Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) - children and young people

Helping you recover and making the most of your energy

Managing energy and activity is a key part of dealing with chronic fatigue and helps you to build a strong recovery.

Pacing your activities helps stabilise your symptoms and gives you a sense of control, making things more predictable. It helps you move away from the ‘boom and bust’ pattern of good and bad days, which can leave you feeling stuck in an unhelpful cycle.

Most people with chronic fatigue experience this at some time:

• good day – more energy and feeling better
• rest, taking time off, staying in                                               
• doing more, catching up
• bad day – low energy, more pain, low mood.

Pacing works with your body to make the most of your available energy and avoids making your symptoms worse. Many people find that they begin to improve once they accept the changes brought on by their condition, and follow a realistic and achievable approach to getting better.

Pacing is a way of reorganising how you do everyday things such as attending school or college, keeping in touch with friends and other activities, as well as sleeping and rest. It can actually help you to do more things and feel confident that you will be able to do what you planned.

Pacing includes:

• keeping a diary to show your activities now and any patterns in your energy levels
• setting regular times for daily activities like sleeping, eating, activity and rest
• working out amounts of activity that are right for you
• gradually increasing activities as you feel able

Making the most of your energy

1. What is activity?

Activity is anything you do that needs energy. This includes:

• physical tasks such as getting up, washing, dressing, as well as walking, travelling and sports
• mental activities like watching TV, using the computer, school work, reading, concentrating and multi-tasking
• social time, on the phone or computer, being with friends or family
• emotional situations, having arguments, feeling low or anxious, or being under stress.

Just being in busy, noisy, bright or hot/cold situations can cause fatigue and can affect how well you feel and how much you can do.

Activities vary as to how much energy they take, and understanding this will help you to manage things more effectively.

2. Keep a diary

Keeping a record of when and what you do helps you to look at your own lifestyle, and plan changes that can help your recovery. You will be given an activity chart during your first appointments with the CFS/ME team.

3. Get organised

Before you make changes to your lifestyle it is important to be consistent about what you are doing. It is helpful to fix times for the regular things you do each day, such as your bed and wake times, meals and rest/quiet times. These form a firm structure for you to plan your activities around. This is the start of you being in control of when and what you do, rather than your symptoms dictating when you can do things.

4. Do what’s right for you

Stopping each activity before you get exhausted will really help to stabilise how you feel, avoiding the roller-coaster of good and bad days. There’s more on this under ‘finding your baseline’.

5. Finding your baseline

Your baseline is the amount of activity you can do without making your symptoms worse. This includes fatigue, pain and brain fog as well as anxiety or low mood.

To be effective your baseline needs to be at a level that you can manage on good and bad days.

At the beginning it might feel like you are doing less because you are staying with an average level of activity rather than following the highs and lows of the boom and bust pattern.

Each activity has its own baseline that will change as you improve.

A simple way is to set your baseline at half of what you can do on a ‘good’ day.

It’s also important to think about how often you can manage an activity through the week.

Some examples might be:

• seeing friends twice a week for two hours.

• walking the dog every other day for 10 minutes.

• homework 20 minutes per night.

• on the computer – one hour per evening.

Your therapist will be able to help you work out your baseline for all the usual activities and any extra ones that you do occasionally.

When you have set your baseline you need to give your body time to settle into this new way of doing things. This will vary from person to person, but it usually takes a few weeks. You will be ready to gradually increase when your body can consistently manage the levels you have set, without booming and busting.

Golden rule! Resist the temptation to do more on ‘good’ days.

6. Increasing your activities

Once you feel you can manage the things you have planned, without experiencing boom and bust days, you can start to increase your activity levels.

There are several ways to do this:

• Lengthening the time you currently do an activity – perhaps extending how long you walk for, or do homework. Increasing by around 10% is a helpful guide, so if you currently use the computer for 30 minutes per evening, increase to 35 minutes. Remember not to increase everything at the same time as you might end up overdoing things.
• Increasing how often you do something during the week – such as walking the dog twice a week rather than once.
• Adding in an activity that you have stopped doing, or trying a new one. An example might be introducing a few stretches or exercises each day (your therapist can advise you on this), or making contact with an old friend.

