Symptoms
Symptoms vary from person to person, and the severity of symptoms can vary from day to day, or even within a day.
The 4 main symptoms of ME/CFS are:
Fatigue
One of the main symptoms of ME/CFS is extreme physical and mental 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 ME/CFS describe their fatigue as overwhelming and a different type of tiredness from what they've experienced before.
Post-exertional malaise
This is where exercise makes the symptoms worse. Sometimes the effect is delayed and you'll feel exhausted a few hours after you've exercised, or even the next day.
Problems sleeping
Many people with ME/CFS also have problems with their sleep.
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
Cognitive difficulties
- problems remembering certain words, names or numbers
- difficulty concentrating or difficulty focusing on more than one thing at a time
- problems remembering things that happened recently
- being slow to speak or react to things
These problems are sometimes described "brain fog".
Other symptoms
Other symptoms of ME/CFS can include:
- a sore throat or sore glands that are not swollen
- flu-like symptoms
- feeling dizzy or sick
- orthostatic intolerance - a clinical condition in which symptoms such as light-headedness, near-fainting or fainting, impaired concentration, headaches, dimming or blurring of vision, forceful beating of the heart, fast or irregular heartbeats (palpitations), tremors and chest pain occur or worsen on standing up and are improved (although not necessarily resolved) by sitting or lying down.
- Increased sensitivity to temperature leading to profuse sweating, chills, hot flushes, or feeling very cold
- neuromuscular symptoms, including twitching and jerking of muscles
- intolerance to alcohol, or to certain foods and chemicals
- increased sensitivity of the senses, including to light, sound, touch, taste and smell
- pain, including pain on touch, muscle pain, headaches, eye pain, abdominal pain or joint pain without acute redness or swelling.
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 ME/CFS
People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.
Moderate ME/CFS
People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
Severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
Very severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
There may be times when your symptoms get worse. These periods are known as flare-ups or relapses.
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 may also be able to refer you to a ME/CFS specialist if they think it would help you.
Management
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 managements
There are a number of specialist management 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.
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.
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