Who can develop ME/CFS?

ME/CFS affects people of all ages, ethnicities and socioeconomic backgrounds. 75-80% of people with the condition are female. Around 25% of people with ME/CFS experience severe symptoms, leaving them housebound or bedbound.

While estimates of how many people have ME/CFS vary, it is thought that around 0.4-1% of the population is affected. This means that up to 250,000 Australians have the condition.

What causes ME/CFS?

The cause of ME/CFS is currently not known, although a number of factors may be involved, including:

• Infection (which is the most common trigger, but is not universal)

• Environmental toxins
• Physical trauma (such as surgery or car accident)
• Genetics (like many other chronic diseases, ME/CFS can run in families, although the specific genes involved haven’t yet been identified and more research is needed)
• Physical, mental or emotional stress may also contribute to the onset of the condition

For some people, ME/CFS comes on suddenly. For others, there is a gradual onset over months or years. It is not currently understood why there are these differences in how the illness starts.

While there are currently no diagnostic biomarkers or tests for ME/CFS, there are many biological abnormalities that researchers have found in people living with the condition. These include an abnormal physiological response to exercise, altered immune function, changes in the bacteria in the gut and impaired energy production.

(reference: https://www.emerge.org.au/what-is-mecfs/)

What are the other conditions associated with ME/CFS?

In addition to ME/CFS, it is common for people living with ME/CFS to have other conditions, including:

Fibromyalgia: is a condition that causes widespread pain and muscle stiffness throughout the body.

Orthostatic Intolerance (OI): is an ‘umbrella term’ for a number of conditions where symptoms are made worse by sitting or standing.

Mast Cell Activation Syndrome (MCAS): is a condition where the mast cells in your body, which are part of your immune system, react to triggers that normally wouldn’t cause a problem, producing symptoms of an allergic reaction.

Ehlers-Danlos Syndromes (EDS): refers to a group of genetic disorders that involve connective tissue. It is inherited and can affect any part of the body.

(Reference: https://www.emerge.org.au/associated-conditions/)

Arthritis, Pain Support & Emerge ACT Support Groups

The following support groups are run in conjunction with Arthritis, Pain Support & Emerge ACT.

• Cafe Catch Up for people with ME/CFS, Fibromyalgia, Long COVID or Persistent Pain and Carers
• ME/CFS and Fibromyalgia Support Group
• Lounging Lizards
• Steady as She Goes
• WhatsApp PEM Self Help ACT

If you would like further information or to join any of these groups, contact us via

Phone: 1800 011 041 or Email: [email protected]

What are the symptoms of ME/CFS?

A common misconception is that people with ME/CFS have ‘chronic fatigue’ and are just tired. Chronic fatigue is a symptom of many conditions (for example, heart disease, cancer, multiple sclerosis, anaemia and ME/CFS), but it is not a condition in its own right. Persistent and profound fatigue is just one symptom of ME/CFS, as it is with a number of other conditions.

The central feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms get worse after physical or mental activity. PEM is very disabling and causes fluctuations in a person’s health: what they may be able to do one day, they might not be able to do the next. The level of activity that triggers PEM varies. For some, it may be a short walk or writing a homework assignment. For people who are more severely unwell, it could be brushing their teeth or reading a sentence of a book. PEM is often delayed and can last days, weeks or months, making the illness difficult to manage.

Other common symptoms include:

• Sleep dysfunction
• Widespread pain in muscles or joints
• Cognitive difficulties, such as confusion, or problems with concentration or memory
• Sensitivity to noise or light
• Light-headedness 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 or chemicals

 How is ME/CFS diagnosed?

While there is currently no single test for ME/CFS, an accurate diagnosis can be made by a doctor using accepted diagnostic criteria.

Diagnosis should also involve the exclusion of other possible causes of your symptoms. It is also common for people with ME/CFS to have other associated conditions. To exclude other potential causes for your symptoms, your doctor may need to run additional tests or refer you to a specialist.

Once all other potential causes of your symptoms are eliminated, a clear diagnosis of ME/CFS using the NAM criteria can be made. For more information on diagnosis visit Emerge Australia.

(Reference: https://www.emerge.org.au/diagnosis/)

How is ME/CFS managed?

There is no cure for ME/CFS. The best way to manage your condition is to learn how to stop your energy draining too fast to help reduce your symptoms, and to learn how to make the most of the energy you do have.

Stop, Rest, Pace

Stop: activity before you experience symptoms, or as soon as you notice an increase in symptoms.

Rest: take regular rest breaks throughout the day and during activities.

Pace: break your activities up with periods of rest to allow your battery to charge. Everyone is different, so it is important for you to get to know how much you can do and how much rest you need.