PATIENT INFORMATION

Understanding CFS/ME

Answers to your questions

Plus an overview of self-management techniques

A manual for patients and carers

Torbay and South Devon CFS/ME Service Team base: 4th Floor, Union House, Union Street, Torquay TQ1 3YA

Tel: 01803 219859 Email: swdevoncfsme.sdhc@nhs.net

Working with you, for you

© 2019 The information in this leaflet is the copyright of Torbay and South Devon NHS Foundation Trust and should only be used by users of our service. Re-use includes copying, and translating into other languages for your own personal use. It also covers non-commercial research and study. Re-use is subject to the following conditions. You must;

Acknowledge the source and our copyright in cases where you supply

the information to others

Reproduce the information accurately

Not use the information in a misleading way

Not use the information for the principal purpose of advertising or

promoting a particular product or service

Torbay and South Devon NHS Foundation Trust. Torbay and South Devon CFS/ME Service. Revised by Kirsty Northcott and Katherine Woolnough 2018 With thanks and recognition to Leeds and West Yorkshire CFS/ME Service

Contents Reading this manual with mental fatigue PART I What is CFS/ME?

Causes and disease mechanisms

Predisposing factors

Triggers

Maintaining factors

Symptoms and the spectrum of illness

Functional Impact of CFS/ME PART II Overview of self-management techniques 1. Changing your daily lifestyle and managing activities

2. Motivation to make changes

3. Mind – body links

- Introduction to stress - Introduction to cognitive-behavioural therapy (CBT) - Memory and concentration

4. The importance of sleep

5. Rest and relaxation 6. Diet and CFS/ME 7. Exercise and CFS/ME

8. Offering support to a person with CFS/ME

9. Dealing with others

10. References/recommended reading

Reading this manual with mental fatigue

It is common for people with CFS/ME to have problems with mental fatigue. The

problems reported are; reading for long periods, poor concentration, unable to

remember things. Consider when reading this manual;

How much you can read before your fatigue level starts to increase.

Stop reading when you have read the number of pages you can read without

increasing your mental fatigue. Mark the point you have reached.

Put the booklet down at this point and do something else or rest for a while.

PART I Overview of self-management techniques

What is CFS/ME? CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis)

The term CFS/ME encompasses a relatively common clinical disorder or spectrum of disorders that can lead to substantial ill health and disability in people of all ages. (Disorder, meaning a ‘disturbance’ or ‘imbalance’ in normal function.) CFS/ME is a ‘label’ or ‘umbrella term’ given to a specific collection of symptoms, often occurring at a time or over a period of time when ‘stressors’ are impacting on the physical or mental balance of an individual. ‘Stressors’ can impact from internal events or external events to the human body, causing different types and levels of trauma. Clinically it is recognised as a fluctuating disorder of energy control (fatigue) along with other symptoms, indicating imbalance. Symptoms commonly include, fatigue, pain, prolonged recovery from any activity, muscle pain, sleep disturbances, disturbances of memory and concentration, irritable bowel, abnormal temperature control, emotional and mood fluctuations. It is estimated that there are around 150,000 people in the UK today suffering from ME and related chronic fatigue syndromes. This may have increased since it’s recognition in 2002.

Causes and disease mechanisms The causes (aetiology) and disease mechanisms (pathogenesis) are unclear and varied, although research is increasingly providing important theories, notably on factors that predispose, precipitate, or perpetuate the condition. It is felt unlikely that there is one cause or one mechanism to be measured, more that this condition has complex and varied aetiologies with many mechanisms in play. Although the disorder is clinically recognisable, by the common core symptoms, CFS/ME assumes many different forms and is highly variable in levels of severity and duration, but lacks specific disease markers, in other words there is not one test or one mechanism that is measurable.

Research has demonstrated immune, endocrine, musculoskeletal, and neurological abnormalities. To what extent these abnormalities are part of the primary disease process or secondary consequences remains the subject of debate.

Several overarching possibilities, which are not mutually exclusive, have been proposed to explain the occurrence of CFS/ME, including

CFS/ME is an umbrella term for several different illnesses

One or more ‘core’ disorders exist

Several different causative factors trigger a common disease process

The aetiology and/or pathophysiology are multi-factorial

Certain factors are necessary but not sufficient to cause CFS/ME

Certain factors can influence individual manifestations or duration

Some features are secondary consequences of the primary disease process

There is good-quality evidence that some factors trigger CFS/ME, while others maintain it, although evidence of predisposing factors is limited.

Predisposing factors Gender – Incidence in females exceeds that in males of any age, however this may correlate with men being less likely to attend surgery or be diagnosed accurately. Familial – The familial incidence of CFS/ME is slightly higher than expected, which suggests that familial factors may play a part in susceptibility. Twin studies suggest a hereditary component but family life events and environmental factors also may have an influence. How we live our life affects our tendency towards certain illnesses. Personality – There is evidence both for and against the possibility that certain personality traits might predispose people to develop CFS/ME. It is more likely that social and cultural influences play a part in the journey towards illness. Or that illness beliefs and responses impact on its duration and intensity. Other disorders – Some patients have a past or current history of other disorders, particularly fibromyalgia and irritable bowel syndrome. The association of other disorders with CFS/ME could reflect different manifestations of a similar process or different expressions of a common predisposition. Alternatively, other disorders could in some way predispose a person to CFS/ME. Previous mood disorder – Most, but not all, studies have found a history of mood disorders in individuals with CFS/ME. This finding might simply reflect the fact that previous mood disorders predict future mood disorders, which often co-exist with chronic illnesses, including CFS/ME. Alternatively, this finding could reflect a common predisposition to both mood disorders and CFS/ME.

Triggers Infections – Good-quality evidence indicates that certain infections are more common triggers for CFS/ME than others. Glandular fever, viral meningitis, and viral hepatitis are followed by CFS/ME in about 10% of cases of the primary infection. CFS/ME can occur following infections with herpes viruses, entero viruses, hepatitis viruses, and some other viruses, and also non-viral infections such as Q fever. CFS/ME has been reported after salmonellosis, toxoplasmosis, and brucellosis. Influenza and ‘flu-like infections can trigger CFS/ME, but common upper respiratory tract infections do not seem to. Available evidence suggests that abnormal persistence of infectious agents does not occur in CFS/ME, although certain chronic infections can cause similar symptoms. Immunisations – A few case reports have suggested that CFS/ME has occurred after immunisations, though inter-current events, including infection, might have played a part in the disease process. It is biologically plausible that some processes seen after infections could also occur after immunisations, but this has yet to be confirmed by a good quality cohort study in the case of CFS/ME. Current advice to avoid immunisations during infections is designed to avoid such triggering. Life events – The evidence that life events can trigger CFS/ME is weak. Severe life events are much more likely to provoke a mood disorder, which can be misdiagnosed as CFS/ME.

However, clinical and patient experience suggests that increased “stress” may be common around the onset of symptoms or a triggering event, such as infection.

It is unclear whether this is as a triggering, a predisposing or a maintaining factor. Stress is also recognised as a strong trigger for flare ups and setbacks. Physical injuries – These may be more likely to trigger the seemingly related condition of fibromyalgia than CFS/ME, though instances of CFS/ME after physical or operative trauma have been described. Environmental toxins – Reports have suggested an association between exposure to environmental toxins, such as organophosphorus compounds, and development of disease in isolated cases. The balance of evidence indicates that this is not a common or widespread trigger.

