Leeds charity raising awareness of sleep problems facing people with multiple sclerosis
People living with multiple sclerosis are facing complications caused by fatigue and insomnia which are not always properly recognised by medics, a charity has warned.
Shift MS, a Leeds-based support organisation which runs online forums where people with the condition can share their experiences, is planning to make a film to raise awareness of the issue.
The charity, founded by George Pepper, of Headingley, who was diagnosed with MS in 2004, is inviting people affected by disruption to their sleep patterns to take part.
Mr Pepper explained that there were different causes of ‘primary’ and ‘secondary’ fatigue in people with MS, an autoimmune condition which disrupts nerve signals from the brain.
He said: “It’s something we hear a lot about on our forums, people talking about the issues they are having with lack of sleep. Primary fatigue is caused by MS. The nerve messages have to work harder and it takes more energy.
“Secondary fatigue is caused by the effects of living with MS. Issues with pain and depression can lead to fatigue, and people living with bowel dysfunction having to get up in the night.”
Shift MS hopes to help those with the condition understand their sleep-related symptoms and discuss them with their doctor.
Mr Pepper said: “Often it goes unrecognised by healthcare professionals. But it heightens the impact of other symptoms.
“It’s about people with MS realising they are not alone with these issues, and that they should communicate them with healthcare professionals.”
More than 100,000 people in the UK have MS. The condition causes the body’s immune system to attack part of the brain and spinal cord called the myelin sheath, which surrounds the nerves and helps electrical signals travel around the body. Eight out of 10 people with multiple sclerosis have relapsing remitting MS, in which symptoms like pain, muscle spasms and problems with balance can come and go.
Primary progressive MS causes gradually worsening symptoms without periods of remission, although there can be periods of time when the effects stabilise.
While advances have been made in treatment the physical symptoms of MS, sleep problems and fatigue, along with related mental health issues, are not always understood, Mr Pepper said.
He added: “We are seeing the benefits of treatment. But there are mental health issues.”
People who want to take part in the film are invited to get in touch via the shift.ms website.
Mr Pepper said: “We want to capture people’s stories an bring them to life. We want it to be an honest portrayal of life with MS.”