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Chronic Fatigue Syndrome (ME) - A Guide

Causing long-term tiredness (fatigue) - chronic fatigue syndrome (CFS) affects everyday life. It does not go away with sleep or rest.

Introduction
Symptoms of chronic fatigue syndrome
Causes of chronic fatigue syndrome
Diagnosing chronic fatigue syndrome
Treating chronic fatigue syndrome

Introduction

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 terms are commonly used (see box, below left).

There is no cure for CFS, so treatment tends to focus on easing the symptoms. These include muscle pain and headaches (see Symptoms and Treatment, above).



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 serious is it?

Most cases 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 may last for years. Most people improve over time and some people recover and are able to resume work and normal activities.

However, others will continue having symptoms or may relapse, and some remain housebound.

The outlook for young people is more optimistic.

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Symptoms of chronic fatigue syndrome

If you have chronic fatigue syndrome (CFS), there will be times when your symptoms improve. You will be able to do many normal, everyday activities.

However, at other times your symptoms can flare up and get worse. This affects your daily life.

Fatigue

The main symptom of CFS is severe fatigue (tiredness) 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. 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
  • difficulty organising your thoughts and finding the right words
  • 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 disturbed sleep
  • 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 of chronic fatigue syndrome

The cause of chronic fatigue syndrome (CFS) is unknown. 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.

It is more likely that CFS is caused by a combination of physical and psychological factors, which also affect how severe the condition is and how long it lasts.

Contributing factors

The main factors thought to increase the risk of developing CFS are:

  • 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 (see Useful links)

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 and/or feeling frustrated and depressed

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Diagnosing chronic fatigue syndrome

There is no test to diagnose chronic fatigue syndrome (CFS). Many people consult their GP because they think they have CFS, but only a small minority are 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.

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 (2007) from the National Institute for Health and Clinical Excellence (NICE) state that doctors should consider diagnosing CFS if a person has fatigue with all of the following:

  • a clear starting point
  • persistent and/or recurrent
  • unexplained by other conditions
  • a substantial reduction in activity level
  • characterised by post-exertional malaise and/or fatigue (feeling worse after physical activity)

and one or more of the following symptoms:

  • difficulty sleeping, or insomnia
  • muscle and/or joint pain without inflammation
  • headaches
  • painful lymph nodes that are not enlarged
  • sore throat
  • cognitive dysfunction, such as difficulty with thinking
  • physical or mental exertion that makes symptoms worse
  • general malaise or flu-like symptoms
  • dizziness and/or nausea
  • 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.

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Treating chronic fatigue syndrome

There is no cure for chronic fatigue syndrome (CFS) so treatment focuses on 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, people do 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 you should remember that 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 who is 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, you should contact the healthcare professional who is treating you. It may be necessary to amend your treatment programme.

Cognitive behavioural therapy (CBT)

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

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 carrying 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 more information about your medication, see the patient information leaflet that comes with it.

Over-the-counter painkillers can help to ease muscle and joint pain and headaches. 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:

  • dry mouth
  • blurred vision
  • dizziness
  • drowsiness

Lifestyle advice

In addition to 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.

Living with a chronic (long-term) condition such as CFS, you may benefit from pacing. 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


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