Introduction

If you, or someone you know, have recently been given a diagnosis of chronic fatigue syndrome, this short guide can help you to understand more about the condition, what the symptoms of chronic fatigue syndrome are and how it can be treated.

You may be wondering, what is chronic fatigue syndrome? Below, we explore what causes chronic fatigue syndrome, where to find further help for chronic fatigue syndrome, and ways to live well with this condition. Remember, you are not alone, and there are many sources of support available to you.

Any medical information provided here is for informational purposes and does not replace medical advice given to you by a medical professional. If you are concerned that you may have any of the symptoms discussed below, please see your GP.

What is chronic fatigue syndrome?

Chronic fatigue syndrome (CFS) is a long-term condition where those who are diagnosed experience a feeling of exhaustion which doesn’t go away with sleep or rest. This feeling is very different and much more intense than what people without the condition would describe as ‘normal’ tiredness.

People experience the condition in various ways. Most have mild or moderate CFS symptoms but some are prone to more severe symptoms which can heavily impact their daily life.

There is lots of controversy surrounding chronic fatigue syndrome and members of the medical profession do not all agree on what kind of condition it is, but the World Health Organization (WHO) classifies it as a neurological condition.

There are alternative names for chronic fatigue syndrome, including:

• Myalgic Encephalopathy (ME)
• Post-Viral Fatigue Syndrome (PVFS)
• Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

For the purposes of this article, we will use chronic fatigue syndrome or CFS, but we fully acknowledge those people who have been given a diagnosis of ‘ME’ or any of the above.

For detailed information about CFS, visit the Action for ME website
What causes chronic fatigue syndrome?

We don’t know what the causes of chronic fatigue syndrome are as yet and the condition is still being researched. Current research suggests many factors may be involved in the development of the condition, and that it may actually be more of a group of conditions with related symptoms.

Some of the possible causes of chronic fatigue syndrome are:

• Immune system problems
• Viral or bacterial infection, e.g. Epstein-Barr virus/glandular fever
• Bacteria in the gut
• Hormonal imbalance
• Psychiatric problems, such as stress and emotional trauma
• Genes
• Traumatic events, e.g. surgery or an accident

Research is continuing to try and find the causes of chronic fatigue syndrome, develop effective treatments and discover a cure one day. If you would like to understand more about current and completed research, please see the ME Research website

Did you know

“Chronic fatigue syndrome (CFS) is a long-term condition with a broad range of symptoms.”

Types of Chronic Fatigue Syndrome

Each person who is diagnosed with chronic fatigue syndrome will have a different experience of the condition, and this may be determined by what type of chronic fatigue syndrome they have.

There are three main types of chronic fatigue syndrome, which are defined by The National Institute for Health and Care Excellence (NICE) by how often and severely a person experiences symptoms and how living with chronic fatigue syndrome impacts them.

1. Mild CFS: If you have been diagnosed with mild CFS, you will most likely be able to stay mobile, undertake the usual day to day tasks, and still work or study. However, you may find your days so exhausting that your social life and leisure time is limited.

2. Moderate CFS: If you have a diagnosis of moderate CFS, you may be experiencing mobility problems and require daily living aids to help you get around. You may find some daily tasks difficult, such as housework or shopping. You may also feel unable to work, or go to school or college, and need to rest in the day for a few hours.

3. Severe CFS: If you have severe CFS, you may be experiencing significant mobility issues and may find you need to use a wheelchair, whether permanently or just some of the time. You may even feel unable to leave the house and spend most of the day in bed. You may also be extremely sensitive to light and noise.

Chronic Fatigue Syndrome Symptoms

Here we cover the variety of symptoms that may occur with chronic fatigue syndrome. If you are concerned that you may have any of these, please consult your GP.

The main symptom of chronic fatigue syndrome is persistent physical and mental exhaustion that feels overwhelming and does not go away even after sleeping or resting.

Most people will experience this symptom, but to varying degrees, and with different effects on their daily life.

