Overcoming Chronic Fatigue in Young People

A cognitive-behavioural self-help guide

Katharine Rimes, Trudie Chalder

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317605379
• Edition: 1
• Topic: Psychology
• Subtopic: Psychotherapy
• Index: Psychology

Overcoming Chronic Fatigue in Young People provides an effective evidence-based, step-by-step guide to managing and overcoming chronic fatigue. The highly-experienced experts Katharine Rimes and Trudie Chalder, present an accessible and practical manual aimed at young people, with downloadable material (available online) to support recovery. The book also includes a guide for parents and a helpful resources section. It is recommended for any young person struggling with chronic fatigue, as well as parents and professionals.

Currently, there is no other evidence-based self-help guide available on chronic fatigue aimed at young people. This innovative book contains detailed advice for tailoring a fatigue recovery programme to the individual and shows the health professional how to do this. Topics covered include: Sleep, exercise, coping with stress and school. Based on cognitive behaviour therapy, a treatment approach supported by research evidence, Katherine Rimes and Trudie Chalder have used this guide in specialist CFS / ME service for many years with positive results as reported by both patients and parents.

Overcoming Chronic Fatigue in Young People is aimed at young people with CFS / ME but people with chronic fatigue caused by other conditions will also find it invaluable. It is an essential resource for parents, families and health care professionals in the treatment of their clients.

1
What is chronic fatigue and chronic fatigue syndrome/ME?

All of us feel tired at times, but if you feel tired a lot of the time, you might have a condition called chronic fatigue syndrome (CFS). Some people call it ME (myalgic encephalomyelitis) or post-viral fatigue syndrome. Different people prefer different names, and for simplicity we will for the rest of this book use the term CFS/ME. CFS/ME refers to a condition where you feel very tired most of the time and have felt this way for at least three months (or six months if you are an adult). In addition to physical and mental fatigue, you may have problems concentrating, problems with your memory, or problems finding the right word. You may have other symptoms, such as muscle pain, headaches and sleep problems. Resting may not relieve the tiredness.

For a doctor to decide that you have CFS/ME, he or she will first carry out routine investigations to find the cause of your fatigue. If no medical problem is found which may be making you feel like this, and you have been checked by a paediatrician, your doctor may diagnose you with CFS/ME.

As you can see, the name describes your condition. Chronic means long term, fatigue is another word for tiredness and a syndrome is a particular group of symptoms that together form an illness. The name is neutral in that it doesn’t imply that there is a cause for the illness. This is deliberate, as a specific cause for CFS/ME has not been found. CFS/ME is a controversial condition, and some people do not believe that it is a real illness. We know that people with CFS/ME really are ill, but we believe that they can be helped.

If your symptoms are not severe enough to be classified as CFS/ME, you may still be experiencing ‘chronic fatigue’ if your fatigue has been around for several months. The ideas in this book may be useful for you even if you have not been diagnosed with CFS/ME.

This guide

You may have already received different types of advice about how to get better. This can be upsetting and confusing, on top of you already feeling unwell.

This guide is based on a self-help programme that our research has found to be helpful for young people with CFS/ME. It is based on ideas from cognitive behaviour therapy (CBT), which research has demonstrated to be an effective treatment for CFS/ME in young people. This type of intervention can help reduce fatigue, reduce the problems it can cause in different areas of life, and increase school attendance. This guide is intended mainly for young people between the ages of 10 and 18 years, but it could be useful for people older or younger than this.

Why did you get it?

Nobody really knows why people get CFS/ME. It can start after an illness, such as flu or glandular fever; after a stressful experience, such as working very hard for exams; or after a big life change, such as going to a new school.

Following are some examples of things that can contribute to the development of CFS/ME.

• Physical factors such as infections or anaemia. An initial illness is often reported as a trigger for the fatigue. However, there is no clear evidence of a virus or bacteria remaining in the body and causing the ongoing symptoms once the chronic fatigue or CFS/ME has become established.
• Stress. Stress can be caused by anything, such as worries about school or friends, a bereavement, family problems and so on. There is increasing evidence of a link between stress and the immune system not working as well as it should. (The ‘immune system’ refers to the parts of the body that work to fight off infection.)
• Having very high expectations of oneself. If you are always pushing yourself hard to achieve well or to do things ‘perfectly’, this can cause stress, frustration and fatigue.
• Very high levels of exercise. Training excessively hard can actually make the immune system work less well, making you vulnerable to infection and fatigue. Also, if you are very physically fit your body will lose its strength much more quickly when you are forced to rest (e.g. through illness) compared to someone who isn’t very fit to begin with. This means that you are more likely to notice feeling weaker or tiring more easily compared to a previous time when you had to rest.
• Busy lifestyle. Fatigue can develop in people who have a very busy lifestyle because they do not leave enough time for rest and relaxation.

Just because factors such as stress can trigger CFS/ME does not mean that the symptoms are ‘all in your mind’. Your mind and body are constantly influencing each other. The chances of developing any illness, from a common cold to a heart attack, can be influenced by stress levels, moods, attitudes and so on.

Examples of how fatigue problems can develop

Sunita

Sunita developed CFS/ME in the months before her mock GCSEs. She felt that everyone was expecting her to do really well, and she was determined not to let herself or other people down. She was under a lot of pressure and worked as hard as she could, cutting down on her usual hobbies and relaxation activities. She was pushing herself as hard as she could, but she was barely coping. The thing that pushed her over the edge was the death of her grandfather. After his death Sunita felt that she no longer had any motivation or energy left, and she became more and more fatigued. In this example there was a combination of both chronic stress and bereavement that led to CFS/ME.

