What is myalgic encephalomyelitis/chronic fatigue syndrome?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, chronic (long-term) and disabling illness. It causes extreme fatigue (also called post-exertional malaise).

Currently, there are no tests for ME/CFS.

ME/CFS appears to affect all age groups, but is most common in adults between their 20s and 40s. It's also twice as common in females than males.

Doctors do not yet understand the cause of ME/CFS, and there is no cure.

What are the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome?

Persistent and profound fatigue is just one symptom of ME/CFS. Other common symptoms of ME/CFS are:

• thinking problems, loss of memory or poor concentration
• pain — headaches, muscle pain or joint pain
• unrefreshing sleep or sleep disturbance
• a sore throat
• feeling dizzy, lightheaded or sick
• feeling like your heart is beating fast

The onset of ME/CFS symptoms can be sudden or gradual.

The key symptom of ME/CFS is post-exertional malaise (PEM). This means that your symptoms get worse after physical or mental activity.

Your PEM may appear immediately after activities or may be delayed by up to 3 days. It can take 24 hours or more to recover. Symptoms do not improve with rest.

ME/CFS can be very disabling and can reduce your ability to complete your regular daily activities. Many people are unable to continue with their work or studies.

What causes myalgic encephalomyelitis/chronic fatigue syndrome?

Doctors don't fully understand the cause of ME/CFS, but factors may include:

• infection (a common trigger)
• environmental exposures
• physical trauma, such as surgery
• genetic factors — ME/CFS can run in families

A sudden onset of symptoms may follow a bacterial or viral infection, such as:

• Epstein-Barr virus (glandular fever)
• Ross River virus
• cytomegalovirus (CMV)
• human herpes virus
• human parvovirus (fifth disease)
• rubella
• Q fever (coxiella burnetii)

People with ME/CFS often have other conditions, such as:

• postural orthostatic tachycardia syndrome (POTS)
• fibromyalgia

PEM is also common if you have long COVID.

How is ME/CFS diagnosed?

There is no single test to diagnose ME/CFS. Your doctor will ask you about your symptoms, and how long you have had them. They might do some tests to rule out other possible causes of your symptoms.

You can only receive a diagnosis of ME/CFS after you have had disabling fatigue for 6 months or more. In children and adolescents, these symptoms need to last for 3 months or more.

How is myalgic encephalomyelitis/chronic fatigue syndrome treated?

There is no cure for ME/CFS, but there are several things your doctor may suggest to help manage your symptoms.

Your treatment will depend on your most severe complaint. For instance, sleep disturbance can be helped with good sleep hygiene.

Your doctor may also recommend energy management, or pacing, as a coping strategy.

Pacing

Pacing, or energy management, aims to find the right balance between rest and everyday activities. This involves carefully planning activities and rest to avoid triggering symptoms. The idea is that if you use your energy carefully, your energy levels will gradually increase.

Pacing involves:

• Learning how to check your energy levels so that you can change how much you are doing as needed.
• Dividing tasks and activities into smaller tasks that are easier to manage.
• Taking control of your energy levels rather than following other people's advice when it doesn't feel right.

Your symptoms may come and go, so you'll need to plan each day's activities carefully. Try to save your energy for the things that are most important to you. And plan to rest as you need to.

Other healthcare professionals

Your doctor may also suggest working with other healthcare professionals such as:

• an occupational therapist — for home adaptations
• a physiotherapist
• a psychologist — can help provide symptom relief through cognitive behaviour therapy or mindfulness

Treatments with little evidence

Currently here is not enough evidence to support the use of any medicines for ME/CFS.

Graded exercise therapy is controversial. Many ME/CFS consumer and advocacy groups have concerns that it may be harmful.

Be careful when considering any commercially available treatments as ME/CFS doesn't have a known cure yet.

Can myalgic encephalomyelitis/chronic fatigue syndrome be prevented?

It is hard to prevent ME/CFS as the cause is unclear.

Complications of myalgic encephalomyelitis/chronic fatigue syndrome

The combination of chronic symptoms and limited social support may place you at risk of depression.

Resources and support

Call Emerge Australia info line on 1800 865 321 or join a peer support group.

You can find resources about ME/CFS at Bridges & Pathways.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.