Facts about ME/CFS

  • The cardinal feature of ME/CFS is Post-Exertional Malaise (PEM), which is a worsening of symptoms following exertion. Depending on the individual, PEM can be triggered by the lightest of activities, such going for a short walk, having a shower, or even (in extreme cases) lifting the head off the pillow. It can have delayed onset (24-48 hours), and can last days, weeks or even months. For this reason, exercise and exertion can be detrimental. People with ME/CFS need to carefully monitor their activity levels, ensuring they stay within their energy envelope.
  • People with ME/CFS experience many other symptoms, including pain, sleep disturbances, fatigue, cognitive impairment, orthostatic intolerance (symptoms triggered when upright), sensitivity to light and noise, gut dysbiosis, and neurological symptoms such as difficulty with temperature regulation and numbness/tingling.
  • People with ME/CFS have a poorer quality of life than people with illnesses such kidney disease, Type II diabetes, stroke, or multiple sclerosis.
  • At least 25% of people with ME/CFS are bedbound or housebound at some point during their illness – some for years or decades.
  • Prevalence is estimated to be approximately 0.4-1.0% of the population, meaning that up to 240,000 Australians may be affected.
  • ME/CFS research receives only 4% of funding that it needs, compared with its disease burden.