7. The effects of changing activity

Our bodies react to change in many ways. You may notice that rather than feeling good or bad, you may feel just OK for a while. This is a good sign that means things are settling down and finding a level. You may also notice some extra stiffness or aches and pains. This is normal and is your body’s response to doing things differently.

Your symptoms will continue to be there for a while and your recovery will happen alongside them, so focusing on what you can do rather than what you can’t will really help you to move on.

It’s useful to be able to distinguish between the usual effects of increasing activity and the negative effects of overdoing things. Feeling stiff or achey after doing a bit more is normal and to be expected. If you notice you are having bad days after being active, then you may need to review your plan.

A good way to manage this is to go back to your original baseline plan and use that until you feel stable again. The Recovery Process in your resource pack explains this in more detail.

Increasing activity needs to happen at your pace – not to fit in with deadlines or other people’s plans!

Use the activity diary to begin to support progress. It will help you to see what you do throughout the day. Here's a printable version of the diary.

Choose a colour for rest, sleep, low activity and high activity and colour in the boxes at the bottom of the sheet.

As you go through the week, fill in the boxes according to what type of activity you are doing. The numbers along the top are the time from one morning to the next.

As a guide to help you fill it in:

• rest is doing very little – ideally not watching screens, just low level breaks between other activity.
• low activity – things that you can do fairly easily without tiring you (perhaps meals, cleaning your teeth, watching TV etc)
• high activity – things that demand a lot of energy – such as school, shopping, out with friends, emotionally demanding tasks etc.
• sleep – as best you can mark in when you fell asleep and when you woke, rather than just time in bed.

Once you have completed the diary for a week, you may see that each day is different, that you fall asleep and wake at different times, sleep during the day or have busy or quiet days depending on how you feel and what you have to do. This can be helpful as a way of beginning to reflect on your activity levels and noticing how they might impact on symptoms. Filling in the diary can provide helpful information to share with your occupational therapist at initial appointments.

Activity, rest and sleep diary

Please choose a colour for time spent doing each type of activity in the morning, afternoon and evening. For example, red for high energy, blue for low energy, green for rest/chill and yellow for sleep.

Print the diary.

Getting some good quality rest and relaxation is an essential part of the recovery programme for chronic fatigue and promotes a healthy lifestyle.

Making time in the day to take a break from activities helps your body to recover physically, and gives your brain space to simmer down and think more clearly.

Some people find it hard to take time out to rest or feel guilty if they’re not doing something ‘useful’. Thoughts like this can actually make chronic fatigue last longer, so it’s important to see rest as a key part of getting better and staying well.

Rest is important, but we know that lots of rest, and cutting out your usual activities causes lethargy and reduces motivation, so people feel like doing less and less. This cycle plays a part in low mood and can cause anxiety about doing activities, going out or socialising. If you experience fatigue you probably feel you need to rest more –it can be hard to get the right balance.

Your therapist can show you different ways of resting, and how to fit the breaks into your day in a way that’s right for you.

Taking regular breaks forms part of your pacing programme, along with setting your bed and wake times, mealtimes and other activities. For young people we recommend around 20 minutes for a break, three or four times a day. After a meal is usually a good time, or after a busy part of the day – perhaps when you get home from school.

Good resting is about:

• setting aside regular times and planning your day around them
• having a place to rest that is quiet, warm and comfortable. You could customise it for resting by using a special throw or putting on gentle lighting
• switching off your phone and letting people know not to disturb you.
• not watching TV or computer screens
• being in a comfortable position laying down or gently propped up on cushions
• knowing ways of relaxing that work for you.

Ideas for good resting

1. Breathing

When people feel stressed or worried their breathing tends to be quick and shallow, and only uses the top part of their chest.

This is called hyperventilation, and can cause dizziness, pins and needles, fast heart rate and chest pains. It makes people feel alert and vigilant because it’s part of the body’s natural stress response (the “flight or fight”), but it’s not helpful if it becomes a habit. It requires excess energy to sustain and can lead to feeling agitated, or uptight, which then makes it very hard to relax.