There are other symptoms of chronic fatigue syndrome, as everyone experiences the condition differently, although if you’ve been given a diagnosis of chronic fatigue syndrome, it does not mean you have or will get any or all of these symptoms:

• Feeling unwell e.g. sore throat, flu-like symptoms, swollen glands
• Sleep disturbances e.g. insomnia, restless sleep
• Cognitive problems e.g. difficulty with concentration, memory and finding the right words
• Intolerance to incoming stimulus e.g. noise, bright lights, smells
• Intolerance to food, alcohol and medications
• Pain e.g. in muscles, joints, stomach, back and headaches/migraines
• Digestive problems e.g. bloating, constipation, diarrhoea and nausea
• Mental health problems e.g. depression, irritability and panic attacks
• Nervous system problems e.g. dizziness, sweating, loss of balance

It can be difficult to get a chronic fatigue syndrome diagnosis because there is no test that doctors can do to confirm it, and the symptoms are common to other conditions as well. Your clinician will try to rule out other conditions first. For more information, please see the NHS website

Products

At NRS Healthcare, we offer a huge range of equipment that can help those who are older, or have a health condition, live more independently. Below you’ll find some of our most popular products which can help relieve some of the symptoms of chronic fatigue syndrome and enable those living with the condition to do more things for themselves – whether at home or when out and about.

Living with Chronic Fatigue Syndrome

Having this condition can affect your life in lots of ways but there is treatment for chronic fatigue syndrome, and there are ways to help manage the symptoms so you can continue living independently.

Having CFS is likely to affect your daily routines but it is impossible to say how much or for how long. Some people have chronic fatigue syndrome symptoms for a short period and recover completely. Others may live with it for much longer or have periods of regression where symptoms get worse for a while.

Certain situations can exacerbate your symptoms, for example, stress, illness or having used lots of energy all in one go. You will learn what triggers your chronic fatigue syndrome and can find ways to manage this. For example, learning relaxation techniques can help if stress is one of your chronic fatigue syndrome triggers.

Impact on daily living

If you are finding it difficult to undertake daily tasks, or find it challenging to get around, NRS Healthcare can recommend products called ‘daily living aids’ to help you. We have a team of Occupational Therapists who can offer you advice as to what equipment might help you around the home or when travelling. Here are some symptoms of chronic fatigue syndrome and an example of the products which could help if you:

Find it difficult to stand up for long periods, e.g. when cooking or having a shower >> Perching Stool
Find it difficult to carry objects and meals around the home >>
Get really tired when walking or shopping >>
Spend a lot of time resting or in bed >>

If you are having significant mobility problems or finding daily activities difficult, you may benefit from an assessment from your Occupational Therapy team – speak to your GP or local social services department about this.

Treatments for chronic fatigue syndrome

We don’t understand enough about the causes of chronic fatigue syndrome yet so unfortunately there is no cure. There is no specific medicine or drug to treat CFS but medicines such as painkillers can help relieve muscle pain, joint pain and headaches.

Treatment generally focuses on reducing the symptoms of chronic fatigue syndrome by creating a healthy lifestyle and getting enough rest so that your exhaustion is managed.

Your clinician should support you in developing a regular, gentle exercise routine, taking rest (but encouraging you to avoid too much rest), eating a balanced diet and may even suggest you undertake Cognitive Behavioural Therapy (CBT). This is a talking therapy provided by a psychologist which helps people with long term conditions to cope with the stress and pain they experience on a regular basis.

CBT is often used with people who have cancer, diabetes and multiple sclerosis. It can be quite successful in helping those living with CFS by reducing worry which can have a negative impact on all aspects of life, including sleep. It can also help you think differently and find enjoyment in life. This does not mean to say that the condition is mental or ‘all in your head’, but that the mind is a powerful tool in dealing with how we think and feel. Your therapist can help you find practical ways to cope with your condition, so you can live well.

To find out more about CBT and if it is right for you, discuss it with your GP or read more on the NHS website

Exercise for chronic fatigue syndrome

People with CFS often feel that they are too tired to exercise, or that the fatigue they feel after an exercise session is so great they are unable to keep doing it. However, exercise for chronic fatigue syndrome is really important and can make a big difference to the way those living with the condition feel day to day.

