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

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

Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems.

People with ME/CFS experience severe pain and fatigue associated with post-exertional malaise (PEM). This is when the body is not able to recover after using even small amounts of energy. This fatigue feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or emotional exertion.

ME/CFS affects more women than men, can affect children and adults of all ages and from all social and ethnic groups. It doesn’t go away with sleep or rest and affects everyday life. It can sometimes be diagnosed as post viral fatigue syndrome (PVFS).

Symptoms of ME/CFS

The symptoms of the condition vary from person to person. There may be times when your symptoms improve and you’ll be able to do some normal everyday activities. At other times, symptoms may get worse, affecting your daily life.

If you experience new symptoms, talk to your GP or specialist as the new symptoms may be unrelated to ME/CFS. Women often find that symptoms worsen at different times in their menstrual cycle. Not everyone will experience all of the symptoms.

Post-exertional malaise

People with ME/CFS experience severe pain, fatigue and a range of other symptoms associated with PEM. This is the body and brain’s inability to recover after using even small amounts of energy.

Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms.

Other symptoms of ME/CFS include:

• feeling generally unwell
• pain
• broken sleep
• problems with concentration, thinking and memory (‘brain fog’)
• speech and language problems, including word-finding difficulties
• poor temperature control
• dizziness
• being very sensitive to light and sound
• nausea
• loss of appetite
• muscle pain (myalgia)

Read more about the symptoms of ME/CFS

Frustration, anxiety, low mood and depression are sometimes experienced by people with ME/CFS because of the impact of the condition and its symptoms on their lives. This does not mean that ME/CFS is a mental health condition.

Causes of ME/CFS

Further research is needed to confirm what causes ME/CFS. There might be various factors involved and there may be a number of different types of the illness. These different sub-groups still need more research to be identified, including how they lead to different experiences of the condition and how it develops.

ME/CFS may appear suddenly or more slowly over time. It may follow an infection, typically, but not always, viral.

Other possible triggers can be:

• trauma
• surgery
• stressful major life events

In some cases, there may be no identifiable trigger.

How is ME/CFS diagnosed?

There’s no single test to detect ME/CFS. A diagnosis is made after other possible known causes for symptoms have been excluded.

The earlier 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 so that they can take this to their GP or specialist.

Your GP 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 current medication
• arrange tests

They may be able to make a diagnosis after 3 or 4 months of seeing a pattern of symptoms. Anyone suspected of having ME/CFS should be considered for routine blood tests to identify other possible illnesses. More investigation may be needed if the diagnosis remains in doubt.

Some people with ME/CFS also have another long-term condition and it’s important that you talk to your GP about how to manage the symptoms of the 2 conditions.

Treating ME/CFS

Although there’s no cure for ME/CFS, there are ways to help manage your symptoms.

Because of the complexity of the illness different things work for different people. Your GP may be able to support you through 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 the treatment involves before you make a decision. You have the right to decline any treatment option you do not feel comfortable with.

Your GP may suggest some of the following treatment options.

Management of medicines

Dietary advice

Disability support advice

Pacing advice

Counselling

Cognitive behavioural therapy (CBT)

Alternative and holistic therapies

Living with ME/CFS

There are some things that you can do for yourself to help you manage the condition. Small changes make a difference to your energy and mobility. This is called self-management.

To help with this, you might try:

Planning your time

Record what you do so that you can build a picture of what uses more energy and what activities you can ask others to do for you. This will show you if there are patterns of symptoms and when they appear during your day.

Rest and relaxation

This is very important for managing ME/CFS. You may need some support and advice on what that might mean for you in terms of your physical, mental and emotional activities for resting.

Getting support

Being open with people and asking for help when you need it before you’re exhausted is a key approach to managing your condition. Talking about how you’re feeling is important for long term health conditions because of the impact your symptoms have on the way you live your life. Talk to your GP about emotional support available to you.

How will ME/CFS affect my quality of life?

Not everyone will experience the same symptoms so it’s important not to compare people with ME/CFS. People with ME/CFS can have very different experiences of the condition and how long their symptoms last.

The impact of symptoms can be:

• mild
• moderate
• severe
• very severe

As symptoms change over time so does the impact they have on people’s lives.

How long will it last?

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

Where can I get support?

ME/CFS can have a significant emotional and financial impact on your life. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.

Information on entitlements to welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E. They also offer resources and services for children and young people affected by ME/CFS and their families.

Peer support

In some regions of Scotland there are local support groups providing peer support, information and advice. ALISS and Action for ME can assist with signposting to these groups.