Maintaining factors Factors which maintain and prevent improvement or recovery. Sleep disturbance – The majority of patients with CFS/ME experience sleep difficulties, which are generally independent of mood disorders, but can contribute to cognitive dysfunction. Poor sleep quality will also exacerbate fatigue and other symptoms. Mood disorders – Disorders of mood, especially depressive and anxiety disorders, occur in a minority of CFS/ME sufferers. They are important to identify or exclude because they can either mimic or coexist with CFS/ME. Mood disorders can exacerbate, modify, or contribute symptoms, and can affect adaptation and recovery. However, mood disorders can also be misdiagnosed in patients with CFS/ME because of the overlap of key symptoms. Inactivity – A decrease in activity is an obvious consequence of CFS/ME. If prolonged, inactivity may then become a problem in its own right, with consequent loss of physical fitness, problems with balance and temperature control, autonomic dysfunction, loss of confidence, and sleep disturbance.

Although clinical wisdom and some research suggest that the degree of physical de-conditioning is likely to be linked with severity of disease, this finding is not universal and other, as yet undetermined, factors must also predict the extent of impairment. Pervasive inactivity can predict non-response to certain treatments. Over activity – Activity beyond the level that an individual can usually tolerate will prompt a delayed worsening of symptoms. Observation suggests that patients who show cycles of over activity followed by setbacks (‘boom and bust’) may have a more protracted course. Inter-current stressors – Clinical experience suggests that emotional and physical stressors, “stress” including inter-current infections, vaccinations, and surgical operations can cause setbacks in some CFS/ME patients. Iatrogenic illness – As with all conditions, clinical management strategies can sometimes contribute to maintenance of the disease. These could include inappropriate advice (to exercise too much, or to rest too much), misdiagnosis (e.g. diagnosing a psychiatric disorder when one is not present, or missing such a disorder or other diseases because of misattribution of symptoms to CFS/ME), and inappropriate prescribing.

Failure to acknowledge the patient’s illness or to provide supportive care can cause additional distress and alienation, and might encourage the patient to seek unconventional/untested remedies, some of which may cause harm. Illness beliefs – The way in which abnormal illness behaviour and illness attributions (especially about cause) may be perpetuating ill health and disability in some CFS/ME patients remains a contentious issue. It is thought that certain strongly held beliefs about the cause of the illness can impede progress.

These include the view that the illness is entirely physical or it is caused by a persistent virus. These beliefs could be partially correct – e.g. a virus could have provoked a persistent or prolonged change in physical functioning. However, they could also act as obstacles to recovery or to necessary treatment. It seems important that patients and professionals keep open minds since knowledge continues to grow. Positive attitudes and cooperation based on mutual respect seem likely to produce best outcomes.

Symptoms and the spectrum of illness There is currently no clear scientific evidence to allow formal differentiation of ME from CFS on the basis of pathophysiology or response to treatment. We hold the view that every patient’s experience is unique and his or her illness must be treated flexibly in its own right, from a range of options that are generically applicable to the disorder but individually adapted. Symptoms Patients with CFS/ME experience an individual array of symptoms from the overall range seen in the illness. Some, such as physical and/or cognitive fatigue are seen in almost all patients, though their extent can vary. Others are very common, such as pain, disturbed sleep, and gastrointestinal disturbance. In addition to symptoms that occur in the majority, individual symptom complexes may vary according to the individual’s medical history and activity pattern. The symptoms shown opposite are those reported by patients on a regular basis to the South and West Devon CFS/ME Service.

Definitions of severity levels * Mild – Are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits, and often take days off. *Moderate – Have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education and need rest periods. Their sleep at night is generally poor quality and disturbed. *Severe – Are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing and cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often Housebound or bedbound, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

* Ref. Report of Working Group to CMO (2002)

* Ref. Nice Guidelines (August 2007)

Symptoms

Fatigue

Alcohol intolerance

Anger

Bloating

Confusion

Diarrhoea/constipation

Disappointment

Dizziness

Eyesight problems

Feeling drunk/ more clumsy

Food intolerances

Frustration

Guilt

Headaches/ migraine

Heaviness

Irritability

Light intolerance

Loud noises in head/ Tinnitus

Low mood/ Depression

Memory problems

Muddled words

Muscles twitching, spasms, jerking

Muscle pain

Muscle weakness

Noise intolerance

Numbness

Pins and needles

Poor temperature control

Problems with digestion

Sleep problems

Sore throat

Stomach problems

Swollen glands

Vivid dreams

Word finding difficulties

As in other chronic conditions,

a new symptom can raise new

questions about the reliability

of the diagnosis, or concern

that a quite different pathology

could be missed if the

symptom is immediately

attributed to CFS/ME.

If you are concerned about a

new symptom or change in

symptoms, please consult your

GP.

Functional Impact of CFS/ME

Effect on life (reported by patients on the group programme)

Changes in weight

Changes in sexuality

Coping with variability and uncertainty

Fear of crowded places

Feeling more selfish

Feeling misunderstood

Have to prioritise

Increase in symptoms

Loss of confidence

Not finishing/starting tasks

Push self more

Reduced/ changed activities

Reduced safety

Reduced motivation

Reduced social contact

Reliance on others

Sense of achievements reduced

Value health more

Due to increased fatigue levels and other symptoms it would be expected that mobility would be limited and difficult. It is inevitable that, with a reduction in mobility, balance is reduced as well as confidence. With this condition, one of the diagnostic criteria is that following activity there is a ‘backlash’ of reduced energy accompanied by an increase in symptoms and a need for rest.

Having to cope with the condition, often results in a loss of confidence and an increase in stress and anxiety. Fatigue affects the function of the brain, and this can result in poor concentration and more difficulty coping with an over-stimulating environment (e.g. noise, light, busy environments) Sleep problems are common in CFS/ME. These include problems such as difficulty going to sleep, waking during the night and early morning, and sleeping during the day. Muscle functioning is usually affected. When energy is low and fatigue levels high this impacts on muscle function, circulation, causing difficulty with walking and transferring, e.g. moving on and off furniture. This can cause musculoskeletal pain, stiffness, restlessness and/or discomfort. Reduced energy levels cause people to find ways of adapting activities which they have to continue to perform, but often limits or stops many other more pleasurable or work type activities. As a result, people with CFS/ME find that their work, leisure and home life has become very restricted and often out of balance. Many people have had to cease or change their work, hobbies, socialising and exercise. The experience of a chronic condition such as CFS/ME commonly affects mood. This is often in the form of anxiety, irritability, anger or low mood/depression. There is also often a reduction in self-confidence. In any health difficulty the emotional and physical support of family/friends/health professionals is essential to help the person adjust and adapt to a new lifestyle and the management of their condition. Being isolated from access to these would be detrimental to their health and well-being.

PART II Overview of self-management techniques

1. Activity management and Lifestyle changes

Introduction This manual is designed to give you an overview of current NHS recommended techniques to guide you in the self-management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). It is important to explore the balance of all the activities you currently engage in and identify areas for change. In developing a greater self-awareness of current patterns of activity and possible perpetuating factors which may hinder the recovery process, it is hoped that you will be able to gain a greater sense of control over your condition. We hope this manual will also be useful to carers supporting patients with CFS/ME. The aim is to increase carers’ understanding of the condition and provide guidance in how to support someone with CFS/ME in a beneficial way.

Why is activity management important in relation to fatigue? When asked ‘what did you do today’ most of us will respond with ‘oh this and that’ or ‘pottered around’ or ‘can’t really remember’. If we look at saving energy or using it effectively we must first be able to recall what we are doing. Within the real world getting the balance right is very difficult as there are lots aspects of life that we can’t predict or feel we can’t control. With CFS/ME the aim is to manage the core aspects of daily life to allow extra energy for those unplanned events.

The most common symptom of CFS/ME is a limited supply of energy insufficient to serve the body’s needs. Levels of fatigue can fluctuate and can be worsened by increasing physical, mental and emotional activity. Every task we undertake from getting out of bed each morning to undressing for bed at night requires energy. It is a simple question of supply and demand. If our energy supply is low or disrupted and activity levels are high, the body cannot meet the demands of our life. In CFS/ME the severe drop in energy capacity means that even minimal activity can lead to prolonged periods of fatigue. Activity management is not necessarily about increasing or decreasing activity. It is about doing things differently or replacing activities of relatively high energy expenditure with those of less demand.

