Living With Chronic Fatigue Syndrome (ME/CFS)
Published: 26 April 2021
Published: 26 April 2021
Chronic fatigue syndrome (ME/CFS) is a disabling illness estimated to affect up to 250 000 Australians (Emerge Australia 2020a).
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex, chronic neurological condition affecting the brain, muscles, digestive system, immune system, cardiac system and other areas of the body (Emerge Australia 2020a).
ME/CFS is characterised by post-exertional malaise (PEM), which describes the worsening of symptoms after physical or mental activity. Some people might experience PEM after going on a walk, while those with a more severe illness might trigger it by simply brushing their teeth or reading a sentence. Once triggered, PEM may persist for days, weeks or months (Emerge Australia 2020a).
Note that PEM may not occur immediately after exertion and can start 24 hours later in some cases (Better Health Channel 2017).
The cause of ME/CFS is not yet understood and there is no cure (Healthdirect 2021).
ME/CFS varies in severity and can be categorised into three levels:
(Emerge Australia 2020c)
While the exact cause of ME/CFS is unknown, it appears to be associated with:
(Emerge Australia 2020a)
Interestingly, between 75 and 80% of people living with ME/CFS are female, although the condition can affect men, women and children of any age, ethnicity and socioeconomic background (Emerge Australia 2020a).
ME/CFS is more than just ‘chronic fatigue’, which is a symptom associated with many conditions but not an illness itself (Emerge Australia 2020a).
In reality, ME/CFS is a multi-systemic illness that involves a variety of symptoms, including:
(Emerge Australia 2020a; Better Health Channel 2017; Healthdirect 2021)
These symptoms may fluctuate from hour to hour (Better Health Channel 2017).
At least 25% of people living with ME/CFS are housebound or bed-bound due to severe symptoms (Emerge Australia 2020a).
Depending on the severity of their illness, people with ME/CFS may have difficulty:
(CDC 2021; Better Health Channel 2017)
Some people may also encounter financial difficulties due to ME/CFS (Better Health Channel 2017).
Diagnosing ME/CFS often involves excluding other illnesses, as there is no single diagnostic test available (Better Health Channel 2017).
Emerge Australia recommends using the US National Academy of Medicine (NAM)’s proposed diagnostic criteria, which stipulates that:
The patient must be experiencing all three of the following symptoms:
The patient must also be experiencing either:
(NAM 2015; CDC 2019)
As there is no cure for ME/CFS, treatment focuses on managing symptoms and optimising quality of life (Healthdirect 2021).
Pacing is a strategy used to optimise a patient’s ‘energy envelope’ (i.e. the amount of energy that they can safely exert every day without triggering PEM). It involves breaking down activities into smaller tasks and taking a rest break (i.e. no stimulation and very little activity) between each ‘section’ of the activity. The goal is for the patient to end each activity with some ‘fuel in the tank’. In some cases, patients will be advised to only perform 50 to 60% of their energy envelope (Emerge Australia 2020b).
For example, someone living with ME/CFS may pace themselves by taking a shower, resting, brushing their teeth and then resting again instead of showering, brushing their hair and combing their hair all at once (Emerge Australia 2020b).
Clinicians are able to assist patients using stepwise symptom management, which involves ranking symptoms from most to least problematic and exploring management options, starting with the symptoms that are most problematic (Emerge Australia 2020b).
Health professionals including psychologists, occupational therapists and physiotherapists may also be able to assist in treatment (Healthdirect 2021).
Other potentially helpful strategies for patients include:
(Healthdirect 2021; Emerge Australia 2020b)
It is essential that patients living with ME/CFS are never pushed past their limits, as this can be harmful to their health (Better Health Channel 2017).
Question 1 of 3
Which of the following activities could trigger PEM?
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