You may be offered Graded Exercise Therapy (GET), which is a structured exercise programme carried out by a specialist, aiming to gradually increase how long you can carry out a physical activity. This could initially be as simple as sitting up in bed, or taking a short walk. Your trainer will advise the best plan for you, taking into account the symptoms of chronic fatigue syndrome that you experience.

Diet for chronic fatigue syndrome

A balanced and nutritious diet for chronic fatigue syndrome is important to help keep your energy up and help reduce the risk of other illnesses. Preparing meals from scratch can be difficult though when you’re feeling exhausted. You may find it better to eat little and often through the day, rather than having a couple of big meals, to help your digestion and keep energy levels up. Small, healthy snacks are also easier to prepare and eat.

Some people who experience chronic fatigue syndrome symptoms, such as an irritable bowel, may find that high fibre diets do not suit them, or may have certain foods that they are sensitive to and should avoid.

Supplements for chronic fatigue syndrome

Some people living with CFS take vitamins, minerals and herbs, believing they make them feel better and reduce their symptoms. For example:

Vitamin B12
Vitamin C
Magnesium
Folic Acid
Caffeine
Ginseng
Echinacea

There are also a number of complementary therapies that some people find help reduce their symptoms, for example:

Osteopathy
Acupuncture
Reflexology
Oxygen treatment
The Lightning Process

There is little evidence to support that these supplements for chronic fatigue syndrome work but some people feel that it is worth looking into, as conventional medicine does not offer them much in the way of treatment. We recommend discussing your options with your GP before you take any natural remedies or undertake complementary therapies.

Chronic fatigue syndrome and employment

It is possible to continue to work when you have a diagnosis of chronic fatigue syndrome.

However, some people find it difficult and may leave their current employment or find alternative work from home or part time. It depends on the severity of your symptoms and how these affect you on a daily basis.

Action for ME have produced a helpful leaflet where you can find further advice on all aspects of chronic fatigue syndrome and employment.

Support for Chronic Fatigue Syndrome

Remember – you are not alone!

We hope this article has been useful for you, whether you have chronic fatigue syndrome, or know someone that has. When living with a healthcare condition, it can help to understand what support is available to you, and below, we provide further sources of advice and information.

Help for chronic fatigue syndrome

There is a lot of chronic fatigue syndrome support nowadays. If you have CFS, talking about the condition can help.

There are many online forums and support groups where you can talk to people in a similar situation to yourself.

If you have a family member or friend diagnosed with the condition, or you’re providing care for them, it can sometimes be difficult to know how to help them and to understand what they are feeling. You can help by

Learning all you can about the condition

Talking openly about it with them
Providing practical support – for instance, helping around the home
Socialising with them in ways they can manage – for instance, watching television together or walking in the garden together

Communities

ME Association – Find a Support Group

Chronic Fatigue Support Facebook Group:

https://forum.chronicfatiguesyndrome.me.uk/

Action for ME offers a welfare advice and support service:

Tel: 0800 138 6544

Email: welfare@actionforme.org.uk

Resources

Action for M.E – provides support to those living with ME through information and community groups

Disabled Living Foundation – a national charity providing impartial advice, information and training on independent living

The Guardian – national news outlet with a section dedicated to information about Chronic Fatigue Syndrome

ME Association – organisation dedicated to helping make the UK a better place for those with ME/CFS

NICE – National Institute for Health and Care Excellence, including a guideline to helping diagnose and manage CFS

Glossary

Unsure what something means? Checkout our Glossary section below.

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of chronic fatigue syndrome as straightforward as possible.

Cognitive Behavioural Therapy (CBT)

– a psychological talking therapy used in people with long term health conditions to help manage problems and symptoms by changing thoughts, reactions and behaviours

Myalgic Encephalomyelitis (ME)

– another name for chronic fatigue syndrome

Epstein-Barr Virus (EPV)

– a virus in the herpes family that is best known as the cause of glandular fever and is considered to be a possible cause of chronic fatigue syndrome, although it has not been proven

The Lightning Process

– a three-day personal training programme developed by British osteopath Phil Parker to teach participants techniques for managing the acute stress response that the body experiences under threat

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