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Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME

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CFS/ME is a debilitating disorder which affects both physical and psychological functioning. It is also a poorly understood condition which was not widely accepted as a specific disorder until only a few years ago. Cognitive Behaviour Therapy (CBT), in conjunction with other physical and medical therapies, is now generally accepted as the treatment of choice for people who are affected by CFS/ME. This book provides the perfect companion for patients to develop and apply new insights into overcoming some of their specific symptoms as well as coping with the syndrome, both during the course of their therapy and afterwards. It provides a helpful structure and framework for understanding CFS/ME and its effects as well as practical exercises to help address some of the symptoms that patients may experience.

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13 Chapters

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CHAPTER ONE: Critical incidents, vulnerability factors and maintaining factors

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While we do not know precisely what causes CFS/ ME, for many people there seems to be certain sets of ‘critical incidents’ that coincide with the onset of their CFS/ME, as well as certain ‘vulnerability factors’ that may have increased their chances of acquiring CFS/ME. Examining what these might be for you may seem a little like shutting the stable door once the horse has bolted, but we think that figuring out what these might be is an important part of your recovery, and may affect decisions you make in the future. Before we get on to that, we will explain what we mean by critical incidents.

A critical incident is an event or series of events that were happening in your life about the time you acquired CFS/ME. Some people might have been ill with some kind of viral infection; others might have experienced some kind of trauma or stress—like bereavement, divorce, or a loss of a job. Many people may have experienced a combination different factors. For some people, it might be difficult to identify a particular ‘trigger’ for their CFS/ME. Their CFS/ME may have gradually developed over a few years, as they experienced more and more of these stressful events.A vulnerability factor refers to characteristics that may have helped to shape an individual's response to a critical incident. For example, a very driven individual who places great emphasis on achievement in a work or study setting may respond to being ill (critical incident) by continuing to work, believing that they should not take time off, because perhaps it conflicts with their work ethic, or they may perceive it as a sign of weakness. A vulnerability factor can be internal (e.g. being a highly motivated and driven individual), or external (e.g. pressure from work).

 

CHAPTER TWO: Goal setting

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So far we have discussed vulnerability factors, critical incidents and maintaining factors, and we hope that you are now familiar with these terms. One of the primary goals of this book is to provide you with strategies and tools to help you address the maintaining factors that you have identified. But, before we start this, it is useful to establish some personal goals. At the moment, if this is the first time you have read through this book, you may not have all of the strategies and tools you need to achieve the goals that you set yourself. However, we believe that it is important to set some goals first, because they may provide a context for the strategies and tools you learn in later chapters. We hope that by setting goals first, you will see that the techniques described in this book have an immediate practical application.

Energy is a precious commodity for people with CFS/ME. The setting of well-defined goals is important because it allows us to allocate our energy efficiently. If we don't know exactly what we want to achieve, we may end up aimlessly wasting our energyon activities and tasks that do not result in sufficient ‘payback’. Reaching goals gives us a sense of achievement, and may help to alleviate some of the frustration experienced with CFS/ME.

 

CHAPTER THREE: Thoughts and feelings

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One of the central ideas behind CBT is that there is a relationship between our thoughts and our emotional state. In later chapters, we will expand on this to include the relationship between our thoughts, emotional state, physiology and behaviour.

The idea is that it is not situations themselves that upset us, but instead it is how we interpret them. There tends to be more than one way of interpreting any situation, and the interpretation that we make has consequences for our emotional state.

It may seem that other ways of interpreting a situation are less true or even not true at all; this does not mean however that there are no alternative potential interpretations of a situation. We will look at why people might have a tendency to interpret a situation in a particular way in a later chapter. For now, we will try to illustrate the relationship between our thinking and our emotions.

Sometimes the thoughts that we have occur so quickly we are almost not consciously aware of them: these are known as ‘automatic thoughts’. Thoughts become automatic through

 

CHAPTER FOUR: Sleep

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People with CFS/ME frequently report poor, or disturbed, sleep. People may sleep too much or too little, have non-refreshing sleep, and wake-up during the night. A disturbed sleep pattern can make it difficult to think clearly, make you feel irritable, make it difficult to concentrate and affect your memory, as well as increasing your fatigue.

Clearly, poor quality sleep does not explain all of the symptoms of CFS/ME; however, it is likely that, for some, it can contribute to some of the fatigue and deterioration in cognitive functions, like memory and concentration.

Nobody knows for sure why we sleep; however, broadly speaking, there are two main hypotheses that attempt to answer this question. One idea is that sleep is a behaviour that has evolved because it served a purpose for our ancestors. It has been proposed that back when there were no sources of artificial light, it would have benefited our ancestors to seek out safe places to be immobile (as we are mostly when we sleep). Otherwise, running around in the dark would make us vulnerable to injury(falling down holes and the like) and to attack by predators whose night vision is superior to ours.

