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

Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is a long term neurological condition. It affects many systems in the body, most often the nervous system and the immune system.

ME/CFS is seen in more women than men. Children and adults of any age can get it, and so can people from all ethnic groups. The tiredness doesn't go away with sleep or rest, and it affects everyday life. Doctors sometimes diagnose it as post viral fatigue syndrome (PVFS).

ME/CFS affects everyone a little differently. Some days your symptoms ease and you can manage a few everyday activities. On other days they get worse and make daily life harder. You won't necessarily have every symptom.

If you notice new symptoms, talk to your doctor or specialist, because they may have nothing to do with ME/CFS.

If you have periods, you may find your symptoms get worse at certain times in your menstrual cycle.

Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), has 4 main symptoms.

ME/CFS can cause debilitating fatigue that is:

• made worse by activity
• not caused by excessive cognitive, physical, emotional or social effort
• not significantly relieved by rest

Post exertional malaise (PEM) is when your symptoms get worse even after only a little physical or mental activity. If you have PEM, you might find the symptoms get worse hours or days after the activity. They may also seem out of proportion to how much you actually did.

Recovery from PEM can take a long time. The symptoms might last hours, days, weeks or longer.

You might wake up feeling unrefreshed after sleep, and you might have sleep disturbance as well. You might:

• feel exhausted
• feel flu-like and stiff on waking
• experience broken or shallow sleep
• have an altered sleep pattern
• experience hypersomnia (feel sleepy during the day)

ME/CFS can also cause cognitive difficulties, sometimes described as 'brain fog'. These can include:

• problems finding words or numbers
• difficulty in speaking, slowed responsiveness
• short-term memory problems
• difficulty concentrating or multitasking

Simple physical or mental activities, or a combination of them, can leave people with ME/CFS feeling completely exhausted. They can also bring on more of the other symptoms through PEM.

Other symptoms of ME/CFS include:

• feeling generally unwell
• pain
• poor temperature control
• dizziness
• being very sensitive to light and sound
• nausea
• loss of appetite
• muscle pain (myalgia)

Living with the condition can affect your life a great deal, so you might feel frustrated, anxious or low, and you may become depressed. That does not mean ME/CFS is a mental health condition.

Doctors still don't know for certain what causes ME/CFS (myalgic encephalomyelitis, also called chronic fatigue syndrome), and more research is needed. Several factors may be involved, and there may be a number of different types of the condition.

ME/CFS can appear suddenly, or it can come on more slowly over time.

It may be triggered by:

• infection
• trauma
• surgery
• stressful major life events

In some cases, there may be no identifiable trigger.

There's no single test that can detect ME/CFS. A doctor may diagnose myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) when a person has the 4 main symptoms of ME/CFS persistently for a minimum of 6 weeks in adults, or 4 weeks in children and young people.

The sooner the illness is recognised, the sooner you can get help to manage your symptoms. Many people with ME/CFS find it helps to keep a diary of their symptoms and take it to their doctor or specialist.

Your doctor will usually:

• do a physical and mental examination to rule out other conditions
• ask about recent travel, tick or insect bites, unusual infections, and drug and alcohol use
• review the medicine you're taking now
• arrange tests

They may be able to make a diagnosis after 3 months of seeing a pattern of symptoms. Anyone suspected of having ME/CFS should be considered for routine blood tests, which look for other possible illnesses. If the diagnosis is still in doubt, more investigation may be needed.

Some people with ME/CFS also have another long-term condition, so talk to your doctor about how to manage the symptoms.

There's no cure for ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome), but there are ways to help manage your symptoms. The illness is complex, so different things work for different people. Your doctor may be able to support you in managing your individual symptoms.

To decide what treatment is right for you, you should look at the evidence, including published research and patient surveys. Make sure you fully understand what a treatment involves before you decide. You have the right to decline any treatment option you don't feel comfortable with.

Your doctor may suggest some of the following.

Reviewing your medicines

Your doctor may suggest reviewing and changing the medicines you take. They'll consider other conditions you may already be receiving treatment for alongside the ME/CFS symptoms that need treating. They may also need to think about the combined effect of medicine for your symptoms and medicine for other conditions. This matters because sensitivity to medicine is a feature of ME/CFS.

Food and nutrition

If loss of appetite and food intolerances make it hard to eat a good balance of nutrients, speak to your doctor for advice.

Support from a therapist

Your doctor may work with you, or refer you to another therapist, to suggest aids, activities or support that can help you recover or adjust.

Pacing

Pacing yourself means stopping activities before you feel the impact, so that you have energy in reserve. It's easy to do too much on a good day and then feel the impact later. Balancing periods of activity and rest, and noticing which activities demand most from you, can reduce the number of episodes of PEM.

It can take time to change your habits and to stop doing something even while things are going well. But doing this is key to managing your condition in the long term.

Counselling

Counselling can help you adjust to the impact ME/CFS can have on your life. This does not mean the condition itself is psychological.

CBT

CBT can help some people with ME/CFS manage their symptoms. It can sometimes be used to help with changes in mood that can come with having a long-term condition. CBT should only be given by a healthcare professional with the right training and experience in CBT for ME/CFS.

Alternative or holistic therapies

These therapies may provide some comfort, but be cautious of any method that claims to offer a cure for ME/CFS. You should discuss any alternative or holistic therapy with your doctor before you try it. Until further research is done, no one can be certain whether someone with ME/CFS might benefit from alternative therapies.

There are a few things you can do yourself to help manage the symptoms of ME/CFS. Even small changes can make a difference to your energy and how easily you move around. Doctors call this self-management.

Keep a record of what you do each day. It helps you see which activities use up more energy and which ones you could ask others to do for you. It will also show whether your symptoms follow a pattern, and when in the day they appear.

Rest matters a great deal when you're managing ME/CFS. You may need some support and advice to work out what resting means for you, in your physical, mental and emotional activities.

Be open with the people around you, and ask for help before you reach the point of exhaustion. This is one of the most useful ways to manage myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS). Talking about how you feel matters with any long term health condition, because the symptoms affect the way you live your life.

Talk to your doctor about the emotional support available to you.

People with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) don't all have the same symptoms, so it's best not to compare one person with another. Each person's experience of ME/CFS can be very different, and so can the length of time their symptoms last.

The impact of symptoms can be:

• mild
• moderate
• severe
• very severe

Symptoms change over time, and so does the effect they have on people's lives.

Most people with ME/CFS get better over time, though some don't make a full recovery. You're also likely to have spells when your symptoms ease and spells when they get worse. Children and young people with ME/CFS are more likely to recover fully.