Learning to breathe more deeply is an important part of being able to rest and relax effectively. It helps you to switch from a state of activity and alertness to feeling calm and able to switch off (“rest and digest”).

Understanding your breathing

Put one hand on the top of your chest and the other on your tummy. Which hand is moving up and down the most when you breathe?

Try breathing in slowly through your nose and into the bottom of your lungs – you should feel your tummy rising while your chest only moves slightly.

When you take a breath in, pause for a few seconds and then breathe out slowly, gently pushing out all the air. Repeat this 10 times, going at your own pace.

Keep focused on your breathing, just thinking about how it feels as the air moves in and out of your body. Does breathing like this make you feel any different?

How to use breathing to help you relax

The chronic fatigue team uses Mindfulness to help people in their recovery. Mindful awareness has been shown to help people both physically and emotionally – and a focus on the breath is a key part of the approach. Ask your therapist for more information and to borrow a CD or book.

2. Visualisation

When you have found a comfortable position and started good breathing, think of a restful place you have been (or make one up) that you really enjoyed. It could be a warm, sunny beach, in a forest or a lovely garden.

Imagine walking along, thinking about what you can hear, see and smell, and what the ground feels like under your feet. Imagine laying down and listening to the sea, or the birds.

If you notice that your thoughts have drifted off to something else, just think about your breathing – following your breath in and out – and return to your scene again.

When you want to finish, imagine you are getting up and slowly walking out of the special place still thinking about the sounds and smells as you go.

3. Body scan

Once you are lying comfortably and breathing calmly, close your eyes and think about your feet. Imagine how they look ask yourself how they feel. Spend a few moments really focusing on them. You could imagine that as you breathe in, the muscles and bones in your feet are being soothed by fresh, clean air and then, as you breathe out, you breathe away all the aches and pains and tension.

Gradually move up your body to include your ankles, shins, knees, thighs, hips, tummy, back, chest, shoulders, arms and hands, neck, head and face.

As you breathe out imagine that your body is getting heavier and sinking lower into the bed or chair.

When you are ready to finish, focus on the noises you can hear in the room around you and then move gently as you open your eyes.

4. Using your senses

Each one of us has favourite senses to help us relax. You might not be aware what works best for you, and you probably choose things automatically without thinking about it. Knowing which senses you find calming can make resting easier and more effective.

Problems with sleep are very common in chronic fatigue but trying to stop tiredness by sleeping more usually makes things worse

This fact sheet will give you some useful information and tips on how to manage your sleep as part of your recovery programme.

Good sleep allows your body to rest and relax and helps the healing process. It is important for maintaining brain function, such as thinking, concentration, planning and memory.

Research suggests that it is possible to have too much sleep. Most teenagers need around nine hours – more than this can cause lethargy, headaches and muscle pain, stiffness, reduced concentration and may affect motivation and mood. The more you sleep the less refreshing it becomes.

Sleep difficulties may be caused by:

• irregular bed and waking times
• sleeping in the day
• worry or stress
• emotional upset (such as an argument, or low mood)
• pain
• nausea – feeling sick or tummy pains
• eating sugary or stimulating foods close to bed time
• watching screens before bed
• doing a demanding activity in the evening
• being too hot or cold
• bright lights or noise
• using your bed for lots of activities, or spending waking hours in bed.

There are several ways of improving your sleep pattern and the quality of your sleep.

It may be useful to keep a diary of your sleep – this is a good starting point to understanding what is actually happening and can help you monitor changes.

It is useful to start with practical strategies to help re-establish a regular sleep pattern. Looking at other factors that may be affecting your sleep, such as low mood, worries or pain will also be helpful alongside the practical changes.

