What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe, complex, chronic illness. It affects most body systems, particularly the nervous, immune, cardiac, gastrointestinal and endocrine systems. It can devastate the health of women, men and children, leaving many unable to work, study or leave their homes for years. There is no cure and, for many, it is a lifelong condition. ME/CFS is conservatively estimated to affect 0.4-1% of the world’s population. This means up to 250,000 Australians may be affected.
More than ‘chronic fatigue’
Many people mistakenly refer to ME/CFS as ‘chronic fatigue’. ‘Chronic fatigue’ is a symptom of many conditions, including ME/CFS, but it isn’t a condition in its own right. People with ME/CFS experience many different symptoms, not just fatigue. The hallmark symptom of ME/CFS is post-exertional malaise (PEM), extreme worsening of symptoms for days or weeks after minimal physical or mental activity, which can be delayed by 24-48 hours. For this reason, graded exercise therapy (GET) is no longer considered an appropriate treatment for ME/CFS, as it can make the condition worse. Other common symptoms include flu-like symptoms, widespread pain, unrefreshing sleep, sensitivity to noise and light, abnormal heart rate and blood pressure while upright, memory and concentration issues, allergies and many others.
How severe can ME/CFS be?
Severity of the condition ranges from mild to severe and varies, with some improving and others getting worse, over time. Even ‘mild’ cases involve the loss of at least 50% of normal function. Around 25% of people with ME/CFS are housebound or bedridden. People with ME/CFS can be more impaired than those with illnesses like heart disease, multiple sclerosis, or kidney failure.
What causes ME/CFS?
The precise cause of ME/CFS is still unknown. Common triggers include infections, such as the flu or glandular fever, or environmental triggers, such as physical trauma (like car accidents or surgery) or exposure to environmental toxins.
Are there any treatments?
Currently there are no effective treatments. Medical care consists mostly of symptom management for pain, sleep difficulties and other aspects of the illness. Daily activity pacing is necessary in order to stay within the energy available, and avoiding exceeding capacity, as this can cause harm, potentially worsening the illness permanently. To learn more check out our ME/CFS Fact Sheet.