'No one chooses to have ME - everything changed when I became ill'
As a new study suggests that ME can be beaten through therapy and exercise, long-term sufferer Tom Kindlon says it's not that simple
Published 30/10/2015 | 02:30
Myalgic Encephalomyelitis (ME), sometimes called chronic fatigue syndrome (CFS), is a chronic condition affecting an estimated 12,000 Irish people. People of all ages are affected, with the teens and the 30s the most common ages to initially become ill.
I first became ill at 16. Before becoming ill I lived a very active life. I participated in whatever sport was going - soccer, table tennis, life-saving, tennis, cricket and cross-country running. I was also naturally academic and managed to get good results while still enjoying lots of extra-curricular activities.
All that changed when I became ill with ME.
I can remember how it happened. I developed an infection the day before going on a school trip. I decided to still go. We went to an adventure centre in the west of Ireland canoeing, hill-walking, abseiling and orienteering. It was February and it was cold and rainy throughout the trip - not the place to be when you're unwell. I was ill for some days after I came home.
I was never the same after that. Anytime I tried to play sports I felt ill afterwards. I found I was struggling to get my homework done.
I struggled on at school and then university for another four years living a hermit-like existence. I had some natural ability (I came sixth in Ireland in the Irish National Maths Contest in sixth year in school) which helped, but found I had virtually no energy for a rounded life.
I went to an orthopaedic surgeon who recommended exercise, so I started going to a swimming pool three or four times a week. I kept appearing to strain muscles so I'd have to try different strokes like back stroke with only one arm. I had over 100 physiotherapy appointments trying to deal with all the muscle and tendon strains I appeared to have. I was desperate to get back to my previous life. I thought that all I needed to do was get fit and my life could go back to normal. Things took a turn for the worse in college. A couple of hours after an exam, my throat swelled up and I could barely swallow. I developed flu-like symptoms and a high temperature.
Looking back, I'd recognise that as a relapse from the mental exertion of the exam. When I tried to go back to exercising a few weeks later, my reaction was much more severe. Even a few lengths of slow swimming led to high levels of pain the next day. I switched to walking, but developed shin splints. I developed tennis elbow in my right arm and tendonitis in my right hand. My body was falling apart. I started trying to write with my left hand but soon developed tendonitis in that. I took a year out hoping I could get back to functioning.
Unfortunately, it was not to be. I developed an almost constant sore throat. By May, I developed pain in my lower stomach, and diarrhoea.
I was referred to a gastroenterologist who after a colonoscopy diagnosed irritable bowel syndrome. This is quite common in ME but I just thought I was very unlucky to have lots of separate health issues.
Finally, by August, I started having difficulty walking short distances. I would get out of breath even from slow walking. My GP referred me to a consultant in the Blackrock Clinic, the late Prof Austin Darragh who sadly passed away earlier this month. After doing some blood tests, he diagnosed me with ME, or post-viral chronic fatigue syndrome, saying I was a classic case.
Although it may seem strange, I was delighted I now had a diagnosis. At this stage, I was reduced to lying on my bed all day. My mum, Vera, became my full-time carer. We got a stool for the shower but I found that even sitting up for that exhausted me so I was reduced to my mum giving me bed baths.
This turned out to be the most severe period of my illness. I had to ration my activities severely - for instance, five or 10 minutes of listening to some music followed by 50 minutes of rest.
I wish I could say that my health has made a dramatic improvement but sadly that's not the case. I remain housebound 21 years on, living in the ground floor of my parents' house. They had the garage converted into a room for me in 1999 and I have not been upstairs since.
I know I only have so much energy and have to be very cautious how I use it: I haven't read a fiction book in over 20 years. I use a lot of my reserves to follow the ME research literature. I'm always hoping for a breakthrough.
I have been annoyed that the illness has not got the research I feel it deserves. I believe one reason for this has been the attitude that all patients need to do is push themselves to exercise more. One example is the PACE Trial that hit the headlines this week. It found that patients who did graded exercise therapy or cognitive behaviour therapy (CBT) did a bit better than those who had no individualised therapy when they were questioned after a year.
However, this difference disappeared when they were assessed at a later point. More importantly, the improvements that have been found are almost exclusively in questionnaire scores. The people who did CBT or graded exercise were no fitter on an exercise test compared to the no therapy group. Perhaps most importantly, all the groups had similar levels of absence from work and receipt of disability payments actually increased across the groups. If graded exercise and CBT had an effect, it was marginal.
I have read of many people like me who tried to exercise and instead of helping them, their health deteriorated.
My health has plateaued, but I am grateful for the health I have. Research progress has been slow in ME. I would have hoped there would have been effective treatments for myself and others by now. The most promising lead is possibly Rituximab, an anti-cancer drug that was found to be useful by chance in patients with ME who developed cancer.
While we wait, I hope people will remember that ME isn't something people choose, and those affected deserve all the support given to those with other disabling conditions.