The ‘human battery’ People with CFS/ME often report not being able to recover fully after sleeping or resting and describe this as having a flat battery. Of course, the human body does not actually have a battery. Many of the body’s systems have a role to play in creating energy. Our respiratory and circulatory system transport oxygen, the digestive system releases energy from food, hormones can regulate our energy supplies and the nervous system instructs the body parts to function and utilise energy.

R

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S

T

A

C

T

I

V

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T

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Many health problems that affect individual parts of the body can also cause problems with fatigue. These are like specific faults in the battery, but if corrected, the energy supply is returned. For example, if someone is diabetic, they may feel more fatigued when this is not controlled but with the appropriate treatment the fatigue improves. But with CFS/ME there is no specific fault or change in the body’s systems but the overall way in which the battery operates seems to be impaired. All the body’s systems seem to be affected, producing a wide range of symptoms, in addition to the primary problem of fatigue.

Using up energy People with CFS/ME often describe having fluctuating levels of energy. Even on the ‘good’ days, energy levels are significantly lower than before having the condition. Despite having low energy levels, there may be a tendency to do as much as you can, while the energy is there, and push past your limits. People can often feel very guilty when they think they are not doing ’anything’, especially if their partner is working.

This tendency to overdo things can often result in a flattening of the battery. Then there is no choice but to rest or stop activity completely. This is known as the ’boom and bust’ pattern of activity. Symptoms may begin to increase but they are ignored and pushed through. Alternatively some people try to avoid flattening the battery by staying within very small activity levels. This helps to avoid the dead battery situation but means they can feel stuck at this level and may be worried about doing more for fear of exacerbating symptoms Energy

Rationing energy Learning to ration energy and use it to best effect can be very helpful. The intention is to avoid flattening the battery and allow opportunities to build energy levels over time. This is done by using smaller amounts of energy at any one time and spreading the total energy used over longer periods.

This may mean prioritising the most important tasks or finding alternative ways to do things. By managing energy and leaving a small supply in your battery, the body has some reserves for digesting food, fighting infection and helping the recovery process.

Generating energy It is important to explore how to generate energy as well as thinking about how we spend our energy. We will look at the activity itself and the periods between activity. People often believe that sitting or lying down is rest and it is important to understand the difference between not physically moving and actually relaxing. Relaxation strategies can be used to improve the quality of ‘rest’ which will help the production of energy. People often say that when they are sitting down resting, their minds are still very active, thinking about the things they should be doing. By learning how to relax both mind and body, you can help recharge your battery.

Jump starting the battery The body has an emergency energy system that can be used in a crisis or when we need to really push ourselves to do something important to us. In these situations we can activate our body’s emergency response system to produce short-term supplies of ‘energy’. Some people describe this as ‘running on adrenaline’. This may help us to get through the situation but will increase fatigue levels afterwards as the body tries to recover. For example, if there was a fire in your house you would have a sudden boost of energy to help you to escape, but would suffer for this later. Sometimes using this additional boost can be helpful, as it may enable you to do something you really want to do and so feel better in yourself, despite needing to increase your rest afterwards. But if you were doing this all the time it wouldn’t help your recovery. This is like eating some chocolate cake when you’re dieting. You can get away with it sometimes but not all of the time!

How am I spending my energy? Before starting to change our daily patterns of activity we first need to understand more about the things that we do each day. Usually in life we do things without thinking about them first. Our everyday life becomes automatic. However, with chronic fatigue, it’s best to think before you do. This can be very difficult when we are so used to just getting on with life. Most of us do not realise the number of complicated processes and factors which all have to work together to enable us to do even a simple task, such as writing a letter. Although it is not necessary to be able to understand all the changes that occur in your body to allow it to move and function, it is important to have an awareness of the variety of factors that can influence your ability to perform a given task. People who have CFS often say they have ‘done nothing all day’ because they are comparing themselves to their previous lifestyles, and don’t think about the way small, everyday jobs can affect their fatigue. They may also be unable to identify anything in their routine that has led to an increase in fatigue levels because they are focusing on physical activities and forgetting that energy is needed for all types of activity, including emotional, mental and social tasks. Therefore, the first step is to become more aware of our everyday life and energy that is needed for all the things we do.

Why is doing things not as easy as it seems? When fit and healthy, doing everyday tasks is automatic. Most people with CFS can often feel frustrated at not being able to complete or even start seemingly simple activities, such as washing hair or doing the washing up.

It is only when you lose your energy that you really start to appreciate how demanding of energy everyday activities can be. If you stop to think about how many different things are involved in doing an activity you begin to realise how complicated daily life really is.

To complete an activity, such as making a cup of tea, lots of different processes have to work together.

When it comes to performing an activity, therefore, it is important to be aware of the role of some of the systems within your body. Biomechanical This refers to how our bodies move. The brain sends signals through the nerves to the muscles, which move the joints. In order to make one movement such as lifting a kettle, a complex pattern of muscle movements has to occur. Some muscles tense while others relax. The brain receives feedback through the senses and central nervous system to inform the brain and allow it to send messages back, making adjustments to the movement.

Physiological The body needs to adjust its internal systems in response to our activity. Our heart rate may increase, the amount of oxygen in our blood may change, we may release endorphins, or other chemical responses may happen.

Sensory The brain gets a constant stream of information about what is happening both inside and outside of the body through our senses. Our senses of vision, hearing, touch, smell and taste help us to adjust our actions and keep us safe. For example, making sure we are pouring the hot water into the cup and not in danger of scalding ourselves. We have internal sensors which are able to identify pain or pressure and alert the brain to any danger or change. Other internal sensors help us to know where we are in relation to space and gravity, such as proprioception and balance.

Cognitive processing The brain interprets the information it receives, uses our memory, perception and decision-making centres to co-ordinate movement and determines our actions. The brain needs to sequence a series of different actions in order to complete the task, based on what it has learnt from the past.

Emotional Our emotional state can affect our performance of an activity. If we are upset or anxious we might shake and spill our drink, or may not want to do the activity at all. In addition to our internal processes, there are also external factors, which can affect how we do a task.

Muscles

Nervous System

Motivation

Senses

Memory

Concentration

Perceptual skills

Cardiovascular response

Social The context in which the activity occurs can change how we perform the activity. For example, it may be easier to make a cup of tea for yourself than in front of a group of people at a meeting.

Environmental

Where we do the activity can also make a difference. Is the environment too hot or cold? Do we have to stand or sit down? Is there enough light to see or is it too bright?

In addition, there are other factors influencing your individual relationship to that activity, for example: History – your past experience and skill in the activity Self Esteem – your thoughts and expectations of yourself in relation to the activity Reward and Purpose – the activity’s meaning and purpose for you Roles and relationships – how the activity defines the person you are and how

you relate to others Financial – the financial consequences of the activity

Spiritual – how the activity itself or the way we carry it out relates to your belief

system

Cultural – the meaning of the activity within your social group. All of these aspects are involved in what you do and how you do it. Difficulties with an activity could relate to one or many of these factors. As we start to look at patterns of activity and using energy more effectively, remember it can take time to find the right solutions when doing even simple things can be so complicated!

Making activity work for you

Once you start to understand all the different things in your everyday life that require energy, you can start to think about how you could make changes, using available energy in the most effective way. The way you did an activity in the past may have worked then but does it work for now? Could you do some tasks differently to reduce the amount of energy used, for example sitting to perform a task rather than standing, or getting other people involved? No two individuals are the same! This seems like an obvious statement but it is amazing how many of us compare ourselves to others or to our past achievements, and then question why we fall short. You may be feeling at the moment that you can’t do anything, because you are comparing yourself to your past self. But the starting point for improvement is to look at the here and now. If you do not have a clear picture of what is happening now, how do you know what to change, and how will you know if you have changed it?

