Chronic fatigue syndrome (myalgic encephalomyelitis)

Published by Bupa's Health Information Team, March 2010.

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 condition that causes extreme physical and mental tiredness that seriously interferes with a person's daily life.

About chronic fatigue syndrome

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

CFS/ME is recognised by the Department of Health as a genuine, long-term debilitating disease. However, it's still poorly understood because there are no known causes and a wide range of symptoms.

CFS/ME can affect any age group, but most commonly affects people in their 40s and 50s. The most common age of onset in children is 13 to 15, but it can occur in children as young as five. CFS/ME is more common in women than men, women are around four times as likely as men to develop the condition.

CFS/ME is thought to affect around 250,000 people in the UK. The condition affects people in different ways; some can still go to work or study but have to give up leisure and social activities, spending the weekend resting. Others can become seriously disabled, housebound and incapable of doing very much for many years.

Symptoms of chronic fatigue syndrome

CFS/ME causes extreme tiredness. This is very different from any 'normal' tiredness that you have experienced before. It's often described as making you feel completely drained. CFS/ME may happen over several months or years and your health may deteriorate.

CFS/ME 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, may 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 after exertion at a level that you used to be able to manage without feeling tired
• muscle and joint pain, but no swelling
• 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
• visible muscle twitching
• irritable bowel syndrome symptoms such as constipation or diarrhoea and bloating
• mood swings

Your symptoms may vary throughout the day - some days they may be mild and other days more troublesome.

Most people with CFS/ME find that their symptoms come and go, often returning after illness or stress.

Causes of chronic fatigue syndrome

The exact reasons why you may develop CFS/ME aren't fully understood at present.

Some people develop CFS/ME after an infection, but it's not the same as the normal tiredness that often follows infection with the flu virus. Many people who develop CFS/ME were 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. Some research indicates that your nervous system is also involved in CFS/ME and that genetics may play a part.

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

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. In the meantime, your GP will be able to help you manage your symptoms.

There are no tests for CFS/ME. Your GP will ask about your symptoms, examine you and ask about your medical history. You may need to have blood tests to rule out other conditions that can cause similar symptoms, such as hypothyroidism.

Your GP will usually be able to diagnose CFS/ME after you have had symptoms for four months as an adult. A paediatrician (a doctor who specialises in children's health) will usually be able to diagnose children and young people after they have had symptoms for three months.

If you're diagnosed with CFS/ME, your GP will give you information about the condition and available treatments. He or she may also put you in touch with support services or an occupational therapist, who can make adjustments to your home, work or student environment. You may also be referred to a doctor who specialises in CFS/ME.

Treatment of chronic fatigue syndrome

Treatment for CFS/ME aims to manage your symptoms. There isn't one specific treatment that works for everyone. It depends on your specific symptoms. Most treatments are aimed at people with mild to moderate symptoms. Your doctor may recommend one or more of the following treatment options.

You may need a review of your treatment every few months by either your GP or a doctor who specialises in CFS/ME.

Self-help

Lots of rest during an attack or relapse will help to relieve your symptoms. If you're having problems sleeping, get into a routine by going to bed at the same time every night. Try having a hot, relaxing bath or a milky drink before you go to bed.

Pacing is a way of managing your lifestyle, so that you find a level of physical and mental activity that you're comfortable with. Then you can make gradual increases, making sure you get enough rest after doing physical activity and not doing large bursts of exercise that can set you back. By pacing yourself in this way, you can make the most of your energy.

Massage and stretching may help to relieve muscle pain.

It's important to eat a healthy, balanced diet including at least five portions of fruit and vegetables a day and slowly absorbed carbohydrates such as oats, beans and pulses.

Some people have intolerance to certain foods such as wheat or dairy products, or develop irritable bowel syndrome symptoms. It may be worth keeping a food diary to see if any foods trigger symptoms. Avoid fatty or sugary foods, especially if you're unable to move around much.

Medicines

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

Your doctor may prescribe antidepressants, often if one of your symptoms is depression. 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 that helps to challenge negative thoughts, feelings and behaviour.

CBT is based on the belief that people learn most of their unhealthy ways of thinking and behaving over a long period of time. Using a set of structured techniques, a CBT therapist aims to identify how you're thinking and how this can cause problematic feelings and behaviour. You will then learn to change this way of thinking. This will help you react more positively, which will boost your self-esteem and confidence.

If you're referred for CBT, it doesn't mean your doctor believes your CFS/ME is 'all in your mind'. There is good evidence showing that CBT can help some people cope with their symptoms.

Physical therapies

Graded exercise therapy means starting with an activity that you can do comfortably, such as walking, and increasing your level of activity every few days.

Complementary therapies

Complementary therapies such as relaxation therapy, acupuncture, homeopathy or supplements such as coenzyme Q10 are sometimes recommended for people with CFS/ME. However, although some people may find them useful, there is very little scientific evidence to show that these are effective.

Living with chronic fatigue syndrome

CFS/ME affects different people in different ways. Many people find that their symptoms improve over time and, more rarely, some make a complete recovery. Unfortunately, others find that their lives are severely 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, using treatment programmes such as pacing and graded exercise therapy. 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. People with CFS/ME sometimes feel that other people believe they are exaggerating their symptoms because they may not appear unwell. You may find it frustrating and upsetting that people don't always empathise with how exhausted you feel and how little you're capable of doing.

It may be helpful 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're no longer able to work.

For answers to frequently asked questions on this topic, see Common questions.

For sources and links to further information, see Resources.