Julian Watts 33, was an active and physically fit 12-year-old growing up in Southport when he was diagnosed with Myalgic Encephalopathy, more commonly known as ME, a condition that affects approximately 250,000 people in Britain. ME, or Chronic Fatigue Syndrome (CFS), is difficult to diagnose as it displays similar symptoms to several other medical conditions such as leukemia, lupus and coeliac disease. Consequently, ME is diagnosed through a process of elimination, a process that can take some time to complete. In Julian’s case it took eight months.
A competing gymnast, Julian also played rugby, cricket and football when he contracted glandular fever and was treated with heavy doses of antibiotics. On his return to school Julian threw himself back into his active lifestyle, only to find that he could no longer cope with the physical strain and would pass out. Unable to recover, Julian would spend weeks in bed, sleeping up to 20 hours a day.
“I was very physically weak, I had no energy”, says Julian “There were no nice guidelines back then”, he adds, “My GP offered me amphetamines, which I wasn’t happy with”. For almost two years, Julian hardly attended school, in addition to feelings of complete physical exhaustion, he found difficult to concentrate and often felt out of step with everything and everyone around him. By the time his GCSE exams came around, his condition had plateaued and with support from the school he was able to achieve good results.
“Once I conceded that sports was something I probably wouldn’t be doing for a while, life became manageable again”, says Julian laughing, “It was a matter of defeating my own stubbornness, I suppose…” Julian found himself making a compromise, he was well enough to attend school and engage in less taxing activities but he still found it near impossible to concentrate, struggling to find words and constantly felt a little “out of it”. As a result, Julian became more introverted, read a lot of books and started socializing with people older than himself. “I was quite arrogant, thought I knew more about what life was about than the kids at school, wiser in a way”.
Music, which had been Julian’s secondary interest before his ME, now became the focus of his life, “Playing guitar was something I loved to do that wouldn’t wipe me out”, he says, “The ME has definitely turned me into a different person… Although I suppose it is all conjecture…”
Julian’s ME affects him every day, it influences every choice he makes and it has inevitably had an effect on his relationships with loved ones. “My mum could not tolerate illness in the house. Once, she threw a bucket of water over me in bed. I was too exhausted to get up, so I just lay there in a soaking wet bed until my dad came home”, says Julian and quickly adds, “She’s got better after her mother died, less aggressive”. It was mostly Julian’s father who provided the comfort and support he needed growing up, “He’s a much softer touch…”
Despite achieving impressive A-level results, Julian did not go to university, instead he moved to Liverpool to pursue music. “When I’m ill I can’t play well, I just go through the motions”, he says. “Everything gets heightened, you know. My ears and eyes feel like they’ve been turned up, light is blinding and sounds are deafening”.
With his senses heightened, Julian explains that he can become very irritable and finds human interaction almost painful. “I suppose it’s difficult to understand for a lot of people. They’re just trying to help”, he says, “I just want to be alone when I feel like that.”
On “good days” Julian is an active and dedicated musician and motorcycle enthusiast, he is not to keen to discuss the “bad days”, and only says “I don’t even get up to eat.”
Julian does not suffer from the muscular pain which plagues many of those with ME, “I’m lucky that way”, he says as he pulls out a thick folder from his bookcase, “I’ve done a lot of research, and I’m really up for trying any type of treatment that comes along.” He tells me that he has tried every treatment he has come across in the last 10 years as he flicks through his folder. “This one was the worst one”, he says after a while, “It’s a series of viral injections, they’re meant to ‘reboot’ your immune system. Apparently it works in 35% of cases. I just got worse!”
Recent experiments scanning blood flow through the brain have shown that ME/CFS uniquely suffer from decreased blood flow through the brain stem (hypoperfusion). However, these scans are not widely available and their viability will need to be confirmed by other research groups before they can be considered a diagnostic aid. “I’ll be their guinea pig until something works!” says Jules with a defiant smile.
Mia Tagg 2009®