Harry

Harry was always good at sports and was on his school’s teams for rugby and swimming. He loved training and did some form of sports or exercise every day. When he got a virus he rested in bed for days, which he hated, so he returned to his sports as soon as he could. But he found that he couldn’t perform as well as before. He experienced muscle and joint pain and didn’t have as much energy or strength as before. So he tried resting some more to get his strength back. But when he again returned to his sports activities the same thing happened – more muscle and joint pain and less strength. He tried pushing himself really hard to train his body to its earlier levels, but this just made him so exhausted that he had to spend several days in bed. Eventually he stopped playing any sports, but the muscle and joint pains continued and the fatigue got worse. In Harry’s case we see someone who was extremely fit and whose CFS/ME was triggered by a virus.

Your own case may be quite different from these two. Do you think that any of the factors discussed in these cases may be relevant in your situation?

The good news is that we don’t have to have a complete understanding of why your fatigue was triggered in order to help you get over it. This is partly because the factors that triggered your fatigue are not necessarily the same as those that keep it going. Those factors will be discussed in the next section.

What keeps CFS/ME going?

A number of things are likely to have been involved in the development of CFS/ME, but it’s likely that once it has been triggered different factors keep the fatigue and disability going. The following sections list some of the reasons. See if any seem true in your case.

Returning to normal activities too soon after initial infection

Sometimes people have tried to keep up with their usual levels of exercise or other activities despite being in the early stages of a serious virus that may include having a fever. Or they have returned to their previous activity levels too quickly without taking into account that they have been ill. This can make them feel worse. It is important to rest or ‘take it easy’ during an acute illness. However, resting too much may also slow down or get in the way of recovery, as will be discussed in the following section.

Resting too much

If you’ve been ill for a while, and have cut down on your activities, your body will not be used to doing much and it will be less fit in a number of ways. Your muscles will be weaker and will produce less energy because they haven’t been used as much, leaving you with less stamina. If you suddenly try to do more, your muscles will hurt. This is not because of muscle disease but because they are out of condition.

The physical effects of rest and inactivity are discussed further in the section ‘Why focus on activities?’ in chapter 3 of this book.

See-sawing or ‘boom and bust’

You may be see-sawing between doing a lot on a ‘good’ day and then feeling worse afterwards and having to rest a lot. Then you might start to feel better and push yourself too far again. This overactivity/underactivity pattern (sometimes called ‘boom and bust’) can become a cycle that’s hard to get out of. Through this process your body can end up getting weaker rather than stronger. It’s important to keep a balance between rest and activity every day.

Disrupted routines

It’s also important to stick to a similar routine every day. Not sticking to a regular routine can upset the timing of your so-called body clock, which controls rhythms in your body. This can make you feel generally unwell, with symptoms such as headaches, poor concentration and alertness, low energy and poor-quality sleep.

Being afraid of making things worse

You and your parents may understandably be afraid of making the fatigue worse. You may have been given different advice from different doctors about how to cope with fatigue. It wouldn’t be surprising if you feel confused about whether an activity may harm your body or make you worse. Perhaps when you have tried to go back to your normal activities the fatigue has gotten worse. It seems sensible to rest when you’re tired, but this only helps for a little while. Rest does not help illnesses that have lasted a long time. In fact, the more you rest the more fatigued you will feel.

Being too tough on yourself

You may have previously played a lot of sports or you were used to doing lots of activities. You might be expecting yourself to get better and return to that level of activity very quickly. During a period of rest, fit and active people lose more fitness than unfit people simply because they have more to lose. They therefore need longer than unfit people do to return to their previous fitness level. Maybe you are pushing yourself too hard and are expecting changes too quickly. During your recovery period, don’t expect to perform at your previous level. It will take time and practice to return to normal.

Research has shown that young people with CFS/ME and their parents underestimate how active they have actually been! They also underestimate how tired healthy adolescents actually get. Do what you can manage and don’t give yourself a hard time.

Sleep disturbance

Sleeping problems can also help keep the fatigue going. For example, when you are fatigued it is tempting to sleep or rest in the daytime to try to make yourself feel better. Alternatively, you may adjust your bedtime according to how fatigued you feel. Unfortunately this has the effect of disrupting your nighttime sleep and your normal body rhythms. Too much sleep can actually make you feel worse rather than better, because the sleep is often ‘light’ and not refreshing.

Conflicting advice

Many families tell us that they have been given little helpful advice, advice that is too vague and non-specific or conflicting advice from different health professionals. Unfortunately, because the CBT treatment for CFS/ME in children is new, many doctors have not heard that it can be effective and they will not always know what to advise. Some families feel that they have received little support, which has added to their stress levels.

Focusing on symptoms

When you’ve had a symptom for a l...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgements
• 1 What is chronic fatigue and chronic fatigue syndrome/ME?
• 2 Sleep management
• 3 Activity scheduling
• 4 Dealing with unhelpful thoughts and attitudes
• 5 Dealing with stress and anxiety
• 6 Dealing with other people
• 7 Back to school
• 8 Severely affected young people with CFS/ME
• 9 The future
• 10 Information for parents and other caregivers
• 11 Other problems