Crome, she has managed to hold down a part-time job as a press officer for Epilepsy Action and has support from loved ones.

“I’m not able to do much round the house,” she added.

“Some days, my husband has to help me do everything – from washing my hair to getting me into my pyjamas.”

‘There is no cure for condition’

To cope with the symptoms of ME, Mrs Hodgson-Crome balances what energy she has with regular rest periods.

This approach, known as pacing, is used by many to manage the condition. There is currently no pharmacological cure for ME. Mrs Hodgson-Crome urged others to be honest about the condition with their loved ones.

“I want people to be able to understand what is going on with my health so that they know why I might be quiet, less active or less supportive than I was before,” she said.