1. Decide on a regular time that you will go to bed and get up. This will help your body and brain get used to switching off at the same time each night. The waking and getting up times are particularly important in setting your sleep pattern, so get up at the same time no matter what time you went to bed/fell asleep.  Don’t change things too much to start with – it’s more important to fix times close to what you do already and make changes gradually.
2. Allow time to wind down at night, perhaps with a book, audio book, or music on headphones. A warm bath or using a relaxation/meditation technique can be helpful. Do the same things in the same order each night – these will become signals to your brain and body that you are getting ready to sleep.
3. Avoid food or drinks that contain stimulants such as tea, coffee, chocolate or fizzy drinks before you go to bed.
4. Switch off screens, including phone, TV and computers at least half an hour before sleep.
5. Make sure your bedroom is a comfortable temperature and sort out any problems with light, noise or other disturbance if you can.
6. Use your bed only for sleeping. Don’t watch TV or do other activities such as homework in your bed. Try not to use it during the day – your bed will become a signal only for sleep. Don’t have things on your bed, such as magazines, phones etc which can distract you from sleep, or restrict your movements.

Difficulty sleeping

Worrying about not being able to sleep can make it even harder to relax and fall asleep as it stimulates hormones like adrenaline.

• reassure yourself that “sleep will come when it’s ready”
• if you have been in bed for more than 20 minutes and haven’t fallen asleep try getting up and walking around or sit on the edge of the bed to ‘cool off’
• have a drink, or go to the toilet if you need to, but don’t get involved in any demanding or stimulating activities such as computer or TV.
• work through your wind down routine again to signal to your brain that you are preparing to go to sleep. Do this as many times as you have to.
• use a relaxation technique, such as imagining relaxing each part of your body bit by bit, or visualising a restful / happy place. Breathe slowly and gently - see the fact sheets on rest and relaxation for more ideas.

Worrying thoughts

If you can’t sleep because your thoughts are going round and round, and you’re worrying about things it can be helpful to have a ‘worry time’. This can be a time in the day, or before you go to bed when you can think or talk about any worries you have, and what you can do about them. Sometimes it’s useful to write them down – this can help you look at them objectively and work through some problem solving ideas. Alternatively, learning how to ‘let go’ of troubling thoughts is a useful way of finding some calm even when things around you are difficult.

Your mental wellbeing is an important part of your recovery – if you think that low mood and anxiety is a problem for you please tell your therapist. There are lots of ways to help you work through this.

Day time sleeping

Some people get into the habit of falling asleep in the day time because of exhaustion, and often say they can’t do without it.

If your body has got used to sleeping in the day, perhaps when you get home from school for example, it is not helpful to try to change things too quickly.

• Start by keeping a record of when you sleep in the day and for how long. Work out an average time you sleep for and set a limit, either by using an alarm or by asking someone to wake you at an agreed time.
• You will need to stick to these times, even if you feel you could sleep for longer on some days.
• Once you have regulated your daytime sleeps, you can start to reduce their length gradually by say, five or ten minutes a week.

Reducing your daytime sleeping works best when you are also following a nighttime sleep plan and resting for short periods in the day. Once you start pacing your daily activities in this way you will start to notice that you need less and less daytime sleep.

Changing your sleep habits will feel strange for a while and may go against what you think your body needs. Actually, you need no more sleep than your friends.

Sticking to the plan will help your body clock to readjust and your sleep will improve. As you gradually start to do a little more activity, and a broader range of things, your sleep will continue to get better.

Watch a series of short videos, put together by NHS colleagues in Torbay and South Devon, to help you manage your mood, sleep and activities, and set realistic goals for your recovery. Watch the video clips.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a long-term condition with a wide range of symptoms. The most common is extreme tiredness.

ME/CFS is often triggered by a viral illness such as flu or glandular fever, but can also occur after a trauma or emotional upset. Less commonly there is a gradual onset with no clear starting point.

It can affect anyone, including children and young people. Although it can affect both sexes, it is more common in girls.

The symptoms may last for many months, often affecting the young person's attendance across several academic years. Relapses can be common. ME/CFS is a condition which affects all aspects of a young person’s life including their school, social and family life.

Below, patients discuss their journey from diagnosis to treatments to coping strategies.

Links to other services

• Adult CFS/ME Service

• AYME

Helpful information for young people and families:

• Dorset Special Educational Needs and Disability Information, Advice and Support Service 

• Children with special educational needs and disabilities (SEND)

• Dorset Youth: young person page 

Pain

• Retrain Pain Foundation
• Painbytes: Pain Management Network 

For children and young people with more severe symptoms: Disability Living Allowance (DLA) for children.