Chronic fatigue syndrome (Myalgic Encephalomyelitis)
Introduction
Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. For most people, symptoms will improve over time.
CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms (see below).
There is no cure for CFS, but treatment can ease the symptoms, which include muscle pain and headaches (see symptoms of CFS for more information).
Who is affected?
Around 250,000 people in the UK have CFS.
Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.
How it affects quality of life
Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms. These are defined as follows:
- Mild: you are able to care for yourself, but may need days off work to rest.
- Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.
- Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficulty concentrating.
- Very severe: you are unable to carry out any daily tasks for yourself and need bed rest for most of the day. Often, in severe cases, you may experience an intolerance to noise and become very sensitive to bright lights.
Outlook
CFS can last for years. For most people, symptoms improve over time. Many people make a full recovery and return to work and normal activities. Others may have symptoms that persist for long periods.
See treating CFS for information on how symptoms can be managed to help you live a normal or near-normal life.
Chronic fatigue syndrome or ME?
Chronic fatigue syndrome (CFS) is the term often used and preferred by doctors. This is because the main symptom is usually chronic fatigue. There is also little evidence of brain and spinal cord inflammation, as the term "ME" suggests. ME is thought to be too specific to cover all the symptoms.
ME is often the preferred term of people who have CFS. This is because they feel "fatigue" is too general, and does not reflect the severity and different types of fatigue. They also feel that even though fatigue occurs in most cases, it is not the only symptom people experience.
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Symptoms
If you have chronic fatigue syndrome (CFS), there will be times when your symptoms improve and you'll be able to do many normal, everyday activities.
However, at other times your symptoms may flare up and get worse, affecting your daily life.
Fatigue
The main symptom of CFS is severe fatigue (exhaustion) following mental or physical activity. This does not go away with sleep or rest, and limits your usual activities.
Fatigue is mental as well as physical. Some people describe it as overwhelming. You may feel that:
- It is a different type of tiredness from what you have experienced before.
- After sleeping you do not feel refreshed.
- It is not due to exhaustion.
- It is not simply a loss of motivation, which people with depression often experience.
Exercising can make symptoms worse. This is called post-exertional malaise, or "payback". The effect of this is sometimes delayed. For example, if you were to play a game of sport, the resulting fatigue may not develop for a few hours afterwards, or even the next day.
Other symptoms
There are other common symptoms as well as fatigue, although most people do not have all of them. They include:
- muscular pain, joint pain and severe headaches
- poor short-term memory and concentration, and difficulty organising your thoughts and finding the right words ("brain fog")
- painful lymph nodes (small glands of the immune system)
- stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipation, diarrhoea and nausea
- sore throat
- sleeping problems, such as insomnia and feeling that sleep is not refreshing
- sensitivity or intolerance to light, loud noise, alcohol and certain foods
- psychological difficulties, such as depression, irritability and panic attacks
- less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature
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Causes
The cause of chronic fatigue syndrome (CFS) is unknown, but there are several theories.
Some experts think that a viral infection such as glandular fever can trigger the condition. Tiredness is normal after a viral infection, but this does not explain why symptoms persist and get worse in CFS.
Contributing factors
The main factors thought to increase the risk of developing CFS are listed below:
- an inherited genetic susceptibility (it is more common in some families)
- viral infections such as glandular fever, which weaken the immune system
- exhaustion and mental stress
- depression
- a recent traumatic event, such as bereavement, divorce or redundancy
- childhood trauma
Exacerbating factors
The following factors are thought to make CFS worse:
- recurring viral or bacterial infections
- not being active enough, or being too active
- stress
- poor diet
- being socially isolated or feeling frustrated and depressed
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Diagnosis
There is no test for chronic fatigue syndrome (CFS), but there are clear guidelines to help doctors diagnose it.
Many people consult their GP because they think they have CFS, but only a small minority go on to be diagnosed with it.
CFS is not diagnosed in people who simply feel tired all the time. There are other symptoms that help to confirm the diagnosis (see symptoms of CFS for more information).
Your GP will ask you about your medical history and carry out a physical examination. You may have blood tests and scans to rule out other conditions, such as anaemia (not enough red blood cells), an underactive thyroid gland or liver and kidney problems.
NICE guidelines for diagnosing CFS
Guidelines released in 2007 from the National Institute for Health and Clinical Excellence (NICE) state that doctors should consider diagnosing CFS if a person has fatigue and all of the following apply:
- There was a clear starting point.
- It is persistent and/or recurrent.
- It is unexplained by other conditions.
- It substantially reduces the amount of activity you can do.
- It feels worse after physical activity.
The person should also have one or more of these symptoms:
- difficulty sleeping, or insomnia
- muscle or joint pain without inflammation (swelling)
- headaches
- painful lymph nodes that are not enlarged
- sore throat
- poor mental function, such as difficulty thinking
- symptoms getting worse after physical or mental exertion
- feeling unwell or having flu-like symptoms
- dizziness or nausea
- heart palpitations, without heart disease
This diagnosis should be confirmed by a clinician after other conditions have been ruled out and the above symptoms have persisted for four months in an adult and three months in a child or young person.