 

CHAPTER FIVE: Activity

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Activity encompasses all that you do, day and night: it can be washing yourself, vacuum cleaning your carpets, going to work and even resting and sleeping. Some activities are physical, such as walking or shopping, others might be considered to be more ‘cerebral’, like using a computer or talking on the phone.

You may find that you do a lot less activity now than before you acquired CFS/ME, or you may find that you do too much activity for how you are feeling. In order to manage your symptoms, it best to get as much balance in your activity as possible. Sometimes this will be impossible because there will unanticipated events and demands. However, the more balance you can get into your life, the better.

The first step in trying to obtain balance in your life is to figure out what you are doing day-to-day. As we have said before, memory in CFS/ME can be sketchy, so it is a good idea to keep an activity diary. In addition to being an aide memoire, this will give you a much clearer picture of what you are doing with your week.

 

CHAPTER SIX: Energy capsules

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It might be helpful for you to think of your activities in terms of energy capsules. An energy capsule is an activity that you can do without worsening your symptoms. Energy capsules are time-limited. It may be that you can sit and browse the internet for 20 minutes without worsening your symptoms. It may be that if you try and do the same thing for an extra 10 minutes you end up feeling much worse.

Energy capsules come in three ‘flavours’—mental, physical and restorative. Try, when you can, to take the capsules in alternative flavours. So you might take a mental energy capsule, followed by a restorative energy capsule, and then a physical energy capsule.

Rest(oration) does not mean sleeping, or even sitting on the sofa watching TV. For some people, even on a good day, watching TV can be a draining activity. Rest(oration) means relaxing, which means doing something that does not use up any of your energy, but may even replenish some of your energy stores. Some may find sitting quietly restorative, whilst others may have learnt some relaxation techniques that could count as rest.

 

CHAPTER SEVEN: Impact crosses

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We have spent some time looking at sleep and activity, and we hope that by now you are already experimenting with changes in your daily activities and trying out strategies that may help improve the quality of your sleep. Now we would like to return to a topic that we introduced in the third chapter (thoughts and feelings). Hopefully after completing your thoughts and feelings diaries, you will have seen that a relationship exists between how you think and how you feel. We want to expand on this relationship by looking at behaviour and physiology, as well as thoughts and feelings. To help understand what is going on, we will use impact crosses (sometimes called Hot Cross Buns).

An impact cross is just a visual representation or diagram to help us understand the interaction between how we think, how we feel, our behaviour and our physiology.

At this point, we would like to remind you of a bit of terminology we mentioned earlier. In the impact cross below, the term ‘cognitions’ means thoughts, and ‘physiology’ refers to what is happening physically and chemically in the body. In the example below, we can interpret the impact cross by saying that the thought ‘I will never recover from this illness’ has an emotional consequence, i.e. the individual feels hopeless and miserable. This emphasises that there is a relationship between how we think and how we feel.

 

CHAPTER EIGHT: Challenging unhelpful patterns of thinking

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After completing some impact crosses you will have seen how unhelpful patterns of thinking and behaviour can lead to negative emotions and unpleasant physiological responses. The earlier chapters dealt with suggesting new behaviours aimed at helping you manage your CFS/ME as well as reducing the severity of your symptoms. Now we are going to look at ways of changing problematic patterns of thinking.

The first step to changing negative automatic thoughts is to identify them. Hopefully, after the weeks that you have spent completing your thoughts and feelings diary, and creating impact crosses, this is a skill at which you have become proficient. We are now going to look at how to begin the process of modifying unhelpful thoughts.

At some point, our thinking becomes negatively-biased through making thinking errors. The more thinking errors we make, the more likely it is that our thinking will be unhelpful, which will have consequences on how we behave and how we feel, both emotionally and physically.

 

CHAPTER NINE: Stress and anxiety

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Stress and anxiety are common problems that nearly all of us will experience at some point of our lives. What happens to your CFS/ME symptoms when you become stressed? Do they become more intense? The symptoms of stress and anxiety can be very powerful in their own right, for people with and without CFS/ME.

Some of the symptoms of stress and anxiety:

•  Increased heart rate/palpitations

•  Trembling/hand tremor

•  Dry throat and mouth

•  Sleep diffi culties

•  Butterfl ies in stomach

•  Shortness of breath

•  Pins and needles

•  Racing thoughts

•  Diffi culties with concentration

Many studies have shown that stress can impact on your immune system in a powerful way altering normal functioning of the immune system. This is discussed in Chapter 13.

