Chronic Fatigue Syndrome

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Introduction

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. There's some debate over the correct term to use for the condition, but these pages will refer to it as CFS/ME.

CFS/ME can affect anyone, including children. It's more common in women, and tends to develop between your mid-20s and mid-40s. 

This page covers:

Symptoms

Diagnosis

Treatment

Causes

Living with CFS/ME

Symptoms of CFS/ME

The main symptom of CFS/ME is feeling extremely tired and generally unwell. 

In addition, people with CFS/ME may have other symptoms, including:

Most people find overexercising makes their symptoms worse. 

The severity of symptoms can vary from day to day, or even within a day. 

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, so it's important to see your GP to get a correct diagnosis.

Read more about the symptoms of CFS/ME

Diagnosing CFS/ME

There isn't a specific test for CFS/ME, so it's diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms. 

Your GP will ask about your symptoms and medical history. You may also have blood and urine tests.

As the symptoms of CFS/ME are similar to those of many common illnesses that usually get better on their own, a diagnosis of CFS/ME may be considered if you don't get better as quickly as expected.

Read more about diagnosing CFS/ME.

Treating CFS/ME

Treatment for CFS/ME aims to relieve the symptoms. Your treatment will depend on how CFS/ME is affecting you.

Treatments include:

Most people with CFS get better over time, although some people don't make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully.

Read more about treating CFS.

Causes of CFS/ME

It's not known what causes CFS/ME, but there are a number of theories - for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness. 

Suggested causes or triggers for CFS/ME include:

  • viral infections, such as glandular fever
  • bacterial infections, such as pneumonia
  • problems with the immune system
  • a hormone imbalance 
  • mental health problems, such as stress, depression and emotional trauma
  • your genes - CFS/ME seems to be more common in some families

Living with CFS/ME

Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.

CFS/ME can also affect your mental and emotional health, and have a negative effect on your self-esteem.

As well as asking your family and friends for support, you may find it useful to talk to other people with CFS/ME.

ME Association is a charity that provides information, support and practical advice for people affected by the condition. You can find a local support group on their website.

Symptoms

Symptoms

The main symptom of CFS/ME is feeling extremely tired and generally unwell.

Symptoms vary from person to person, and the severity of symptoms can vary from day to day, or even within a day. 

Extreme tiredness (fatigue)

The main symptom of CFS/ME is extreme physical and mental tiredness (fatigue) that doesn't go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities.

Most people with CFS/ME describe their fatigue as overwhelming and a different type of tiredness from what they've experienced before.

Other symptoms of CFS/ME

Other symptoms of CFS/ME include:

Exercising usually makes the symptoms of CFS/ME worse. Sometimes the effect is delayed and you'll feel very tired a few hours after you've exercised, or even the next day.

Severity of symptoms

Most cases of CFS/ME are mild or moderate, but up to one in four people have severe symptoms. If your symptoms are severe, a specialist should be involved in your treatment.

CFS/ME symptoms can be considered:

  • mild - you're able to carry out everyday activities, such as work, studies or housework, but with difficulty; you may need to give up hobbies or social activities so you can rest in your spare time 
  • moderate - you may have difficulty moving around easily and problems carrying out daily activities; you may not be able to work or continue with your education and may need to rest often; and you may also have problems sleeping at night 
  • severe - you may only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and may need a wheelchair to get around; and you may also have difficulty concentrating, be sensitive to noise and light, and take a long time to recover after activities involving extra effort, such as leaving the house or talking for long periods

There may be times when your symptoms get worse. These periods are known as setbacks or relapses.

Diagnosis

Diagnosis

There's no test for chronic fatigue syndrome (CFS), but there are clear guidelines to help doctors diagnose the condition.

Your GP should ask you about your medical history and give you a physical examination.

They may also offer you tests like blood tests or urine tests to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems.

It can take a while for CFS/ME to be diagnosed because other conditions with similar symptoms need to be ruled out first. 

In the meantime, you may be given some advice about managing your symptoms.

Read more about lifestyle advice for CFS/ME

Guidelines for diagnosing CFS/ME

Guidelines from the National Institute for Health and Care Excellence (NICE) say doctors should consider diagnosing CFS/ME if a patient has extreme tiredness that can't be explained by other causes and the tiredness:

  • started recently, has lasted a long time, or keeps coming back
  • means you can't do the things you used to do
  • gets worse after activity or gentle exercise, such as a short walk

You must also have some of these symptoms:

Your GP should consult a specialist if they're unsure about the diagnosis or if you have severe symptoms.

If a child or young person under 18 has symptoms of possible CFS/ME, they should be referred to a paediatrician within six weeks of first seeing their doctor about their symptoms.

As the symptoms of CFS/ME are similar to those of many common illnesses that usually get better on their own, a diagnosis of CFS/ME may be considered if you don't get better as quickly as expected.

The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least:

  • four months in an adult
  • three months in a child or young person

For more detailed information, see the NICE guidelines on how CFS/ME is diagnosed.

