Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. As many as 180,000 Australians are directly affected by ME/CFS.
CFS Signs and Symptoms
CFS is characterised by an overwhelming physical and mental exhaustion, unlike the tiredness that well-people experience after strenuous exercise or a day’s work or the “chronic fatigue” associated with many chronic illnesses.
The pathological “fatigue” experienced in ME/CFS may combine exhaustion, weakness, heaviness, general malaise, light-headedness, and sleepiness that can be overwhelmingly debilitating. Energy levels are not promptly restored by rest, as is the case with “normal fatigue”.
The other symptom of CFS is post-exertional malaise, which relates to slow recovery after both mental and physical function with a disproportionate loss of mental and physical stamina, rapid muscle and cognitive fatiguing and a worsening of other symptoms. The worsening may be delayed 24 hours or more and recuperation to pre-activity levels is slow, generally taking at least a day and sometimes weeks or months. The amount of activity required to worsen symptoms can be minimal and varies from person to person and from hour to hour and day to day.
CFS sufferers also experience unrefreshing sleep, changed sleep patterns or reduce sleep quantity. Typically they will also suffer increased joint or muscle aches or headaches.
How can an Accredited Exercise Physiologist (AEP) assist in the management of CFS?
The challenge of any chronic disease, including ME/CFS, is to learn how to live within the limitations of that disease.
Often, there is a tendency for people with ME/CFS to ‘push’ when they are feeling improved and to continue activities until symptoms worsen, by which time it is too late to prevent post-exertional malaise and a ‘crash’ from which recovery can be prolonged. Most individuals with ME/CFS have experienced the ‘push’ and ‘crash’ cycle, which is unhelpful, frustrating and can lead to further complications. Pacing is a key strategy to keep ME/CFS symptoms manageable and to lead a consistent lifestyle. A progressive Pacing Plan will assist a person to move towards a higher level of wellness and is essential in the recovery process.
Accredited Exercise Physiologists (AEP) are 4 year university-trained health specialists that specialise in managing chronic conditions, including CFS, using lifestyle management strategies. They can help the CFS sufferer determine their ability/disability level and then start the process of establishing a Pacing Plan, which involves determining threshold values for both mental and physical tasks for a given day and week.
The AEP will use tools such as activity/symptoms diaries and pedometers (to assess daily step count) to establish physical and mental thresholds. The diary also allows the client to prioritise each activity, plan their daily/weekly load and determine the link between symptom scores and daily activities. The main aim is to reduce the boom-bust cycle and establish weekly consistency. Once the client has achieved a consistent weekly routine with no worsening of symptoms, the AEP will assist the client in safely increasing their exercise/physical capacity within their Pacing Plan. This is termed Graded Exercise Therapy (GET). GET is a type of physical activity therapy that starts very slowly and gradually increases over time. Five minutes per day is a typical starting point for an individual who has been totally inactive. Research has shown that GET is key management strategy in reducing the symptoms of CFS and helps sufferers recover from their illness. The AEP will assist the client in setting goals to prevent activating symptoms and assist in increasing overall fitness and physical capacity over time. It is important that this process is closely monitored to ensure positive adaptation.
White, P.; Goldsmith, K.; Johnson, A.; Potts, L.; Walwyn, R.; Decesare, J.; Baber, H.; Burgess, M.; Clark, L.; Cox, D. L.; Bavinton, J.; Angus, B. J.; Murphy, G.; Murphy, M.; O’Dowd, H.; Wilks, D.; McCrone, P.; Chalder, T.; Sharpe, M. (2011). “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial”. The Lancet 377 (9768): 823–836