Chronic fatigue syndrome (CFS)

Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term condition that causes persistent fatigue (exhaustion) that doesn't go away with sleep or rest and affects everyday life. It most commonly affects the nervous and immune systems. Sometimes it is diagnosed as post viral fatigue syndrome (PVFS).

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

Who is affected?

It’s estimated that about 20,000 people in Scotland have ME-CFS, while 250,000 in the UK, and around 17 million people worldwide are affected. It affects more women than men, can affect children and adults of all ages and from all social and ethnic groups.

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 chronic fatigue syndrome can have very different experiences of the condition and how long their symptoms last. The impact of symptoms can be mild, moderate or 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.

How is chronic fatigue syndrome diagnosed?

There is no single test to detect chronic fatigue syndrome, 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:

• make a physical and mental examination to rule out other conditions
• ask about recent travel, tick/insect bites, unusual infections and drug/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 chronic fatigue syndrome should be considered for a number of routine blood tests to identify other possible illnesses. More specialised investigation may be needed if the diagnosis remains in doubt.

Some people with chronic fatigue syndrome also have another long term condition and it is important that you talk to your GP about how to manage the symptoms of the 2 conditions.

How chronic fatigue syndrome is treated

Treatment will focus on managing and reducing symptoms related to ME-CFS. This means that treatment plans need to be tailored to the individual as people experience different symptoms and these symptoms may change over time. Your GP may be able to refer you to a specialist chronic fatigue syndrome service or to services that can support you to manage individual symptoms and manage restricted activity.

The symptoms of chronic fatigue syndrome (ME-CFS) vary from person to person, and 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 but some of the common ones are listed below.

Fatigue

Severe and persistent fatigue or exhaustion most, or all of the time is one of the symptoms of ME-CFS that can help diagnosis. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave people with chronic fatigue feeling completely exhausted and can also lead to an increase in other symptoms. This is known as post-exertional malaise (PEM) or is sometimes called "payback". This is when the body isn't able to recover after using even small amounts of energy.

Other symptoms of chronic fatigue syndrome include:

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

For a fuller list of symptoms of chronic fatigue syndrome visit the Action for M.E. website.

If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia, may need to be considered. Fibromyalgia is a separate condition with its own diagnosis.

Frustration, anxiety, low mood and depression are sometimes experienced by people with chronic fatigue syndrome 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.

 Further research is needed to confirm what causes chronic fatigue syndrome. New evidence shows that there might be various factors involved and that there may be a number of different types of the illness. These different sub-groups of chronic fatigue syndrome still need more research to be identified, including how they lead to different experiences of the condition and how it develops.

Chronic fatigue syndrome 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 and stressful major life events. However in some cases there may be no identifiable trigger for chronic fatigue syndrome.

Although there is no cure for chronic fatigue syndrome there are a number of ways to help manage your symptoms.

Because of the complexity of the illness, its changing nature and the number of possible symptoms, different things work for different people. Your GP may be able to support you through managing your individual symptoms. They may be able to refer you to a specialist service or to a service that will help you to manage individual symptoms but this depends on the services available in your area.

To decide what treatment is right for you, you should look at the evidence, including published research and patient surveys, and make sure you fully understand what the treatment involve, 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

Your GP may suggest reviewing and altering the medicines you receive, considering any other conditions you may already be receiving treatment for alongside the most important ME/CFS symptoms that need to be treated.

Your GP may also need to consider the combined impact of medication for symptoms and possibly for managing other conditions, especially as sensitivity to medicine is a feature of M.E. This could mean there may be issues around polypharmacy (use of many medications) for your health professional to consider. 

Dietary advice

Your illness may make it more difficult for you to make sure that you receive the right balance of nutrients in your diet due to loss of appetite and food intolerances. Your GP may be able to advise you on how you can alter and adjust your diet.

Disability support advice

Your GP may work with you or refer you to another therapist to suggest aids, activities or support that can help you to recover or adjust so that you can live to your full potential.

Pacing advice

Balancing periods of activity and rest and noticing what activities demand most from you, can allow you to reduce the number of episodes of post-exertional malaise (PEM). Pacing yourself involves 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. It can take time to change your habits and stop doing something even while things are going well. However, doing this is key to managing your condition in the long term. A booklet on pacing is available from Action for M.E.

Graded exercise therapy (GET)

GET aims to gradually increase your ability to function and manage symptoms. It should always be carried out by a therapist who is experienced in chronic fatigue and has appropriate clinical supervision.

GET has been recommended by NICE guidelines, however these are currently under review. There’s a possibility that this could cause harm to some people with M.E. (especially severe cases) so you should make an informed decision about using this treatment.

In a study by Action for M.E, only 6% of people said GET helped to manage their symptoms, 13% said it made them worse and 38% said it worsened their symptoms.

Counselling

Counselling can support you to adjust to the impact chronic fatigue can have on your life. This does not mean that the condition itself is psychological or "made up".

Cognitive behavioural therapy (CBT)

CBT has been recommended by the NICE guidelines, however these are currently under review. Action for M.E.’s 2019 Big Survey of more than 4,000 people found that 41% said that it made no difference in managing symptoms and 13% said it worsened their symptoms.

If you decide to try CBT, it’s essential that your health professional understands the condition and how it affects you.

CBT can sometimes be used to help changes in mood that can come with having a long-term condition

Alternative and holistic therapies

Alternative or holistic therapies may provide some comfort to those with a long standing illnesses but be cautious of any method that claims to offer a cure for chronic fatigue. If the therapy has not been published in respected peer-reviewed journal or is expensive you should talk to your GP before trying it. Until further research is done, no-one can be certain whether someone with CFS/ME might benefit from alternative therapies.

Living with chronic fatigue

What can I do for myself?

There are some things that you can do for yourself to help you manage the condition and still live your own life. Small changes can build and 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 help you choose what is important to you and plan your day to achieve this. It will also show you if there are patterns of symptoms and when they appear during your day
• Rest and relaxation – this is very important for managing CFS/ME. 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 are exhausted is a key approach to managing your condition. Talking about how you are feeling is important for long term health conditions because of the impact your symptoms have on the way you live your life. While you are adjusting to the diagnosis and the change in your life, it may be helpful to get outside support such as counselling or CBT. Talk to your GP about emotional support available to you.

Where can I get support?

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

People need wider support in order to continue to manage aspects of their life. 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.

Action for M.E. has a number of booklets that may be useful for people living with CFS/ME, their families and their health professionals. They also offer resources and services for children and young people affected by chronic fatigue and their families.

Peer support

In some regions of Scotland there are local support groups providing peer support, information and advice. ALISS, Action for M.E.’s service directory and Peer Support Network and the M.E. Association can assist with signposting to these groups.