Treatment

Treatment

Treatments for CFS/ME aim to help relieve your symptoms.

Your treatment will be tailored to your symptoms. Early diagnosis, taking medication to control certain symptoms, and making lifestyle changes can all help.

CFS/ME can last a long time, but most people's symptoms will improve with time.

Some people make a full recovery and can return to their previous activities. Others continue to have symptoms or periods when their symptoms get worse.

Treatment plans for CFS/ME

There's no single way of managing CFS/ME that works for everyone, but there are a number of treatment options.

The National Institute for Health and Care Excellence (NICE) says you should be offered a treatment plan tailored to your symptoms.

Your doctor should discuss all of the options with you, and explain the benefits and risks of any treatment.

They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.

You may need advice about making lifestyle changes, specialist treatments, or a combination of both.

If your symptoms are severe, your doctor should ask a specialist for advice.

Your treatment plan should be reviewed regularly.

Specialist treatments

There are a number of specialist treatments for CFS/ME.

Cognitive behavioural therapy (CBT)

If you have mild or moderate CFS/ME, you should be offered cognitive behavioural therapy (CBT).

CBT is a talking treatment that can help you manage CFS/ME by changing the way you think and behave.

It can help you to:

  • accept your diagnosis
  • feel more in control of your symptoms
  • challenge feelings that could prevent your symptoms improving 
  • gain a better understanding of how your behaviour can affect the condition

Your CBT therapist will ideally have experience of dealing with CFS/ME and treatment will be offered on a one-to-one basis.

Using CBT doesn't mean CFS/ME is considered to be a psychological condition. It's used to treat a variety of long-term conditions.

Graded exercise therapy (GET)

Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity.

It usually involves exercise that raises your heart rate, such as swimming or walking. Your exercise programme will be adapted to your physical capabilities.

GET should only be carried out with the help of a trained specialist with experience of treating CFS/ME and, if possible, it should be offered on a one-to-one basis.

After finding out what you can already do comfortably, the length of time you exercise and the intensity will gradually be increased.

As part of your exercise programme, you and your therapist will set goals, such as walking to the shops or doing some gardening. It may take weeks, months or even years for you to achieve these goals, but it's important not to try to do too much too soon.

Activity management

Activity management 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 you find manageable.

Medication

There's no specific medication for treating CFS/ME, but medication can be used to relieve some of the symptoms.

Over-the-counter painkillers can help ease headaches, as well as muscle and joint pain. Your GP can prescribe stronger painkillers, although they should only be used on a short-term basis.

You may be referred to a pain management clinic if you have long-term pain.

Antidepressants can be useful for people with CFS/ME who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed to help ease muscle pain.

NICE has more information and advice about specialist CFS/ME care

Lifestyle changes

As well as specialist treatments for CFS/ME, making lifestyle changes can also help.

Diet and supplements

It's important you eat regularly and have a healthy, balanced diet. You should be offered practical advice about how to achieve this if, for example, your CFS/ME symptoms are making it difficult for you to shop or prepare food.

If you feel sick (nauseous), eating starchy foods, eating little and often, and sipping drinks slowly may help. If this doesn't work, medication can be prescribed.

Diets that exclude certain food types aren't recommended for people with CFS/ME. There's also insufficient evidence to recommend supplements, such as vitamin B12, vitamin Cmagnesium, or co-enzyme Q10.

Sleep, rest and relaxation

You may have sleep problems that make your CFS/ME symptoms worse. For example, you may:

  • have problems getting to sleep
  • have unrefreshing or restless sleep
  • need an excessive amount of sleep
  • sleep during the day and be awake at night

You should be given advice about how to establish a normal sleeping pattern. Having too much sleep doesn't usually improve the symptoms of CFS/ME, and sleeping during the day can stop you sleeping at night.

You should change your sleep pattern gradually, and your doctor should review how it's going regularly. If your sleep doesn't improve after making changes, you may have an underlying sleep problem that will need to be addressed.

It's likely you'll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.

If you have severe CFS/ME and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.

Other lifestyle changes to manage CFS/ME

Other ways to manage CFS/ME include:

  • equipment - some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
  • changes in your place of work or study - when you're ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return

There's limited or no evidence to recommend:

  • pacing - this is a technique that many people with CFS/ME find helpful for managing their symptoms; the general aim is to balance rest and activity to avoid making your fatigue and other symptoms worse, but there hasn't been enough research into pacing to confirm whether it improves CFS/ME or has any risks
  • resting completely - there's no evidence this helps
  • complementary medicine - there isn't enough evidence that it's helpful for CFS/ME 

You shouldn't take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.

NICE has more information on managing CFS/ME

Setbacks or relapses

A setback or relapse is when your symptoms get worse for a period of time.

They're a common part of CFS/ME and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there's no clear cause.

The doctors treating you can help you manage a setback or 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

NICE has more information and advice about managing setbacks and relapses.