The microscope approach Most people with CFS/ME find their fatigue levels will fluctuate. At times, you may feel that you have a little more energy so try to achieve more while you can, but this can lead to increased fatigue and longer periods of rest. This is the typical ‘Boom and Bust’ pattern associated with CFS (illustrated by the red line in the diagram over the page). The ‘Boom and Bust’ pattern can occur in a day, a week, a month or even a 6 month cycle. Constant pushing through fatigue and ignoring symptoms will overload your system until it can no longer provide you with the energy needed to sustain this lifestyle. Try to find a level of activity you can manage that does not cause excessive levels of fatigue. Your fatigue level will still fluctuate (as illustrated by the green line) but by trying avoiding over-activity or excessive rest it stays in a more stable range. However, each person is different, so finding a manageable balance of activity and rest is a difficult process and it takes time to find what suits you.

Energy fluctuation in a boom and bust pattern

Energy fluctuation at baseline

Setting maximum and minimum activity levels

Many people do not know where to start to find a sustainable lifestyle. Some people try to do what they can manage on a good day, every day, which doesn’t work. Others may follow what they feel their body is telling them to do, which can help stabilise symptoms but they don’t seem to be making progress. In order to find a starting point, it helps to gain an understanding of what you are currently doing. The activity diary in the workbook may help you focus on this.

Demand Supply

The helicopter view – seeing the bigger picture Supply and demand Another analogy that can be used to understand the importance of grading and balancing activities is the concept of balancing scales. On one side of the scales is energy supply, which is now much smaller than it was in the past, and on the other side are all the demands on that energy.

Improving supply A helpful way to think about your energy supply is what we call the ‘Jug of Life’. Inside your jug is your energy, which due to CFS/ME is now at a much lower level than before. Every day you give different amounts of your energy to all the things that your body and mind have to do. Some things will be particularly draining of your energy supply such as fighting an infection or dealing with stress.

But there are other things in life that give energy. The first things we tend to think of are food and sleep, but enjoyable and fun activities can also give us energy. If we feel we have really achieved something or feel proud about something this can give us energy, there are some activities that use some of our energy supply, but we also get some energy back from them.

People with CFS/ME often focus on the things they feel they have to do, such as housework or sorting the bills. These are activities which may not provide any enjoyment or satisfaction, so put nothing back into the jug.

Whereas activities which may be seen as a waste of energy, such as following interests or spending time with friends, are the first to be sacrificed. However, these activities may be the things that help top up our energy supply.

The jug of life

Should’s

Have to’s

Food

Sleep

Fun

Achievement

Relaxation

Stress

Paperwork

Have to’s

Reducing demands Demands on our energy can be positive and negative and come from lots of different sources, such as family, work, running a house, etc. They can also come from the pressure of trying to meet our own expectations or standards. It can therefore be helpful to identify whether any of these things could be done differently. Could anyone help with these demands, or do they need to be done at all? Sometimes we have demands that we can do nothing to change. If it really is the case that these areas of life can’t be managed differently, then you might identify that your fatigue isn’t going to change until something else on the balance changes, such as your financial situation or support from others.

2. Change management Any behaviour is the result of the interaction between what we believe and how we feel. If we want to change behaviour it is necessary to change the underlying beliefs and feelings related to that behaviour. We are all creatures of habit and purposeful behaviour change is both difficult to achieve and even more difficult to maintain. There are many factors that influence whether we achieve behaviour change: intention to change is just one. Other significant factors that influence behaviour change include: the beliefs underlying the behaviour; the value of it; the perceived costs and benefits of changing; the barriers to changing; beliefs about our ability to perform the behaviour change and lastly, the support and reinforcement of others. Stages of change When making a change in our behaviour we go through stages of change:

1. Precontemplation: see no problem and no intention of change 2. Contemplation: aware of problem, thinking of changing but no plans to

change 3. Preparation: intention, plans and perhaps take initial steps, but unstable

4. Action: actively engaged in change but vulnerable to relapse

5. Maintenance: have learned the skills and using them regularly to maintain

healthy behaviour pattern

Your Journey

Each of our journeys is unique, depending on which stage we are at.

What helps us to make changes? There are a number of factors that can increase motivation and make it more likely that we will be successful in changing our behaviour. Self-efficacy – your belief that you can make the change and maintain it. It is important to show yourself you can do something. Set goals as small increments, each of which are realistic and attainable. It is also useful to observe others who have been successful. Self-monitoring: Become more aware of your behaviour pattern, define specifically what you want to change and start with a clear baseline for later comparison. Self and social reinforcement: Reinforce the behaviour by rewarding yourself for success or let others know of your intentions so that they can support you.

Finding a way

Travelling

Staying on track

Beginning the journey

Finding out about self-management techniques, deciding how to use them

Trying new skills

and adapting to a

change in lifestyle Feeling the Benefit of changes and growing confident

Thinking, and planning a way forward

3. Mind-body links Health problems not only affect our physical health but also impact on our emotional well-being, as well as our family and friends’ lives. When we experience pain or fatigue during a task, this can lead to feelings of frustration, anger or worry. However, something that we don’t always take account of is that the opposite can also happen. How we think and feel can affect us physically. Think about a situation where you were nervous about something - perhaps going to the dentist, sitting an exam, or waiting for some important news. Chances are you had ‘butterflies’ in your stomach, were sweating a little more than usual or wanted to go to the toilet. You can probably think of other ways your body responds when you’re a little worried or nervous about something. Here are some examples of how our emotions can affect us physically;

Anger can lead to muscle tension and pain.

Guilt can lead to a feeling of nausea.

Depression can lead to feeling lethargic. It is important to recognise that being ill can have an emotional impact and that these emotions can affect us physically and contribute to the chronic illness.

Introduction to stress We all have to deal with stress of different levels every day. Life can become even more stressful for people with CFS/ME. A health problem impacts on major aspects of life such as work and family. Even seemingly minor tasks can become more stressful. A vicious cycle can develop as the physical impact of stress makes the symptoms of fatigue worse.

What is stress? Demand versus supply One way to understand stress is to think about a balancing scale with supply on one side and demand on the other. We feel well when we have enough energy supply to balance all the demands of life. However, when the demand is greater than the supply the balance is disturbed and we experience stress.

It is also important to incorporate our thoughts and feelings into this idea. Evidence shows that the important factor is how we perceive the demands. We often make demands on ourselves that are perhaps not necessary, for example by comparing what we do now with what we used to do or think we should do rather than need to do.

Understanding the physical and physiological response to demand Stress causes a strong physical response in our bodies known as autonomic arousal. This is the automatic physical response of the body to a perceived threatening or stressful situation.

To understand more about how our bodies produce energy in response to demand or threat we need to go back to the time our bodies evolved. In the caveman’s world, life was geared to survival. The key to survival was to be able to hunt food, build shelter and fight off predators, all of which require energy. But resources, such as food, were scarce so it was not necessary to produce high levels of energy all of the time, only at the times needed. The body evolved systems for varying the amount of energy produced in response to circumstances. Initially, when the brain identifies a threat, this triggers a response in our central nervous system and the release of certain hormones. These activate the required changes in the body. Heart and lung activity is increased to raise levels of oxygen in the body. The body also targets where it wants the increase in energy to go. The caveman needed to hunt, fight or run away, all of which require the large muscle groups in the body to work, like the arms and legs. Therefore, blood flow to the muscles increases and the internal tension in each muscle cell (which is shaped like a coil) is increased to hold that energy ready to be released. Blood is diverted away from the body systems not needed for fight or flight, such as the digestive and reproductive system.

