Myalgic Encephalomyelitis.  What Is It?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, digestive, immune and cardiac systems.  ME is classified as a neurological disorder by the World Health Organization.

ME/CFS significantly impacts hundreds of thousands of Australians every year.  Up to 1% of Australians are affected by CFS.  This would mean 100 cases in the Daylesford/Hepburn area. (Daylesford SA2 population 10,000).

Recently, the Federal Government’s inquiry into Long COVID found that Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have significant overlaps.  It is estimated that 4.7% of adult Australians have had or currently have post-COVID-syndrome (Long COVID).  This means there could be up to an additional 450 people in Daylesford/Hepburn suffering the most commonly reported ME/CFS symptoms.

Symptoms

People with ME/CFS experience a wide range of symptoms. These symptoms can vary considerably between patients.  Common symptoms include:

  • post-exertional malaise (PEM): symptoms get worse after physical or mental activity
  • sleep dysfunction
  • widespread pain in muscles or joints
  • sensitivity to noise and/or light
  • light-headedness and/or dizziness
  • difficulty with being upright
  • gastrointestinal problems such as nausea, abdominal pain, bloating and irritable bowel syndrome
  • flu-like symptoms
  • problems with temperature regulation
  • sensitivities to food, medications and/or chemicals
  • cognitive difficulties, such as confusion, or problems with concentration and/or memory

Management

With no known cure or treatment options, management of ME/CFS aims only to reduce symptom severity.  Pacing and rest are the most effective ways to manage symptoms.

Recovery

For most people, ME/CFS is a lifelong condition, full recovery (a return to pre-illness functioning) is rare and estimated at less than 10%.

How do I Know If I Have It? How Do I Get Help?

Emerge Australia is a support body which exists to support people living with ME/CFS, as well as their carers and health professionals.  They offer Patient Support, an Information Service and a Telehealth Nurse Service and other support programs.

Learn more at: https://www.emerge.org.au/mecfs-information/