Overview

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.

Diagnosis

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

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 that in order for doctors to start suspecting ME/CFS
all 4 of the main symptoms should be present for a minimum of 6 weeks in adults and 4 weeks in children and young people
AND
the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels 
AND
symptoms are not explained by another condition.

All of these symptoms should be present.

• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
• Post-exertional malaise after activity in which the worsening of symptoms:
• is often delayed in onset by hours or days is disproportionate to the activity
• has a prolonged recovery time that may last hours, days, weeks or longer.
• Unrefreshing sleep or sleep disturbance (or both), which may include:
• feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia.
• Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Other symptoms may include

• orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
• temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
• neuromuscular symptoms, including twitching and myoclonic jerks
• flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
• intolerance to alcohol, or to certain foods and chemicals
• heightened sensory sensitivities, including to light, sound, touch, taste and smell
• pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

The 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 ME/CFS, they may be referred to a paediatrician.

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.

The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least 3 months.

NICE also suggests that when ME/CFS is suspected, people are given personalised advice about managing their symptoms and also that they are advised:

• not to use more energy than they belive they have − they should manage their daily activity and not 'push through' their symptoms.
• to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities).
• to maintain a healthy balanced diet, with adequate fluid intake.

Management

Management for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to help relieve your symptoms.

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

ME/CFS can last a long time, but many 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.

Management plans for ME/CFS

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

NICE advises referral to a ME/CFS specialist team where available who will
Carry out and record an assessment that looks at the patient as a whole and includes , medical, mental health, physical and dietary assessments to confirm the person's diagnosis and also to help in future management.

Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers.

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 managements, or a combination of both.

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

Your management plan should be reviewed regularly.

Specialist managements

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

Energy management

Energy management is a strategy 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 management you may be asked to monitor your daily activities using a diary, or apps on your phone.

An exercise plan may be suitable for some people living with CFS /ME, but exercise programmes such as graded exercise therapy (GET) are no longer recommended for everyone with ME/CFS.

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

People with ME/CFS may have a lower tolerance to medicines and so should consider starting medicines at a lower dose.

Over-the-counter painkillers 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.

If you feel sick, eating starchy foods, eating little and often, and sipping drinks slowly may help. If this does not work, medicine can be prescribed.

People with ME/CFS may be at risk of vitamin D deficiency, especially those who are housebound or bedbound. You should speak to your doctor for advice on vitamin D supplementation.

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.

Other lifestyle changes to manage ME/CFS

Other ways to manage ME/CFS 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:

• resting completely – there's no evidence this helps
• complementary medicine – there is 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.

Cognitive behavioural therapy (CBT)

If you have mild or moderate ME/CFS, your doctor may talk to you about CBT. They should explain that it may help you manage your symptoms but is not a cure.

CBT is a talking therapy that can help you manage ME/CFS by changing the way you think and behave and can help reduce the distress associated with having a long-term illness.

Your doctor can refer you if you would like to use CBT to support you in managing your symptoms.

In Wales the SilverCloud programme is a free online NHS service based on CBT and there is an option to self-refer although you can also be referred by your doctor. Find out more about the SilverCloud service

Using CBT does not mean ME/CFS is considered to be a psychological condition or that patients are thought to have abnormal beliefs or behaviours that may be the cause of their condition. It's used to help people with a variety of long-term conditions.

Flare-ups or relapses

A flare-up is when your symptoms get worse for a few days.

A relapse is when your symptoms get worse for a longer period of time than a flare-up and large changes in your energy management are needed.

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 flare-up or relapse by:

For a flare-up:

• identifying possible triggers, such as illness or overexertion (in some
• cases, there may be no clear trigger)
• temporarily reducing your activity level
• monitoring symptoms, recognising that although flare-ups are temporary, some will develop into a relapse
• not returning to usual activity levels until the flare-up has resolved.

For a relapse:

• reducing, or even stopping, some activities
• increasing the frequency or length of rest periods
• reassessing energy limits to stabilise symptoms.

You can find more information about the latest NICE guidance on the NICE website