Chronic fatigue syndrome (CFS) — also sometimes known as myalgic encephalomyelitis (ME) or ME/CFS — is a complex condition that causes extreme fatigue, sleep problems, pain and other symptoms. People with CFS feel very tired and exhausted much of the time. The fatigue doesn’t improve with rest, and is often much worse after even small amounts of physical or mental activity.
The impact of CFS on everyday life, including work or study, is often significant. That’s because having CFS can stop you from doing your usual activities. Previously simple tasks may become hard, and it may sometimes be too difficult to even get out of bed. Some people with severe symptoms are not able to leave their homes for extended periods.
While there is no cure for CFS, there are treatments to help relieve symptoms and help you feel better as you recover.
People with chronic fatigue syndrome describe feeling overwhelming and persistent tiredness or fatigue. The tiredness is both physical and mental, and does not improve with rest or sleep. People with CFS report waking up feeling unrefreshed, or feeling just as tired as when they went to bed.
Chronic fatigue syndrome also involves having episodes of extreme tiredness and worsening of other CFS symptoms (see below) after doing activities. The activity may be physical or mental, and may be relatively minor. People often describe this symptom as a ‘crash’. The crash can occur straight after the activity or several hours later. Doctors refer to it as exertional exhaustion or post-exertional malaise (PEM). It can take several hours or days (sometimes even weeks) to recover from one of these episodes.
Other symptoms that commonly affect people with CFS include:
- problems with memory, thinking clearly and concentrating – sometimes described as ‘brain fog’;
- feeling dizzy, weak, sick (nauseated) or light-headed when you are standing up or sitting upright (known as orthostatic intolerance);
- tender, aching muscles;
- joint pains without redness or swelling of the joints;
- frequent sore throat; and
- tender lymph nodes in the neck or armpits.
Chronic fatigue syndrome usually comes on suddenly, but it can come on gradually. Symptoms may come and go over the course of the illness, which can last months to years. There are varying levels of severity – some people have mild symptoms that don’t impact their lifestyles too much, whereas those with severe disease are extremely limited by their condition.
Other conditions, including anxiety, depression, irritable bowel syndrome and migraines, may also be associated with CFS.
Causes and risk factors
The cause of CFS is not known. It’s possible that there are several causes, or that several factors together can lead to the development of CFS. Doctors have moved away from the idea that CFS is a psychological disorder.
Infectious illnesses such as glandular fever (caused by Epstein-Barr virus) and other viral infections have been suspected as a possible cause or trigger for CFS. Hormonal imbalances, stress, abnormalities in energy production, genetic factors and immune system problems may also play a role, but there is no firm evidence that they cause CFS.
It’s also possible that unbalanced gut microbiota (the collection of microbes in your digestive system) may contribute to the development of some CFS symptoms.
Chronic fatigue syndrome most commonly affects people aged 40 to 60 years old, but people of any age (including children and adolescents) can be affected. Women tend to be affected more than men. It is thought that CFS has a significant impact in Australia, but recent figures on the number of people affected are scarce.
Diagnosis of chronic fatigue syndrome
The symptoms of CFS are very variable and can also occur with a number of other conditions. There is no special test to confirm the diagnosis of CFS — usually tests are done to exclude other conditions, such as fibromyalgia, abnormalities of the thyroid gland, sleep disorders, mental health disorders and anaemia, all of which which can produce a similar picture.
Your doctor will ask about your symptoms and perform a physical examination. If you have symptoms suggesting ME/CFS and there are no physical findings or test results suggesting another condition, you may be diagnosed with chronic fatigue syndrome.
According to the US Institute of Medicine (IOM), chronic fatigue syndrome can be diagnosed if you meet the following criteria.
You have been experiencing 3 main symptoms of:
- unexplained, severe fatigue that has lasted for 6 months or longer, is not improved by rest and significantly interferes with your daily activities and work;
- post-exertional malaise (PEM) – extreme tiredness after an activity that takes several hours or days to recover from; and
- sleep problems including unrefreshing sleep, and difficulty falling asleep or staying asleep.
You also need to have experienced at least one of these 2 additional symptoms:
- problems with memory, thinking and concentration; or
- orthostatic intolerance – worsening symptoms of dizziness, weakness, seeing spots or blurred vision or feeling light-headed when you are standing up or sitting upright.
There are several different criteria that have been used to diagnose ME/CFS, but the diagnosis is always based on symptoms. See your doctor if these symptoms sound familiar – many people with CFS have not been diagnosed.
