Did you know that approximately around 0.2-2 per cent of the population in Australia has a serious disorder called myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS)? Symptoms are wide ranging including; disabling fatigue that is often likened to jet lag, concentration and memory problems, unrefreshing sleep and body aches, to name a few. For such a prevalent condition there is a lack of money and research in comparison to other serious conditions such as chronic pain and cancer.
For a long time ME/CFS has been trivialised, however emerging research is demonstrating its physiological mechanisms at a cellular level. Unfortunately for those with ME/CFS it is complex and more research is needed but I can tell you what the disorder isn’t; it isn’t being lazy, lack of fitness or psychological, nobody says ‘when I get older I want to have ME/CFS’ as it is not a choice.
There is no definitive cause of ME/CFS, but the management of the illness is important. There is however controversy as to what that management involves, especially in terms of Graded Exercise Therapy, one of the recommended options. Some believe there is an insinuation that those who have ME/CFS need to exercise, others believe if it is not prescribed appropriately it will lead to symptoms worsening – all of this means the term ‘Graded Exercise Therapy’ or GET has become a dirty word.
Now driving a car is actually quite dangerous when you think about it, you are piloting a large tin can at a speed where even a small lapse in concentration can lead to a crash. It is actually quite similar with exercise and a person with ME/CFS, if they do too much it can lead to a crash and worsening of their symptoms. Thankfully there is plenty of education and training that goes into getting a car licence which reduces the chance of having an accident but unfortunately with exercise and ME/CFS there is not much support and guidance for those managing their health through GET.
This has led to people with ME/CFS being advised by those with the best intentions to ‘exercise’ which often leads to them unwittingly overdoing it. Exercise needs to be tailored, individual and flexible which is similar to learning to drive different vehicles, whether it be an automatic or manual transmission, each person may need to be managed differently.
I often describe exercise as any physical activity that is above and beyond what you normally do so that may be sitting up in bed for those that cannot leave their bed or walking for those that are more able.
We exercise every day without knowing, whether it is walking to an appointment or to get food from the shops. We don’t feel that this may be exercise as we ‘have’ to do it but GET can involve such tasks as well as those that are more or less vigorous depending on the person’s level of health. GET is not simply just exercise such as going to the gym or pilates, but a tailored and individualised program that involves pacing strategies to help balance the day, goal setting, sleep strategies, setback planning and of course exercise that does not worsen symptoms.
"To me exercise and GET are an important part of managing ME/CFS as I don’t believe they are any different to other chronic health conditions."
Research adds to the controversy in regards to the safety of GET. A trial conducted called the PACE trial which compared different CFS management strategies including GET and pacing has been scrutinized closely. Pacing takes the daily activities a person needs or wants to do and divides them up into portions which can be performed to fit with the energy a person has available for that day.
In the PACE trial management strategies were delivered as individual treatments, although in standard practice you would deliver these and others in combination, it is like asking a health professional to discuss only exercise to a diabetic and not diet. It was demonstrated that GET had less adverse events when compared to pacing strategies which are championed by those often critical of GET.
GET is not meant to be curative but a management plan in conjunction with the rest of a person’s team of health professionals as well as friends and family. The importance of exercise as part of the management of chronic health conditions is well documented including cancer where if individually prescribed can lead to 30 per cent better survival rates.
To me exercise and GET are an important part of managing ME/CFS as I don’t believe they are any different to other chronic health conditions. Take a person with a heart condition, it is well researched that exercise is helpful but they wouldn’t just do any ‘exercise’. Too much can have dire consequences but the right amount will lead to the person having more control, understanding and ability to participate in life. This is what GET can do for ME/CFS but most importantly it needs to be flexible and tailored to the individual.
I have spent over 16,000 hours helping with people with ME/CFS. Seeing the positive change in people’s life and empowering them to achieve what they didn’t think was possible is why I love what I do. ME/CFS is unfairly portrayed in the wider community, hopefully with time we continue to see further research improve our understanding of ME/CFS and continue to combine management strategies including GET to improve people’s lives.
Note about the author: Nathan Butler is an Accredited Exercise Physiologist and Director of the mutli-disciplinary Active Health Clinic.