These systems are put on standby. Quick decisions are needed so there is more blood flow to the brain and the electrical activity in the brain is speeded up. There is an increase in uptake of sensory information to allow a greater awareness of the situation and environment. In this way, the caveman improved his performance and was more likely to survive in a fight. When the threat had passed he could then go back to his cave and relax and the response could switch into its opposite mode. This system works very effectively and still helps us in threatening or particularly demanding situations producing the extra energy we need. However, the world has changed so much that most demands now are not things we need to physically fight or run away from. Health concerns, work, money and family demands are more constant and don’t require a short term physical reaction.

But the system works the same as it has always done. So let’s think about what happens if it is switched on but not switched off again. Increased heart rate; Racing pulse, palpitations, pounding or tightness in the chest. These sensations can be very frightening resulting in more anxiety. Increased breathing rate; leading to hyperventilation. This can reduce the amount of carbon dioxide in the blood causing tightening of the blood vessels and reduced blood supply. This leads to a large number of symptoms such as light-headedness, dizziness, feeling faint, feeling unsteady, blurred vision, pins and needles, tingling or numbness, clumsiness, cramp, increased sensitivity to noise and light and a feeling of unreality. The increased breathing can lead to chest pain or discomfort as well as headaches or neck pain. It can also cause unpleasant sensations in the throat such as dry mouth, swallowing difficulties or feeling of a lump in the throat.

Muscle tension; leading to pain, weakness, trembling and twitching. Digestive system problems; such as indigestion, bloating, constipation, diarrhoea, nausea. Imbalance in hormone levels; may cause lack of libido, mood changes such as irritability. Increased speed of thoughts; can disrupt concentration and memory. Sensitivity to; noise, light, etc. due to increased sensory levels. Increased nerve activity causes the pupils to dilate to let in more light. Increased sweating; can cause clamminess. Increased adrenaline; can make it difficult to get to sleep, cause frequent waking, increased nightmares and sweats. Increased blood pressure palpitations, feeling hot, heart racing Overall changes in temperature control; problems with sleep and fatigue. Symptoms of stress can overlap with the symptoms of CFS/ME. This highlights the importance of understanding stress and trying to reduce stress as it may be contributing to some of the symptoms.

Introduction to cognitive-behavioural therapy (CBT) The difficulties of dealing with the effects of CFS/ME on a daily basis can have a significant emotional impact. These emotions can sometimes appear to come out of the blue and feel uncontrollable. We often believe that emotions are a result of events that happen to us or situations we find ourselves in. However, research has shown that it is not the situation but our interpretation of that situation that is important in how we cope with it. Emotions are often triggered by thoughts. If your thoughts are unhelpful you are likely to feel sad or anxious. If your thoughts are more helpful and realistic, you are likely to feel more happy and content.

If we think of an example - a friend doesn't call when they said they would. Think of the different interpretations you might have of this event.

If you think, 'I must have upset them', you will be likely to feel anxious and upset.

If you think 'They must have been distracted', you may feel irritated, but you are likely to feel less miserable and worried.

If you think 'no one ever phones me', you may feel quite depressed.

If you think ‘oh well, I am sure they will ring at a later date’ you may feel content.

In these examples, the situation remains the same but the emotion will change depending on the intermediary thought. Our thoughts stem from underlying fundamental beliefs. These have their roots in the past and can be traced back to early experiences. Sometimes some of these fundamental beliefs are unrealistic, unhelpful or out of date with our current situation.

For example, we each have our ideas and expectations about the way things are or should be, but these rigid rules can be unrealistic and unobtainable. By pursuing an unobtainable goal we are condemning ourselves to failure and all the feelings that failing to meet our own expectations can bring. These ideas are the basis of cognitive-behavioural therapy (CBT). CBT aims to help people to manage distressing emotions and change unhelpful behaviour by changing thoughts and re-conceptualising situations. It is not about just thinking positively, but developing more realistic thinking. How is this relevant to chronic health problems? We tend to attribute meanings to all the twinges, aches, pains and other bodily sensations that we have, based on past experience and attitudes. Take, for example, someone who wakes up with a sharp pain in the chest. One person may think this is indigestion, having eaten a heavy meal before bedtime. He may feel irritated at being woken up by the discomfort and feel annoyed with himself for having eaten too much. He may the take an indigestion tablet. Another person may react differently. This person may have a heart problem or be prone to anxiety and may think he is having a heart attack. Perhaps he would feel alarmed and ring for an ambulance. An awareness of this mind-body links particularly important in CFS/ME where there are many different symptoms which may come and go. A common symptom in CFS/ME is dizziness. You might have been in a situation where you have been out shopping, say, and suddenly felt very dizzy. What kind of thoughts might go through your mind? Here are some possible examples:

"I hope I’m not going to faint, it’ll be really embarrassing." "I always feel dizzy. It's no good, I can't do anything without feeling ill"

"I feel dizzy again. It's annoying but if I sit down and rest I'll feel better in a while"

The way you think about symptoms can make a difference to how you feel, how your body reacts and how you behave. It is very easy to get locked into unhelpful patterns of behaviour.

The more anxious you are the more ‘stressed’ you become and this makes you more likely to make mistakes, which means you then have more to notice and more to worry about. This creates a vicious cycle.

Memory and concentration

People with CFS/ME very commonly report difficulties with memory and concentration and these can be some of the most distressing symptoms.

Understanding memory There are two types of memory - short term and long term. Short-term memory, sometimes referred to as ‘active’ memory, is that part of memory which stores a limited amount of information for a limited amount of time (roughly 15-45 seconds). The most striking fact about short-term memory is it has very limited capacity; usually 5-9 items. We can get around these limitations by ‘chunking’ information, for example, remembering an 11 digit number (01803 389749) as 3 chunks of information “01803” “389” “749”. We can also extend the storage time in short-term memory by rehearsing information in our minds. Eventually, however, this information will either be lost or will be transferred to long-term memory, in which a seemingly unlimited amount of information is stored indefinitely. A number of processes have to take place before information enters our memory store. To encode information into short-term memory you must first attend to it. People with CFS/ME commonly report forgetting information. However, this is usually because the information has not been retained in the first place. Many problems labelled ‘memory problems’ in CFS/ME are really lapses in attention.

People with CFS/ME also report difficulties retrieving longer-term information. This is not due to a loss of the information, but most likely due to fluctuations in fatigue levels, anxiety, other symptoms and the distracting world around you.

The memories are stored inside your brain and you have not forgotten them but the problem is bringing them to the surface for use when you need them.

Why does this happen in CFS/ME? There are a number of reasons these difficulties are commonly reported in CFS/ME:

Fatigue - When you are fatigued it is easy to be susceptible to information-overload, either from internal symptoms and worries or from hypersensitivity to surrounding stimuli. Focusing on that one important thing can sometimes become impossible. We have to screen out all the background noise in order to attend to what we want to, which takes a lot of brain power and, therefore, energy.

Poor sleep - Research has shown that healthy individuals who are sleep-deprived show inefficiencies in attention and short-term memory. Stress - Stress leads to heightened arousal and can lead to a difficulty in focusing on specific stimuli in the environment. Physical symptoms - Your symptoms are likely to distract you, making it difficult to attend to other external information. For example, it is very difficult to concentrate on a conversation when you are in pain. Thoughts - It is also easy to be distracted by your own thoughts. For example, during a conversation, having the thought “I can’t remember this person’s name” or “I know I’m going to forget this” is distracting as well as anxiety-provoking! Worry about memory - If you are worried about your memory then it is also likely you will be hyper-vigilant for memory difficulties. It is actually very common to have slips of the tongue, forget people’s names or phone numbers. However, if you become worried about this symptom you are much more likely to notice it.

4. The importance of sleep - Why do we need sleep?

Sleep helps the body restore and rejuvenate in many different ways including:

Memory, learning and social processes: the parts of the brain that control emotions, decision-making and social interactions slow down dramatically during sleep, allowing optimal performance when awake. Sleep enables the brain to encode new information and store it properly, facilitating learning.

