Chronic fatigue syndrome (myalgic encephalomyelitis)

This factsheet is for people who have chronic fatigue syndrome (CFS) – also known as myalgic encephalomyelitis (ME) – or who would like information about it.

Chronic fatigue syndrome or myalgic encephalomyelitis, also known as CFS/ME or post-viral fatigue syndrome (PVFS), is a range of conditions that cause persistent, extreme physical and mental tiredness that interferes with a person's daily life.
 

About chronic fatigue syndrome
Symptoms of chronic fatigue syndrome
Causes of chronic fatigue syndrome
Diagnosis of chronic fatigue syndrome
Treatment of chronic fatigue syndrome
Living with chronic fatigue syndrome

About chronic fatigue syndrome

CFS/ME is a condition that causes severe tiredness that doesn't improve after rest. It can happen after an infection, or less commonly after trauma such as an accident or an operation.

CFS/ME is a genuine, long-term debilitating condition. However, there is uncertainty around the causes and the symptoms people have as they can vary widely.

CFS/ME is more common in women than men, and you're more likely to develop the condition as you get older. It can affect children, although it's unlikely to affect children under 10, it usually affects children aged 13 to 15 years.

Around 250,000 people in the UK have CFS/ME. The condition affects people in different ways. If the symptoms of the condition are mild, people can carry on with work or study but may have to give up leisure and social activities to spend the weekend resting. If symptoms are severe, people can become seriously disabled and housebound.
 

Symptoms of chronic fatigue syndrome

CFS/ME causes extreme tiredness that is different from the normal tiredness that everyone experiences. It makes 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.

Common symptoms of CFS/ME, which can happen 24 to 48 hours after mental or physical activity, include:

• fatigue that lasts more than 24 hours at a level that you used to be able to manage without feeling tired
• muscle and joint pain
• painful glands in your neck or armpits
• a sore throat and headaches
• forgetfulness, memory loss, confusion, or difficulty concentrating
• sleep disturbances - waking up feeling tired or unrested or having trouble getting to sleep
• flu-like symptoms
• palpitations (the sensation of feeling your heartbeat thumping in your chest)
• dizziness and nausea
• sweating
• problems with your balance
• irritable bowel syndrome (IBS) symptoms such as constipation or diarrhoea and bloating

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

Your symptoms may vary throughout the day, with some days being worse than others. Most people with CFS/ME find that their symptoms come and go, often returning after illness or stress.

The symptoms of CFS/ME can start after you have been ill with an infection or may develop gradually over months or years.

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

Causes of chronic fatigue syndrome

Doctors don't fully understand what causes CFS/ME.

Some people develop CFS/ME after an infection, but it's not the same as the normal tiredness that often follows a bout of illness, such as glandular fever. Many people who develop CFS/ME have been previously fit and active.

There are several theories to explain CFS/ME. For example, it could be linked to disorders of your immune system (which helps your body fight infection) or your hormonal system.

The Department of Health suggests that until more research is carried out, it may be best to think of CFS/ME as a range of conditions that are triggered by different factors in people who have an underlying predisposition.
 

Diagnosis of chronic fatigue syndrome

It's important to get a diagnosis of CFS/ME as soon as possible so that you can get the right treatment and support. However, CFS/ME is a difficult condition to diagnose, so it may take several visits to your GP before you're diagnosed. Your GP should be able to make a diagnosis once other possible causes of your symptoms have been excluded and you have had symptoms for at least four months. In the meantime, your GP will be able to help you manage your symptoms.

There are no specific tests for CFS/ME. Your GP will ask about your symptoms, examine you and ask about your medical history. There are many other conditions that can cause symptoms similar to CFS/ME and your GP will test your urine and carry out blood tests to help rule these out.

Your GP may refer you to a doctor specialising in the condition. Children with the condition will usually be referred to a paediatrician (a doctor who specialises in children's health).

Your doctor will give you information about CFS/ME and the available treatments.
 

Treatment of chronic fatigue syndrome

Treatment for CFS/ME aims to manage your symptoms. The treatment you have depends on your specific symptoms – there is no single treatment that works for everyone.

Your GP or specialist will review your treatment regularly. He or she may recommend one or more of the following treatment options.

Self-help

Sleep problems may slow down your recovery. If you're having 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.

Activity management is a way of managing your lifestyle. It helps you to prioritise certain activities and find a level of physical and mental activity that you're comfortable with. Then you can set goals for making gradual increases, making sure you get enough rest after any activity and not doing 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. By better understanding your energy levels, types of activity, rest, and realistic goal planning and setting, you are able to get stability and a sense of control over your day. Pacing has been shown to improve a person's ability to cope with their symptoms and their chances of recovery.

Some people find that massage and stretching helps to relieve muscle pain.

It's important to eat a healthy, balanced diet to give you the energy and nourishment you need. Some people have intolerance to certain food or drinks, including alcohol and coffee, 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.
 

Medicines

Painkillers, such as paracetamol, may help relieve muscle and joint pain, headaches and other physical symptoms.

A low dose of an antidepressant can help with sleep or muscle pain even if you aren't depressed. If you are depressed your doctor may recommend a higher dose. Always read the patient information leaflet that comes with your medicine and if you have any questions ask your doctor for advice.

Talking therapies

Cognitive behavioural therapy (CBT) is a short-term psychological treatment. Using a set of structured techniques, a CBT therapist aims to challenge thoughts and behaviours that may hinder your recovery. It can be especially helpful if you're struggling to manage and pace your physical and mental activity.

If you're referred for CBT, it doesn't mean your doctor believes your CFS/ME is 'all in your mind'. There is evidence showing that CBT is effective at treating CFS/ME and improving symptoms.

Physical therapies

Graded exercise therapy (GET) means starting with an activity that you can do comfortably, such as walking, and increasing your level of activity every few days. The treatment needs to be delivered by a trained GET therapist. Evidence shows that it can reduce tiredness and increase fitness and stamina.
 

Complementary therapies

Many complementary therapies, such as relaxation therapy, herbal remedies, homeopathy and various food supplements, are sometimes recommended for people with CFS/ME. Some people may find them useful, but there is little scientific evidence to show that they are effective.
 

Living with chronic fatigue syndrome

 
CFS/ME affects people differently. Many people find that their symptoms improve over time and some recover completely. Unfortunately, others find that their lives continue to be affected and they need a great deal of support.

There are lifestyle changes that you can make to help you live with CFS/ME. These include getting the balance right between your levels of activity and rest as well as using supervised treatment programmes such as activity management and graded exercise therapy (GET). You can also alter your daily routine so that you're getting enough good quality sleep.

Having CFS/ME can have a major effect on many aspects of your life including relationships with your loved ones. You may find it frustrating and upsetting if people don't understand how exhausted you feel and how little you can do. Some people with CFS/ME feel that other people believe they are exaggerating their symptoms because they may not appear physically unwell.

You may find it helps to talk to other people who are affected by CFS/ME. Your GP will be able to give you contact details of support groups. These support groups will also be able to tell you about any financial help you may be entitled to if you can't stay in work.