A VOLUNTARY-led organisation dedicated to helping people who suffer from Myalgic Encephalomyelitis (ME) has reached a milestone with their first paid staff post.
ME Support Northern Ireland was founded by Antoinette Christie in 2004, following her son David's diagnosis with severe ME at the age of 11. It became clear at the time that there was little in the way of advice, support and treatment for people with ME and support for their careers.
ME is a long-term neurological illness that affects around 10,000 people. It is similar in some ways to Long Covid and can have a serious impact on everyday life.
Common symptoms include muscle and joint pain, problems with memory and concentration, sleep disturbance, dizziness and sensitivity to light or noise. A key feature of the condition is that symptoms can worsen after physical or mental activity, sometimes hours or days later. People living with ME also experience extreme physical and mental exhaustion that is not relieved by rest.
ME affects people of all ages, including children and young people. Severity varies, with some people able to manage limited daily activities while others may be housebound or bedbound.
There is currently no cure for ME and treatment focuses on symptom management and practical support and because the illness is often invisible, many people with ME face misunderstanding, isolation and barriers to appropriate care.
ME Support NI has been based in Teach Chluain Ard on the Falls Road for the past year and thanks to recent funding secured the organisation have employed their first staff member, with former teacher Alana Isom taking up the role of Admin and Support Assistant.
Speaking to the Andersonstown News, Alana, who suffers from ME said: "I was working as a teacher. I started doing a masters degree in the evening.
"I then got sick. I was also in a car crash and I was diagnosed eventually with ME.
"I then returned to work about eight months later but I really struggled. I was living in England and moved back here.
"This is my first job in seven years since I was a teacher. I am honoured to take up the role. When you are sitting in the house, you don't feel part of life anymore.
"I was volunteering with ME Support last year and I am delighted it has turned into a job for me.
"I have been in the job for three weeks now and it is going really well. I work on Mondays, Wednesdays and Fridays, but it's flexible, so it can change depending on how things are going that day for me and how I am feeling.
"Every day that I'm due to get up for work has just been exciting because it's different."
Alana added: "I believe that being a ME sufferer myself helps me understand others. Obviously, everybody is different but you have to understand what it's like because a lot of people don't understand. Today I look fine but they don't see me maybe two days time when I'm lying in bed and can't get up because you don't leave the house those days."
David Christie said the new role will help ME Support reach more people.
"We are a small organisation trying to support people all over the North. There is very little support for people with ME through the NHS," he added.
"This is our first paid staff post at ME Support. We received a lot of advice from the West Belfast Partnership Board, alongside support from a number of local fundraisers, including Brassneck Productions.
"After more than a decade being volunteer-led, it’s a big milestone for us.
"About a third of people with Long Covid are later being diagnosed with ME because they're sort of similar conditions and that is why we've seen a massive increase in demand of our services in the last couple of years."
