What is Myalgic Encephalomyelitis (ME)/chronic fatigue syndrome (CFS)?

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a chronic (long-term), complex and disabling illness that causes extreme fatigue and other symptoms that cannot be explained by any other medical condition.

If you have ME/CFS, you are likely to feel very tired, very often, even if you have not been active. You may also have a host of other symptoms.

Doctors do not yet understand the cause of ME/CFS, and there is no simple cure. If you or your child has ME/CFS, your doctor can suggest treatments you may find helpful.

What are the symptoms of ME/CFS?

The key symptom or feature of ME/CFS is called post-exertional malaise (PEM). This means that some or all of your symptoms get worse after exercise or mental effort and don’t improve after sleep or rest. PEM can be very disabling and can reduce your ability to function during regular daily activities. PEM is also common if you have long COVID.

ME/CFS may start suddenly or gradually over months or years. The level of activity that triggers your PEM will vary from person to person and can depend on how severe your condition is. For example, if your ME/CFS is relatively mild, you may experience PEM after going for a walk or a jog, but if your ME/CFS is severe, just reading a book or brushing your teeth could bring on your PEM.

Your PEM may appear immediately after activity or may sometimes be delayed by up to 3 days. It can last for 24 hours or for a few days. A more serious relapse can last for weeks or months.

A common misconception is that people with ME/CFS have ‘chronic fatigue’ and are just very tired. Persistent and profound fatigue is just one symptom of ME/CFS.

Other common symptoms of ME/CFS, that may also increase (or only occur) with PEM include:

• thinking problems, loss of memory or poor concentration
• sleeping difficulties including unrefreshing sleep
• headaches, light-headedness or dizziness
• muscle pain, joint pain, sore throat
• gastrointestinal changes such as nausea, constipation or diarrhoea
• sensitivities to light or noise, food, medicines or chemicals
• problems with temperature regulation

What causes ME/CFS?

You can develop ME/CFS at any age. Up to 8 in every 10 people with ME/CFS are female. Doctors don’t fully understand the cause of ME/CFS, but factors may include:

• infection (a common trigger)
• environmental toxins
• physical trauma, such as surgery
• genetics — ME/CFS can run in families
• physical or emotional stress

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, and might do some tests to rule out other possible causes.

How is ME/CFS treated?

There is no cure for ME/CFS, but there are several things your doctor can suggest to help you relieve your symptoms and improve your quality of life.

Be careful when considering any commercially available product or treatment promoted as a ‘cure’ for ME/CFS, as it doesn’t have a known cure yet.

Current treatments have 2 key aspects.

• Pacing and rest: pacing is a strategy designed to help you live within your energy ‘envelope’ — this is the amount of energy you can safely use without triggering symptoms. It breaks down your activity into short bursts, interspersed with rest. The aim is to have some energy left at the end of the day.

   

  For more information about pacing, see the Emerge Australia fact sheet.

• Stepwise symptom management: this involves ranking your symptoms and exploring ways to reduce your symptoms, starting with the most problematic ones.

Your doctor may also suggest working with other healthcare professionals such as an occupational therapist, physiotherapist or psychologist.

Phycologists can help manage depression and anxiety through education and the development of coping skills.

Ask your doctor about how to best manage your work or school commitments while you are sick and when you might be ready to return.

It may also help if you:

• keep a diary to see whether certain activities or levels of exercise tend to trigger your symptoms
• make time to relax when you can
• go to bed at the same time each night and limit your daytime napping
• avoid caffeine, alcohol, nicotine and anything else that could affect your sleep