“I’m hoping that by me doing this, I’m not only helping myself but also other people in future. As soon as I was diagnosed, I said if there was any research available, put my name down.”
Research participant Val Biggs is a powerhouse of positivity despite being diagnosed with the rare muscle-wasting condition inclusion body myositis (IBM) in 2022. Although she has retired from her work in catering in schools, at the age of 75 she is still at the gym twice a week and doing physiotherapy at home, socialising with husband Alan, family and friends.
That’s not to say her IBM doesn’t affect her though. Although its symptoms have developed slowly, Val says she is getting weaker, struggling with her grip and having to take time over day-to-day tasks. That means having to plan outings and activities in advance, rather than being spontaneous.
“You just learn to adapt,” she says. “I appreciate people trying to help me, but I want to do it myself as long as I can. I’m living life as I want it – just a bit slower.”
The cause of idiopathic inflammatory myopathies like IBM is unclear. The body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune reaction. Sadly, unlike other types of myositis, immune-suppressing medications like steroids are not proven to be effective for IBM because they do not stop long-term muscle weakening and wasting.
The lack of effective treatments makes research even more important and Val, from North Yorkshire, said that as soon as she received her diagnosis, she was clear she wanted to take part in any relevant studies.
She explored opportunities through the Myositis UK support group on Facebook and also attends the charity’s annual conference, where she first met Dr James Lilleker, neurology consultant at Northern Care Alliance and a member of the Manchester Myositis Research Group at The University of Manchester.
That led to Val enrolling in a study testing an investigational drug. It’s a placebo-controlled study and Val doesn’t know whether she is receiving active treatment or a dummy version – but that hasn’t put her off at all, despite visits to Salford Royal every eight weeks.
She said: “My argument has always been that there’s no point entering a trial if you’re not going to see it through because we’ll all benefit in the end.”
Val is also looking forward to her next experience of research, with plans for a study looking at a specialised diet and exercise programme.