For more information, read the NICE guidelines on CFS.
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Treatment
There is no cure for chronic fatigue syndrome (CFS) but treatments can help relieve the symptoms.
The effectiveness of treatments depends on how CFS affects you. Early diagnosis, balancing rest with activity, medication to control certain symptoms and self-help measures can all help (see below).
Simply diagnosing CFS and receiving specialist advice about how to deal with it can help.
CFS may last for years. However, many people recover or at least adjust their lifestyle to improve their symptoms.
Treatment programme
The National Institute for Health and Clinical Excellence (NICE) advises that an individual programme of treatment should be offered to you with the aims of:
- maintaining and if possible extending your emotional and physical abilities
- managing the physical and emotional effects of your symptoms
You may be offered the treatments explained below, but remember: what works for one person may not work for you.
The benefits and risks of each treatment should be explained to you, as some treatments could make your symptoms worse. Both you and the healthcare professional treating you will decide on your treatment programme.
If your symptoms continue to get worse for several days after trying a certain treatment, or if your symptoms are particularly severe, contact the healthcare professional who is treating you. It may be necessary to amend your treatment programme.
Cognitive behavioural therapy
Cognitive behavioural therapy (CBT) is a type of therapy that aims to change the way that you think, feel and behave. CBT helps you realise that your problems are often created by you. It is not the situation itself that is making you unhappy but how you think about it and react to it.
Through talking to a professional therapist, you identify the thoughts and feelings that are causing certain behaviours. Your therapist will help you find ways to change your thought patterns and your behaviour so that you can cope better with the emotional impact of your symptoms.
Ideally, your CBT therapist will have experience in dealing with CFS and treatment will be offered on a one-to-one basis. The treatment will be tailored to your needs and may include some of the following:
- helping you to accept your diagnosis
- challenging any thoughts that could prevent your symptoms improving
- trying to increase your sense of control over your symptoms
See the topic about CBT for more information about this type of treatment.
Graded exercise therapy
Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. This will usually involve aerobic exercise (exercise that raises your heart rate) such as swimming or walking. You will have your own exercise programme adapted to your own physical capabilities.
GET should only be carried out by a trained specialist with experience in CFS and, if possible, should be offered on a one-to-one basis. After finding your "baseline" in the exercise (what you can comfortably do already) you will gradually increase:
- the length of time that you do the exercise
- the exercise intensity
As part of your exercise programme, you and your therapist will set goals, such as being able to walk to the shops or carry out some gardening. It may take months for you to achieve these goals but it is very important that you do not to exceed the exercise duration and intensity that has been set for you.
Activity management
Activity management is another aspect of your treatment programme that involves setting individual goals and gradually increasing your activity levels. You may be asked to keep a diary of your current activity and rest periods to establish your baseline. Activities can then be gradually increased in a way that you find manageable.
Medication
Your treatment may also involve taking medication, although this will depend on your symptoms. For information about your medication, see the patient information leaflet that comes with it.
Over-the-counter painkillers can help to ease any muscle and joint pain and headaches you may have. Stronger painkillers can also be prescribed by your GP, although they should only be used on a short-term basis.
If you have chronic (long-term) pain, you may be referred to a pain management clinic. There are about 300 of these across the UK, mostly located in hospitals.
Antidepressants can be useful for people with CFS who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed. Amitriptyline is not suitable for everyone – for example, it may not be suitable if you have a history of heart problems. It can also cause side effects such as:
- a dry mouth
- blurred vision
- dizziness
- drowsiness
Lifestyle advice
As well as these treatments you may find the lifestyle advice below helpful.
Pacing
Pacing is an important way of controlling CFS symptoms. It involves balancing periods of activity with periods of rest.
Pacing means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long-term. Over time, you can gradually increase your periods of activity, while making sure they are balanced with periods of rest.
Learning how to make the most of your energy helps increase the amount that you can do. However, you may need to arrange your daily and weekly activities around when you can be active and when you will need to rest.
If you pace your activities at a level that is right for you, rather than rushing to do as much as possible in a short space of time, you may be able to make steady progress.
Other self-help techniques
The following recommendations may also help:
- Avoid stressful situations.
- Avoid alcohol, caffeine, sugar and sweeteners.
- Avoid other food and drink that you are sensitive to.
- Eat small, regular meals.
- Spend time relaxing.
Complementary therapies
There is not enough evidence that complementary therapies are effective treatments for CFS. Therefore, the NHS does not advise their use. However, some people use these therapies to control their symptoms, and find them helpful.
Relapses
A relapse is when your symptoms get worse for some time, so you are unable to function at the level you previously were.
Relapses are a common part of CFS and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there may not be a clear cause.
The healthcare professionals treating you can help you manage your relapse, by:
- including more breaks with your current levels of activities
- teaching you relaxation and breathing techniques
- encouraging you to be optimistic about your recovery
Over time and with treatment, many people with CFS begin to show improvement.
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