Chronic fatigue syndrome (myalgic encephalomyelitis)

Chronic fatigue syndrome (CFS) is a condition that causes severe mental and physical tiredness and interferes with your daily life. It’s also known as myalgic encephalomyelitis (ME) and post-viral fatigue syndrome (PVFS).

About chronic fatigue syndrome

Chronic fatigue syndrome causes unexplained severe tiredness after activity and doesn't go away when you rest.

Around 250,000 people in the UK have chronic fatigue syndrome. It's more common in women than men, and is most common in young to middle-aged adults. Chronic fatigue syndrome can affect children too, usually between the ages of 13 and 15.

Chronic fatigue syndrome affects people in different ways and your symptoms can fluctuate. You may have periods when they get better, and other days when they are more severe. If your symptoms are mild, you may be able to carry on with work or study. However, you may have to give up leisure and social activities to spend more time resting. If your symptoms are severe, you can become seriously disabled and housebound.

Symptoms of chronic fatigue syndrome

Symptoms of chronic fatigue syndrome can start suddenly or may develop gradually. The condition causes extreme tiredness that is different to everyday tiredness. It can make you less able to cope with levels of activity that were previously normal for you, in your work, school or social life. Even everyday physical activity, such as taking a shower, can make you feel exhausted.

Other symptoms of chronic fatigue syndrome can include:

• pain in your muscles and joints
• headaches
• difficulty sleeping
• painful glands in your neck or armpits
• a sore throat
• forgetfulness, confusion and difficulty concentrating
• feeling your heartbeat thumping in your chest (palpitations)
• irritable bowel syndrome (IBS) symptoms, such as pain in your abdomen (tummy)
• dizziness
• sweating
• problems with your balance

Over time, you may become depressed or have mood swings.

Your symptoms may not come on until a day or more after you do some activity, and can last for days or even weeks. How severe they are can also vary throughout the day, and some days may be worse than others. Most people with chronic fatigue syndrome find that their symptoms come and go, and often return after an illness or time of stress.

If you have any of these symptoms, see your GP.

Causes of chronic fatigue syndrome

The exact reasons why you may develop chronic fatigue syndrome aren't fully understood at present.

Some people develop it after having an infection, such as glandular fever or flu. There are several theories of what causes it. For example, it could be linked to disorders of your immune system (which helps your body fight infection) or your hormonal system. Many people who develop chronic fatigue syndrome were previously fit and active.

Diagnosis of chronic fatigue syndrome

Chronic fatigue syndrome is a difficult condition to diagnose as there isn't a specific test for it. Your GP will ask about your symptoms and examine you. He or she may also ask you about your medical history.

There are many other conditions that can cause symptoms similar to those of chronic fatigue syndrome. Therefore, your GP will do some tests to exclude other possible causes of your symptoms before he or she diagnoses you with chronic fatigue syndrome. Generally your GP won’t diagnose you with chronic fatigue syndrome until you have had symptoms for more than four months (three months in children).

In the meantime, your GP will give you advice about how to manage your symptoms.

Your GP may refer you to a doctor who specialises in chronic fatigue syndrome. If your child has the condition, your GP may refer him or her to a paediatrician (a doctor who specialises in children’s health).

Treatment of chronic fatigue syndrome

Treatment for chronic fatigue syndrome aims to manage your symptoms and gradually improve your ability to live your life as usual. Therefore, your treatment will depend on your specific symptoms – there is no single treatment that works for everyone.

Your GP or specialist will review your treatment regularly.

Self-help

Activity management is a way of managing your lifestyle. It can help you to prioritise certain activities and find a level of physical and mental activity that you're comfortable with. You can then set yourself goals to make gradual increases, while making sure you get enough rest after any activity. It can ensure you don't do any large bursts of activity that can set you back.

Another technique in which you make the most of your available energy is called pacing. Pacing involves organising your day into periods of activity and rest. It aims to help you to better understand your energy levels, types of activity and rest. You can then set realistic goals and get a sense of control over your day. However, at present there isn't enough evidence to prove that this works.

It's important to eat a healthy, balanced diet to give you the energy and nourishment you need. In particular, aim to eat regularly and include starchy foods that release their energy slowly in your meals and snacks. Some people have intolerances to certain food or drinks, or develop symptoms of IBS. It may be worth keeping a food diary to see if any foods trigger your symptoms. It’s a good idea to avoid fatty or sugary foods, especially if you're unable to move around much.

If you have problems sleeping, try to get into a routine by going to bed at the same time every night. Try a warm, relaxing bath or a milky drink before you go to bed.

Medicines

If you need pain relief, you can take over-the-counter painkillers such as paracetamol or ibuprofen. A low dose of a type of antidepressant called a tricyclic (such as amitriptyline) can help if you have problems with sleep or muscle pain. You don't need to have depression to be able to take these. However, it's not unusual to develop depression if you have chronic fatigue syndrome. If you’re already taking an antidepressant, your doctor may recommend you take a higher dose or a different type.

For all medicines, always read the patient information leaflet and if you have any questions, ask your pharmacist or GP for advice.

Talking therapies

Cognitive behavioural therapy (CBT) is a short-term psychological treatment that helps to challenge negative thoughts, feelings and behaviours that may show down your recovery. It can be especially helpful if you’re struggling to manage and pace your physical and mental activity. CBT may help you to develop coping mechanisms that can help you to carry on with your daily life and manage your recovery.

If you're referred for CBT, it doesn't mean your doctor believes your condition is 'all in your mind'. There is evidence that shows CBT is effective at treating chronic fatigue syndrome and improving symptoms, no matter what the cause.

Physical therapies

Graded exercise therapy (GET) means starting an activity that you can do comfortably, such as walking, and increasing your level of activity every few days. It’s important that you only have treatment with a trained GET therapist. Research shows that it can reduce tiredness and increase fitness and stamina.

Complementary therapies

Some people with chronic fatigue syndrome find complementary therapies, such as relaxation therapy, herbal remedies, massage, homeopathy and various food supplements, helpful. However, there isn't enough scientific evidence to show that they work.

Living with chronic fatigue syndrome

Chronic fatigue syndrome affects people differently. Many people find that their symptoms improve over time and some recover completely. Others find that their lives continue to be affected and they need a great deal of support.

Having chronic fatigue syndrome can have a major effect on many aspects of your life including relationships with your loved ones. It can be frustrating and upsetting if people don't understand how exhausted you feel. You may find it helps to talk to other people who are affected by chronic fatigue syndrome. Ask your GP if he or she recommends any support groups. These groups may also be able to give you practical advice and tips. For example, they may be able give you advice about any financial help you may be entitled to if you can’t stay in work.

Reviewed by Rachael Mayfield-Blake, Bupa Health Information Team, February 2014.

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