Nervous system: neurons used during the day repair themselves during sleep. When we experience sleep deprivation, neurons become unable to perform effectively and the nervous system is impaired. Mood can be affected by lack of sleep.

Growth and development: growth hormones are released during sleep, essential for proper physical and mental development. The effects (positive and negative) of sleep for babies and children are magnified. Children need much more sleep than adults. Tired children are often cranky, fussy and become easily frustrated and difficult.

What are the stages of sleep?

According to electroencephalogram (EEG) recordings of human sleep, there are five well defined stages: Stage 1 (drowsy sleep) we drift in and out of sleep for about 5 to 10 minutes

and can be awakened easily. Our eyes move very slowly and muscle activity slows. The mind can be totally free and open to creative and new ideas. We are still conscious of our surroundings, effectively dreaming while still awake.

Stage 2 (light sleep) our eye movements stop and our brain waves (fluctuations of electrical activity that can be measured by electrodes) become slower, with occasional bursts of rapid waves called sleep spindles. Our heart rate slows and body temperature decreases.

Stages 3 and 4 (deep sleep/slow-wave) Slow brain waves called delta

waves begin to appear; there is no eye movement or muscle activity. People awakened during deep sleep do not adjust immediately and often feel groggy and disoriented for several minutes after they wake up. Some children experience bedwetting, night terrors, or sleepwalking during these stages.

REM sleep (dream/paradoxical sleep) During REM (rapid eye movement) sleep, our breathing becomes more rapid, irregular, and shallow, our eyes jerk rapidly in various directions, our limb muscles become temporarily paralyzed so that we do not injure ourselves, our heart rate increases, our blood pressure rises, and males develop erections. The dreams we have in this phase of sleep are often quite bizarre and have little or no obvious relation to our day to day lives.

The body cycles through the different sleep stages, throughout the night from stage 1 to REM and then begins again with stage 1. The average length of time for a complete sleep cycle is 90-110 minutes.

About 50% of sleep time is spent in stage 2 and about 20% in REM sleep. The remaining 30% is split among the other stages. On average, a person will cycle through the stages 4 or 5 times in an eight hour period. After a person falls asleep, the first REM sleep period generally happens 70-90 minutes later. The first cycles of the night will tend to have shorter REM periods and longer periods of deep sleep. This trend reverses as the night goes on. The later cycles have longer REM periods and shorter deep sleep periods. By morning, most sleepers spend almost all of their time in stages 1, 2 and REM sleep with very little or no deep sleep (stages 3 and 4). Children spend approximately 50% of their sleep time in REM sleep. The time we spend in each phase of sleep varies depending on what we have been doing during the previous day. Someone who has had a physically stressful day will spend more time in non-REM sleep. Our body automatically adjusts so that we get the type of sleep we need. If the balance between REM and deep, slow-wave sleep is disrupted, for example by illness, it can affect cognitive functions such as memory.

Improving your sleep Establishing a routine can help your body clock get used to certain things happening at set times. A regular sleep wake cycle will help to regulate your body rhythms. You may find that your sleep will improve once you increase your activity level slightly.

Try to get up at the same time each day, even if you have not had much sleep the previous night. Use an alarm clock if you need to.

Try not to sleep for long periods during the day, even if you feel very tired: If you are currently doing this, try to gradually reduce the amount of daytime sleep. A ‘cat nap’ for 30-40 minutes may be helpful in terms of relaxation and recovery. Try not to go to bed early, even if you feel tired, or to make up for lost sleep. It may be useful to set a time before which you will not go to bed.

5. Rest and Relaxation

Rest is an essential part of activity management. When we are resting effectively there is minimal brain and body activity enabling the body to recharge. It is important to get the right amount of rest for you. Too much and you will start to become deconditioned and lethargic. Too much rest during the day may have an impact on night time sleep and upset your natural patterns of waking and sleeping hours. Too little rest can result in an increase in symptoms and a perpetuation of the boom and bust pattern of activity. If you think of all the activity you have to do in a day as a bridge (see diagram), several pillars of rest are needed to support that bridge. If you push on through, ignoring your symptoms, you may be forced to take a longer period of rest but this may not be effective in terms of supporting your ‘bridge of activity’.

Regular pillars of rest Large pillar of rest supporting bridge of activity ineffective in

supporting bridge of activity

Effective rest is a challenge. People with CFS/ME can find it hard to relax. It can be difficult to turn down the sensory overload. It can also be difficult to relax if you are constantly thinking about what you feel you should be doing. Relaxation techniques may be helpful in learning to rest effectively.

Relaxation Relaxation is a skill we can learn. Our bodies can become used to high levels of tension, but we can re-programme them with relaxation until we have a new more relaxed way of being. Relaxation is therefore different from resting or doing something we enjoy and it requires practice as any other skill. Mindfulness: This is an approach using meditation to raise awareness of our experience by paying special attention to it. It is not the same as relaxation, where the aim is to relax. The aim is to help cultivate an acceptance of how things are and observing one’s reactions in a way that is non-judgemental and compassionate. You can find out more about this approach from the book ‘Full Catastrophe Living’ on the book list at the back of the manual. Or simply ‘Google’ it or look it up on You Tube.

6. Diet and CFS/ME

When you are ill, it is important to eat a balanced, nutritious diet to give your body the best chance of recovery. People who are experiencing CFS/ME symptoms often say this can be difficult because they don't have the energy to prepare meals, or have reduced appetites. This can result in an unbalanced diet leading to more tiredness. There are a number of dietary issues relevant to people with CFS/ME. Irritable bowel syndrome and food intolerances can be symptoms. Components of a healthy diet Each person is unique so it is not possible to advocate eating or avoiding particular foodstuffs. Some people may be prone to certain food intolerances, which become more apparent when experiencing CFS/ME. If you are concerned that you have particular food intolerances, you may wish to discuss this with your GP as it may be possible to be referred to a dietician. An inappropriate diet can exacerbate the symptoms of CFS/ME so it is advisable to ask a professional for help with diet changes. In our experience people find it preferable to stick to a healthy, well-balanced diet. Some people choose to investigate alternative diets, and if they find a diet which suits them and their fatigue problems, it is reasonable for them to continue with it. However, it is always important to bear in mind that dietary intake needs to provide balance and fulfil nutritional needs.

Proteins are essential for the growth, repair and maintenance of every living cell. Protein rich foods include pulses, meat, fish, peas, nuts and eggs. Carbohydrates are essential for output of energy. There are two main types of carbohydrates: simple carbohydrates, such as sugars; and complex carbohydrates, such as pasta, bread and potatoes. Foods high in sugar include chocolate bars and sugary drinks. Sugar is a type of carbohydrate that releases energy quickly. Sugary drinks and snacks need not be excluded. If you like them, try to eat or drink them with a meal in order to allow a more gradual release of energy, rather than the immediate ‘sugar rush' experienced when eating them on their own. But remember, they do give a more unnatural burst of energy followed by a slump, which may not be helpful. Foods that contain complex carbohydrates or starches release energy more slowly. It is useful to have a regular input of complex carbohydrates throughout the day to try to prevent dips in your energy supply. Inadequate intake of carbohydrates can lead to the body breaking down muscle to provide the energy it requires, which is not desirable. Fats There are a variety of foods containing fats – vegetable oils, meat, nuts, cheese etc. Fats are important for maintaining body heat and protecting vital organs. They also provide a degree of energy and enable absorption of the fat-soluble vitamins. Vitamins/minerals are essential to life, growth and health. Vitamins are best absorbed through food as they interact with other vitamins and minerals, for example, calcium and vitamin D. Those who have particularly low function and spend lengthy periods in bed will be at longer term risk of osteoporosis. The most important aspect of prevention of osteoporosis is to work on improving your tolerance of weight-bearing activity such as standing and walking. However, it is also sensible to maintain a good intake of calcium rich foods such as dairy products or dairy replacements such as soya milk. Fibre is needed to provide bulk for the intestine so that it can process food effectively. Foods high in fibre include fruit and vegetables, breakfast cereals and baked beans. Water The human body is around 70% water and needs to remain hydrated. This involves drinking up to 2 litres of fluid per day, but be careful as some drinks, such as coffee and alcohol, are diuretics. They make you pass urine more frequently and therefore lose more fluid.

