A CINEMA manager from Wotton-under-Edge has spoken out about her experience with ME as a charity urges people not to ignore the illness.

Samantha Negus, 31, suffers with Myalgic Encephalomyelitis, a condition that causes debilitating chronic fatigue.

Action for ME, a charity that raises awareness of the illness, marks ME awareness month throughout May.

“I feel like I missed out on being an adolescent. I was never able to hang out with my friends, go to the cinema, date or just go into school and create those bonds that are so important as a child,” said Samantha, who has had ME for 20 years.

“I felt very isolated when I was younger as I was home-schooled and so didn't have contact with anyone my own age, aside from my brother and his friend.

“My companions were all adults and so I adapted to conversations more suited to an older audience and lacked the banter, fun and learning gained from spending time with your peers.”

People with ME experience severe, persistent fatigue associated with what's called post-exertional malaise – the body’s inability to recover after expending even small amounts of energy. Any physical or mental activity can trigger a flare-up in symptoms.

Around a quarter of people with ME are so severely affected that they remain bed or housebound.

Samantha copes with the symptoms by balancing what energy she has with regular rest periods. This approach, known as pacing, is reported by many people with ME as helpful in managing their symptoms. There is, however, no cure for ME.

“Pacing has been the most beneficial and I wish I'd had access to it 18 years ago as it would have been easier to manage my symptoms,” Samantha continued.

“ME has affected the types of jobs I can do and my ability to drive on motorways. Last year I took over the management of the Electric Picture House in Wotton-under-Edge with my partner. The flexible working has allowed for me to build a career whilst balancing my symptoms.”

Find out how you can make a difference to the lives of people with ME right now at actionforme.org.uk or call 0117 927 9551.