When we are in a dangerous situation, our bodies respond by readying ourselves to fight or run away from (flight) the situation. The body achieves this state by releasing hormones called adrenaline and noradrenaline. Adrenaline and noradrenaline produce all of the symptoms of stress (and anxiety). These symptoms all enhance our ability to survive dangerous situations. One example is that adrenaline enables our muscles to work more powerfully so that we can run faster or punch harder.

 

CHAPTER TEN: Core beliefs

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So far in this book we have looked at the relationship between thoughts, feelings, behaviour, and physiology. It is now time to revisit the vulnerability factors that you identified in chapter 1. We are going to look at these factors to work out whether they still have an impact on you today. In doing so, we need to look at core beliefs and rules for living.

A core belief is a particular type of thought of which we might not be consciously aware. Such thoughts govern how we view the world, and therefore can affect our cognitions, feelings, behaviours and physiology. One of the fundamental ideas behind this concept is that we interpret and perceive the world around us based in part on what we already know.

We acquire our core beliefs through our experiences in life. For example, imagine that you are on a platform at a station as a train arrives. The train casts a larger and larger image on the retina at the back of your eyes as it moves towards the platform. If the only source of information by which we make sense of our experiences was received through our senses (e.g. throughour eyes), how would you know whether the train was getting closer, or whether the train was growing larger? Our experiences have taught us that trains stay the same size, and from this we can deduce that if the train is not getting larger, it must be getting closer. This illustrates one of our common core beliefs, that of size consistency.

 

CHAPTER ELEVEN: Symptom mapping

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Some people with CFS/ME may be highly-motivated and ‘driven’ with characteristics that may verge on what might be called ‘perfectionism’. Often, people with CFS/ME have pushed their bodies very hard at some point in their lives prior to acquiring the condition. For example, some individuals may have contracted a virus and been ill but continued to work long hours. This may not be true for all people with CFS/ME, but what seems to be quite common is that, at some point in their lives, people have stopped listening to, or have misunderstood, what their body was trying to tell them.

In this book, the terms setbacks and relapses mean the same thing. They refer to a sudden major increase the intensity of your symptoms. The next chapter deals with this aspect to the management of your CFS/ME in more detail.

Once individuals acquire CFS/ME, it seems they try hard to listen to what their body is telling them, however it appears that the misunderstanding of what their body is saying persists. Some symptoms are signs that the body is recovering. For example, if you experience aches and pains after exercise but these symptoms do not lead to a setback, then these symptoms might mean that you are getting fitter. If you experience brain-fog after a poor night's sleep or after concentrating for a long time when you have not done so for a while, and these symptoms do not lead to a setback, then these symptoms could be considered a ‘natural response’: i.e. most people who have slept poorly and are not used to concentrating for a long period of time will experience confusion or feel muddled.

 

CHAPTER TWELVE: Planning for setbacks

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Setbacks are a normal part of any recovery. After working through this book and implementing the strategies and tools within, you may find that things are going well for a while, and then, all of a sudden, you experience an intensification of your symptoms. This is not your body telling you to throw away this book. Nor does it mean that you have taken one step forward and several steps back. By working through this book, we hope that you have learnt some useful techniques that will have benefited you. If you do experience a setback, it is to these strategies and tools that we advise you to turn.

In fact, we would suggest that you make a plan for setbacks and relapses before they happen. It is much more difficult to work out how to deal with a setback when you are experiencing one, than when you are feeling well. Having a solid setback plan can help you shorten the duration of the flare-up of your symptoms. Remember, by working your way through this book you have furnished yourself with strategies and tools and, hopefully, you have developed a greater understanding of your CFS/ME. You are in a better position now to deal with any setback than you were before you picked up this book.The very first thing to remember if and when you experience a setback is not to panic. It is likely that you have noticed yourself the effect of anxiety and stress on your symptoms. Anxiety and stress-provoking thoughts like ‘I will never get better’ or ‘I am right back to square one’ need to be challenged, and now you can take the iTEST to help you do this.

 

CHAPTER THIRTEEN: Medical perspective

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Advances in technology have touched many areas of our lives, from microwave ovens to mobile phones and the field of medicine is no exception. Consequently our theoretical understanding of fatigue has been enhanced. The exact process by which fatigue occurs however, and the way in which genetic and environmental factors might influence such a process, has yet to be emphatically elucidated. This remains the aim of ongoing research which will hopefully bring closer the definitive approach to prevention, treatment and cure of chronic and debilitating fatigue.

The preceding chapters have outlined the cognitive behavioural approach to dealing with fatigue and the other symptoms that occur with it in CFS/ME. In the early chapters we broached the commonly expressed concern about the use of CBT as a treatment for CFS/ME. In this chapter our intention is to consider the theoretical possibilities and the existing scientific and medical evidence for whether fatigue has a physical cause or a psychological cause, or both, and so illustrate how and why CBT may be helpful in addressing the chronicity of fatigue, whatever the cause.

 

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