Things to avoid:

Avoid anything that contains caffeine, such as coffee, tea, cola, pro-plus tablets and ‘energy’ drinks. These are all likely to make you feel worse and may ultimately drain you of energy.

Some people find they are unable to drink alcohol as it may exacerbate their symptoms or have a more powerful and unpleasant effect on them. If you do want to drink alcohol, in moderation, experiment with different types as people report that they react differently to different drinks.

Food intolerances Many patients suspect food intolerances and self-restrict their diet. Some people find that their symptoms are helped by restriction of milk, wheat, yeast, caffeine, alcohol and others. However, it is not clear why intolerances occur. They are difficult to diagnose and there are no scientifically proven tests. The only reliable way to diagnose food intolerance is to exclude it from the diet and then reintroduce it and monitor your symptoms. However, exclusion should only be done under the guidance of a Registered Dietician. If you cut out a food group this can lead to nutritional deficiencies

Dietary supplements

Nutrients are best obtained from food rather than supplements or tablets. Remember that if your diet is deficient in one area, supplements may not be effectively absorbed, as vitamins often work in combination with other vitamins or food. There have been various recommendations and some published studies advocating particular dietary supplements.

To date, there has not been any supplement that has consistently been shown in studies to help symptoms significantly. Moreover, there are certain vitamins (such as A and D) which can be harmful if taken in excess. Note: pregnant women should not take vitamin A supplements at all. There are other supplements which are excreted by the kidneys if taken in excess, which are not harmful to the body, but may be to your purse!

If you choose to take supplements:

Follow recommendations on the packet

Consult a Dietician or Pharmacist if in doubt.

You could include essential fatty acid supplement such as - Evening primrose oil (up to 1000mg/day) - Fish oils (1000mg/day) such as Omega 3 or Omega 6 - Do not take fatty acid supplement containing vitamins A, D and E if already taking a multivitamin.

Seek advice if planning a pregnancy.

Conservation of energy around food preparation

Consider your movements around the kitchen and the way you have things laid out. How can you make it easier for yourself? Try to avoid undertaking exhausting complex tasks all at once.

Think creatively about ways in which you can break down the task into manageable chunks that can be spread out over time. Include rest periods in your planning and try to find a pace which suits you. Make it easier!

Be aware of when you eat People with CFS/ME often benefit from eating small amounts on a regular basis, for example, dividing up larger meals into smaller amounts and eating every two hours. This ensures that your body is getting a consistent supply of energy throughout the day, and is not having to digest large meals.

Ensure you have a short period (around 20 minutes) of rest or low-grade activity after eating to aid digestion. In addition, try not to eat for two hours or so before going to bed. Eating just before going to bed can disturb your sleep patterns thus leading to lowered energy levels.

Changes in weight

A healthy diet involves taking in enough calories to balance the amount of energy burned. Insufficient intake will lead to reduced energy levels and weight loss. If you have gained weight following CFS/ME this may be due to factors other than diet, such as decreased activity levels or changes in the body's physiological response. Weight gain can result from:

Less activity Eating for energy boost Craving for sweet foods or drinks , particularly when tired Medication

If you have lost weight: Eat regular meals ‘little and often’. Avoid using low fat or reduced sugar foods Enrich foods with milk, cream, cheese, margarine, mayonnaise, etc. Use fortified full cream milk (4 tbsp milk powder into 1 pint of full cream milk) Drink nourishing fluids

Irritable Bowel Syndrome Eat regular meals, avoiding erratic eating patterns Make sure mealtimes are as relaxed as possible Drink plenty of water Follow a balanced diet as described above Seek help from your GP or a Registered Dietician

7. Exercise and CFS/ME Exercise can be treated like any other activity and be graded accordingly. Exercise is an emotive word and can conjure up a variety of images in people's minds, from a gentle stroll to vigorously ‘pumping iron’ at the gym. Daily activity of any description, from getting dressed and preparing meals to DIY and gardening can be considered exercise for your muscles and cardiovascular system. If you feel you are ready to return to additional sport or exercise on top of daily activity, then gentle exercise initially with a graded approach is recommended. After a period prolonged bed rest or reduced activity, a person with CFS/ME may find difficulty starting any gentle exercise again. The effects of prolonged rest on the body are known as de-conditioning. For example, a runner who is used to running 10 miles a day, suffers from a hamstring injury and is forced to rest during recovery. She does not return to 10 miles a day straight away. If she did manage to complete the 10 miles she would suffer breathlessness and a racing heart, and the next day would have sore and aching muscles. A similar thing happens to a person with CFS/ME following a long period of bed rest or inactivity, even if they are just walking around the house. It can also take longer to recover from such de-conditioning than it would take for an unfit runner to return to his previous performance level. The problems of too little or too much activity and exercise What problems can avoiding activity and exercise lead to?

De-conditioning of heart, lungs and muscles.

Lack of muscle use leads to muscle weakness and loss of muscle bulk.

Lying flat for too long causes poor blood pressure control when getting up, causing symptoms such as dizziness.

Initial attempts to exercise results in feelings of weakness, unsteadiness and aching of the exercised muscles.

These difficulties have psychological consequences and can lead to negative thoughts and fears about becoming permanently disabled.

Adapted from Dr Anne Macintyre, 1998

On the other hand, too much exercise/activity can be followed by a relapse.

A balance between rest and activity is needed

The trick with this balancing act is to know your own limitations at any given time, i.e. the difference between therapeutic activity/exercise and overdoing it. Unfortunately no one can tell you if an exercise or activity is going to be too much for your present levels of energy. The only thing to do is try something. If it causes excessive symptoms then rest until recovered and then try again, doing a little less. Learn to recognize your warning signs and your current limitations. Bear in mind that your energy level and your ability to carry out activities will fluctuate, as this is the nature of CFS/ME. Once you have found a level of activity that you are able to maintain over a period of time, that you feel well and have excess energy to use up at the end of each day, you can very gradually begin to increase your level of activity. An example Try a gentle walking programme beginning with a minute or two each day. If this is manageable with no ill effects, slowly increase the time, maybe to 5 minutes and then 7 minutes. This is only an example. Select an activity that is meaningful to you and begin at a level that is suitable to your current stage.

Rest Activity

8. Offering support to a person with CFS/ME The most important characteristics of a person offering support include: a caring and supportive attitude, the ability to be non-judgmental and a willingness to encourage the person with CFS/ME to deal with limitations with patience and persistence. The following guidelines are intended for people who may live or work with people with CFS/ME. It’s best to allow the person with CFS/ME, rather than the supporting person, to define the goals that are meaningful for them and identify the best way to achieve them. Allow the person to tell you exactly what they would like to try or change without coercing them to do more than they can manage. Be familiar with their early warning signs of flare-ups or setbacks. Encourage the person with CFS/ME to say when they are noticing that their energy levels are dropping. Don't be afraid to ask them from time to time how they are doing. When they reach the point where they're wondering whether they might be increasing their symptoms, it's time to stop, pull back and continue only after the symptoms have subsided to a manageable level. Create, with the person with CFS/ME, a list of coping statements and/or brief relaxation procedures which can be helpful. Don't allow that person’s distress to rattle you, but don't fail to take it seriously. Help them as much as you are able but accept that, in the end, it is they who will be most effective in helping themselves. Be reliable. Don't push a person with CFS/ME but do encourage them and help them to acknowledge their achievements. If the person seems stalled or unmotivated, ask them what is getting in the way of proceeding. Assist, if you can, in exploring and identifying the reasons for their difficulty in managing or accepting their limitations. Try to see things from their perspective. Things which seem insignificant to you - such as walking down a street or eating in a restaurant - may involve a great deal of effort and courage for the person to achieve, even for a short period of time.