Treatment for chronic fatigue syndrome
Unfortunately, there is no cure for CFS, and in some cases, the condition can persist for several years. However, there are treatments available that are aimed at relieving symptoms, increasing levels of activity and improving quality of life.
Your doctor may recommend you see a variety of healthcare providers to help you manage your symptoms and adjust your lifestyle. These may include a physiotherapist, occupational therapist, social worker and/or counsellor. Home visits can usually be organised for people who are too unwell to leave their homes. Support from doctors and therapists, as well as family and friends is essential.
Always check with your doctor before trying any new medicine, therapy or supplement. There is limited evidence for the effectiveness of many treatments for CFS, and some therapies may not be recommended.
Some people with CFS find it helpful to pace their activities — balancing periods of activities with periods of rest. Pacing involves knowing what you are capable of doing, and not pushing yourself to do more than this. It may mean doing tasks in stages, with scheduled rest periods in between. Plan your activities for each day and prioritise the most important tasks. If there is a time of day that you tend to have more energy, try to do activities then.
If you have problems with memory, it may help to write things down in a ‘memory book’ – use the same book for all reminders. Also, try to get into the habit of always putting things (especially important items such as keys) in the same place.
Altering your sleep habits may also help improve symptoms over the long term. The following tips can help improve the quality of overnight sleep:
- reducing your caffeine intake;
- avoiding daytime naps after 3pm;
- doing relaxing activities before bed;
- going to bed and getting up at the same time each day; and
- doing some gentle exercise during the day (within your limits).
Very low-impact exercise may be suitable for some people with CFS. Working with your doctor and physiotherapist to design an exercise programme that you can tolerate and that doesn’t make your symptoms worse is important. A suitable exercise programme may improve your quality of life, but shouldn’t take priority over activities of daily living.
It’s important to remember that carrying out usual daily activities is enough exercise for many people with CFS. And in those with severe CFS, even these activities can be too much at times. Don’t push yourself to do too much.
It might help to keep a diary to see whether certain activities or levels of exercise tend to trigger a crash. This will help you work out your exercise limits. A diary will also help you keep track of your exercise limits over time.
Graded exercise therapy was previously recommended for CFS, but this is no longer a widely accepted treatment because it frequently caused post-exertional malaise (PEM) and many people with CFS found they could not tolerate it. In fact, some people found their condition worsened while being treated with graded exercise therapy.
Diet and supplements
Eating a healthy, balanced diet is recommended for people with CFS. Try to avoid caffeine, excess sugar and rich, fatty foods. It may also be a good idea to eat regular, small meals and have snacks in between meals. You should also avoid or cut down on alcohol, because it can contribute to tiredness.
Dietary supplements may be beneficial for some people – your doctor may recommend you see a dietitian for advice on diet and the need for vitamin and mineral supplements.
While there are currently no medicines that have been shown to effectively treat CFS, there are medicines that can be used to relieve some symptoms.
Simple painkillers can be used to help relieve headaches and muscle and joint pain. Medicines such as paracetamol, aspirin or non-steroidal anti-inflammatory medicines can be tried for pain relief.
Sometimes medicines may be recommended to help with sleep problems. Several different types of medicine can be used to help with sleep.
Medicines may also be prescribed to treat conditions that are commonly associated with CFS, such as irritable bowel syndrome and migraines. Antidepressants can be used to treat depression and anxiety, and certain antidepressants can also help improve sleep patterns and treat chronic (ongoing) pain in some people with CFS.
Complementary and physical therapies
There are several complementary and physical therapies that may help relieve symptoms in CFS. Acupuncture, tai chi, massage, meditation, relaxation therapy and yoga may help people to relax and increase energy, as well as treat muscular aches and pains.
Heat packs, warm baths and gentle stretching exercises may help with muscle and joint pain. TENS – transcutaneous electrical nerve stimulation – can also provide relief from muscle pain.
Support is extremely important for people with chronic fatigue syndrome. Support groups allow you to meet with other people with CFS, which can provide emotional support as well as information and tips for coping with your condition.
Talking to other people who are going through, or have gone through, a similar situation can help you feel like you are not alone. Support groups can also sometimes help family members to understand more about your condition.
Support groups can provide care and understanding in a way that therapists and healthcare providers sometimes cannot. Talk to your doctor about joining a support group.
The outlook for people with chronic fatigue syndrome is variable. While many symptoms significantly improve, many adults don’t get back to feeling exactly the same as before the illness, and continue to need more rest than before. Children, however, often make a complete recovery.