Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. The cause of ME/CFS is unknown.

ME/CFS can affect anyone, including children.

Symptoms of ME/CFS

The 4 main symptoms of ME/CFS are:

• feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
• sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
• problems with thinking, concentration and memory (brain fog)
• symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM)

Some people with ME/CFS may also have pain in different parts of the body or flu-like symptoms, such as high temperature, headache and aching joints or muscles.

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

Diagnosing ME/CFS

There's no specific test for ME/CFS, so it's diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.

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

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

Treating ME/CFS

While there's currently no cure for ME/CFS, there are treatments that may help you manage the condition and relieve the symptoms.

Treatments include:

• energy management – where you're given advice about how to make best use of the energy you have without making your symptoms worse
• cognitive behavioural therapy (CBT)
• medicine to control symptoms such as pain and sleeping problems

People with ME/CFS will need to adapt their daily routine and pattern of activities on a long-term basis. There may be periods when your symptoms get better or worse.

Living with ME/CFS

Living with ME/CFS 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.

ME/CFS 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 ME/CFS.

 Symptoms Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) 

There are 4 main symptoms of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

Extreme tiredness (fatigue)

The extreme tiredness (fatigue) associated with ME/CFS does not go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities.

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

Problems sleeping

Many people with ME/CFS also have serious problems with their sleep that do not get better.

You may find that:

• you do not feel refreshed after sleeping – like you have not had a proper good night's rest
• you keep waking up during sleep
• you feel stiff, tired or have flu-like symptoms when waking up
• you feel very tired and sleepy during the day

Problems with thinking, memory and concentration

If you have ME/CFS, it's also common to:

• have problems remembering certain words, names or numbers
• have difficulty concentrating or difficulty focusing on more than one thing at a time
• have problems remembering things that happened recently
• be slow to speak or react to things

These problems are sometimes described "brain fog".

Post-exertional malaise (PEM)

Symptoms of ME/CFS can get worse after activity (called post-exertional malaise, or PEM).

PEM can be triggered by physical or mental activity, such as socialising or studying

PEM can happen hours or days after the triggering activity, and it can take weeks to recover.

Other symptoms

Other symptoms of ME/CFS can include:

• muscle or joint pain
• headaches
• a sore throat or sore glands that are not swollen
• flu-like symptoms
• feeling dizzy or sick
• fast or irregular heartbeats (heart palpitations)
• muscle twitches or spasms
• intolerance to alcohol or certain foods or chemicals
• being very sensitive to light, sound, touch, taste and smell
• having hot flushes or cold chills if the temperature changes
• feeling dizzy, sick or fainting when standing up from a sitting or lying position

Severity of symptoms

Most cases of ME/CFS are mild or moderate, but 1 in 4 people have severe symptoms.

If your symptoms are severe, a specialist should be involved in your treatment.

ME/CFS symptoms can be considered:

• mild – you’re able to care for yourself but may have problems moving around; you may be able to go to work or school, but will not have energy to do much else
• 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; you may also have problems sleeping at night
• severe – you may not be able to do any activity, or only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and need a wheelchair to get around; 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
• very severe – you may have to spend all your time in bed resting and be fully dependent on carers; you may need help eating, washing and going to the toilet; you may be extremely sensitive to light and noise; you may be unable to swallow and need to be fed using a tube

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

ME/CFS and work

If you have to take time off work, you may feel able to return to work in the future. But a sudden return to full time work may not be possible.

By law, your employer must make reasonable adjustments to help you do your job.

What else could it be?

The symptoms of ME/CFS are similar to those of other conditions.

If you think you may have ME/CFS it's important to see a GP to make sure you get a correct diagnosis. A GP should also be able to refer you to a ME/CFS specialist if they think it would help you.

 Diagnosis Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) 

There's no test for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), but there are clear guidelines to help doctors diagnose it.

A 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 ME/CFS 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.

Guidelines for diagnosing ME/CFS

Guidelines from the National Institute for Health and Care Excellence (NICE) say doctors should consider diagnosing ME/CFS if all the following apply and are not caused by another condition:

• fatigue (extreme tiredness)
• sleep problems
• issues with thinking and concentration
• symptoms are made worse by physical or mental activity

The doctor making the diagnosis may also ask you about other symptoms that can affect people living with ME/CFS, such as:

• muscle and joint pain
• headaches
• sore throat

Your GP may consult a specialist if they're unsure about the diagnosis or your symptoms are severe.

 Treatment Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) 

Treatments for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) aim to help relieve your symptoms.

Your treatment will be tailored to your symptoms.

You may find there are times when your symptoms get better, as well as times when your symptoms are more severe.

Treatment plans for ME/CFS

There's no single way of managing ME/CFS 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 ME/CFS.

Energy management

Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse.

As part of this treatment you may be asked to monitor your daily activities using a diary or apps on your phone.

Some people with ME/CFS have found that exercise programmes can make their symptoms better. But some also found it made no difference or actually made symptoms worse.

If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a healthcare professional (such as a physiotherapist) with experience in working with people with ME/CFS.

Graded exercise therapy (GET), which aims to gradually increase physical activity levels, is not recommended for people with ME/CFS.

Cognitive behavioural therapy (CBT)

Your doctor may discuss with you whether cognitive behavioural therapy (CBT) is a suitable option. CBT is a type of talking therapy that aims to help people manage ME/CFS by looking at different ways of thinking about having a long-term condition.

CBT aims to help you live with your symptoms. It does not directly treat the symptoms of ME/CFS.

If you choose to try CBT it’s important your therapist has specific training and experience in treating people with ME/CFS.

Medicine

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

Painkillers you buy from a pharmacy or supermarket can help ease headaches, as well as muscle and joint pain. A 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 ME/CFS who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed to help ease muscle pain.

Lifestyle changes

As well as specialist treatments for ME/CFS, 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 ME/CFS symptoms are making it difficult for you to shop or prepare food.

Some people with severe ME/CFS may be at risk of malnutrition, due to loss of appetite and difficulties chewing and swallowing.

You may be referred to a dietitian who has experience of working with people with ME/CFS.

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

Sleep, rest and relaxation

You may have sleep problems that make your ME/CFS 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 does not usually improve the symptoms of ME/CFS, 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 does not 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 ME/CFS 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.

Equipment

There may be equipment you can use to help with daily living, such as a wheelchair or a stairlift. You may also be eligible for support with your care and day-to-day living.

Further information:

• Household gadgets and equipment to make life easier

There's limited or no evidence to recommend:

• resting completely – there's no evidence this helps
• complementary medicine – there's not enough evidence that it's helpful for ME/CFS

You should not take up vigorous unsupervised exercise, such as going to the gym or for a run as this may make your symptoms worse.

Setbacks or relapses

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

They're a common part of ME/CFS 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