These accomplishments and the efforts leading to them should be recognized. Accept that the person’s condition fluctuates and there will be better days and worse days. Remind them that backsliding or setbacks are part of the normal course of learning to cope with CFS/ME. In spite of your desire to help, people also need to take responsibility for their own recovery. Be supportive and encouraging but avoid trying to do it all for them. This will only undermine their confidence and research has shown that, over time, too much help can increase dependency and disability. Know your own limits. Forgive yourself if you offer less than perfect support. If your capacity to be supportive has been stretched to the limit, take a break.

9. Dealing with others What is effective communication? Effective communication means getting across what you really mean and having another person really understand it. This sounds simple but can be very complex. Effective communication is a learned set of skills that enables you to get a message across, to express how you feel, to receive feedback and to listen without judging. Communicating your own needs We often assume that people understand our intentions but are often unclear about these. There can be a mismatch between what we express and what we really mean or intend to say. For example:

What we mean to

say is:

What we actually say is: Consequences

I don’t feel well

enough to go out

tonight

Oh, I don’t know, what do

you think?

This might be quite confusing

to the other person who has to

guess how you feel

I don’t want to go because I

haven’t got anything to

wear

The other person doesn’t

understand how you feel

You don’t understand me This is quite an aggressive

response and may leave the

other person feel hurt and

confused

We might not say anything

but try to express how we

feel non-verbally

The other person may not

notice or may misinterpret.

These examples indicate that in order to be clear about your intentions it is important to try and say what you mean. Trying to convey your message in a round-about way often leads to confusion or misinterpretation, leaving you frustrated and distressed. Try to be sensitive to your own style of communicating. Take note of how you say things. Are you saying what you really mean? Are you saying it clearly and simply? Do you give other messages with your tone of voice, your facial expression or your body as you talk and listen? There are a number of reasons why it is so difficult to say what we mean. These include:

self-defeating thoughts, e.g. “I have no right to say this” or “he should know how I feel”

concern about others’ reactions

not knowing what we want

previous distressing experiences of trying to communicate Assertiveness Assertiveness is a set of techniques, skills and practised behaviours based on an increased awareness of ourselves and others that allow us to achieve more of what we want and need from the world we live in. Assertiveness is the ability to put across our point of view in a non-aggressive way showing respect to others and ourselves. It involves:

Asking for what you want (or saying no) in simple fashion without attacking or manipulating others.

Communicating needs and feelings honestly and directly while maintaining respect and consideration for others.

Standing up for yourself and your rights without apologising or feeling guilty. The benefits of assertive behaviour are:

Others feel comfortable because they know where they stand.

They respect you for your honesty and forthrightness.

There are reduced feelings of anger and resentment.

You gain confidence in being able to form more honest and understanding relationships with others.

To respond assertively, you need to:

stay calm when you feel angry

try and relax

breathe gently

avoid shouting

think positively

actively listen to the other person

help others to speak

reflect what others have said, e.g. you feel…because…

be empathic: try to see things from others’ perspective

withhold judgement

Less helpful ways of communicating There are ways in which we communicate that tend to be unhelpful: Submissive Yielding to someone else’s preferences while discounting your own rights and

needs. Not expressing your feelings or letting others know what you want. Feeling guilty or as if you are imposing when you do ask for what you want.

Effects: Others often remain ignorant of your feelings and needs. Others will tend to discount your right to express your needs. You may be afraid that openly expressing your needs will alienate a spouse or partner on whom you feel dependent. Aggressive Communicating in demanding, abrasive, hostile way. Being insensitive to others’ rights and feelings. Attempting to gain what we want through coercion or intimidation. Effects: Makes enemies and creates conflict because succeeds by sheer force. Puts others on the defensive, leading them to withdraw or fight back rather than

co-operate. Passive-aggressive Express angry-aggressive feelings in undercover way through passive resistance,

i.e. if angry with boss - be constantly late for work or forget about certain jobs; sulking.

Complain or moan about what is lacking rather than asking for something to be done.

Effects: Very rarely get what you want because you rarely get it across. Leaves others angry, confused and resentful. Manipulative Attempt to get what want by making other people feel sorry for or guilty towards

them. Play role of victim or martyr in effort to get others to take care of them rather than

take responsibility for meeting own needs. May become openly angry or pretend to be indifferent if you don’t achieve results.

Effects: Person being manipulated may feel confused, angry and resentful towards manipulator. Dealing with comments from others People with CFS/ME often talk about the how difficult it is to deal with comments from others. Firstly, think whether these comments are open to misinterpretation. For example, what goes through your mind when someone says “when are you going back to work?” Do you automatically think “I should be working” or “They think I’m lazy”? Could an alternative perspective be that they are showing a positive interest in you and attempting to be empathic?

Sometimes it is not other people’s comments that are upsetting but it is the fact that they trigger negative thoughts and beliefs about ourselves. It may be useful to try and think in advance of good responses to difficult comments.

Comments from

others

What do I think

they mean?

What else could

they mean?

What is a good

assertive response?

“When are you going

back to work?”

“You ought to be

working”

“You should be

better by now”

They are

interested in my

recovery and

wonder how I’m

doing

I’m not well enough at the

moment, but hopefully

soon.

My symptoms fluctuate

too much to allow me to

work at the moment.

“You look well”

“You’re faking it” They are pleased

that I look well.

Thank you

Others may be confused by the way that CFS/ME fluctuates from day to day. They may need help in understanding that this affects how much you can do from day to day, and that you may need more help on some days than others. Communicating this to them can be helpful. Communicating with Healthcare Professionals Interactions with healthcare professionals can sometimes be both confusing and frustrating. Part of this is because it is often hard to express your intentions clearly. Often when we visit a healthcare professional, we want the following:

Information

Analysis

Advice

Understanding

Reassurance. Think about your last consultation with a healthcare professional. What were you asking for? Did you express this in what you actually said? Before you have an appointment, take time to write down some notes. What do you hope to get out of the appointment? How will you express this? If you have planned the main points you want to get across you are more likely to be able to prioritise and make sure you have time to discuss them.

10. References/Recommended Reading

Fighting Fatigue. A practical guide to managing the symptoms of CFS/ME. Sue Pemberton and Catherine Berry. 2009. Hammersmith press London. UK. ISBN 978-1-905140-28-2

Coping with Chronic Fatigue. Chalder, T. (1995) London: Sheldon Press.

Overcoming Chronic Fatigue. M. Burgess. T.Chalder. (2005). London: Constable and Robinson Ltd.

CFS/ME Working Group Report to the Chief Medical Officer. January 2002. Department of Health

http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

About ME. Action for ME website http://www.actionforme.org.uk/

Managing your Pain before it Manages You. Caudill, M (2002). New York: The Guildford Press.

The Anxiety and Phobia Workbook. Bourne, E.J. (1995). Oakland,CA: New Harbinger Publications.

How to Master Anxiety. Joe Griffin and Ivan Tyrrell. (2007) HG Publishing

Boundless Energy. The Complete Mind-body Programme for Overcoming Chronic Fatigue. Chopra, D. (2001). UK: Rider Press.

Mind over Mood. Changing how you feel by changing how you think. Greenberger, D & Padesky, C. (1995).

New York: The Guildford Press.

Full Catastrophe Living. How to cope with Stress, Pain and Illness using mindfulness meditation. Kabat-Zinn, J. (2001) London: Judy Piatkus Ltd.

NICE Guidelines – Patient copy (August 2007) http://www.nice.org.uk/

For further assistance or to receive this information in a different format, please

contact the department which created this leaflet.

25531 V1/Neurology/TSDFT/05.19/Review Date 05.21