This written guide was prepared to supplement the Foundation Phase Online Course videos, which can be found here. The guide suggests trying out changes in the way that you manage your ME/CFS, but we also know that these changes can be difficult to make. If you are finding it difficult to put any of these strategies into place, please discuss this with your individual clinician. This will usually be the clinician who assessed you.
This written information is available in a pair of pdf booklets with diagrams so if you would prefer to have the information in that format: please email BristolME@nbt.nhs.uk and ask the Bristol M.E. Service administrators to email you both of the Foundation Phase workbooks.
What is ME/CFS?
The main symptom of ME/CFS is a mental and physical fatigue which feels different from normal tiredness.Along with this are a range of other symptoms which can include:
- widespread muscular and/or joint pain
- sleep disturbance and unrefreshing sleep
- difficulties with concentration and memory (“brain fog”)
- feeling fatigued and ill after activities
- sore throats and tender glands
- dizziness and balance problems
- odd sensations like pins & needles and numbness
- sensitivity to light and noise
- digestive disturbance
Different people experience some symptoms more than others. For example, pain can be a big problem for some, and not for others. The condition affects people in different ways: some people are mildly affected, moderately affected,
or severely affected. Some people have setbacks or relapses, other people are more stable.
What causes ME/CFS?
We often meet people who have developed ME/CFS following an infection, such as glandular fever. Other people have identified a significant amount of stress, or many stressful situations occurring together, or a long period of stress, which is thought to increase the odds of developing ME/CFS. A combination of an infection and stress is commonly reported. Occasionally, it seems to come “out of the blue”. Researchers are beginning to put together a picture about how the condition develops and the changes which take place in the body as a result of illness, but the exact mechanisms underlying ME/CFS are still unknown. Our current understanding is that the immune system and the nervous system are likely to be involved in ME/CFS. It is possible that the potential to develop ME/CFS may be partly connected with our genetic makeup. When an individual develops ME/CFS their external appearance does not usually change. This sometimes leads people who do not know anything about ME/CFS to conclude that it is a psychological problem. ME/CFS is not a psychological condition, but what we think and how we respond physically in this situation can influence the course of the illness in a helpful or an unhelpful way. With ME/CFS the body’s systems are said to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the stressors such as noise, light or physical activity can have a big impact on the symptoms of ME/CFS.
Approach used by the Bristol M.E. Service
Our Service aims to help patients and their doctors to identify the condition, and then offers support to manage it as effectively as possible. This guide is put together to accompany our “Foundation Phase” ME/CFS self-management course. It also supports the individual work done between one of our clinicians and a person with ME/CFS who is trying to improve their management of the condition. The manual covers a wide range of issues which are important to our patients. You will need to work with your clinician to work out the best self management strategies for you and your particular situation.
The Consequences of ME/CFS
These are some of the consequences of having ME/CFS which our patients report:
- it’s hard to plan
- paid work, voluntary work and housework are affected
- it can be hard to get refreshing sleep
- it affects relationships with family and friends
- physical activity is reduced
- it’s hard to concentrate for work and study
- pleasurable activities are often stopped
Planning can be difficult because “ups and downs” in the condition are common.
The Activity Cycle – “Boom and Bust”
People with ME/CFS often describe having varying amounts of fatigue from one day to another or even within the same day. This can make it difficult to decide whether or not to attempt an activity. Most people tend to do more when they feel a bit better and not as much when they feel unwell. You may find that you “overdo it” one day and then have several days recovering. This can lead to big swings in activity over time: this is known as the “boom and bust” approach or “activity cycling”. A graph of activity plotted over the days would show the “ups” of increased activity, and the “downs” of the recovery phase, looking a bit like a rollercoaster.
The signals that the body produces can sometimes be an unreliable guide as to what we should or should not be doing “in the moment”. This is very different from more recent or “acute” illnesses such as having a stomach bug. With an acute infection, the body reacts by making us feel unwell so that we rest more. When we feel better this is a sign that the illness has passed and we can get going again. ME/CFS is different to an acute illness: listening to the body on a moment-by moment basis to decide what we should or shouldn’t do is often unreliable because of the delayed increase in symptoms after activity known as Post Exertional Malaise. On days when you feel slightly better it is not necessarily a sign that the illness is passing. A different set of tactics is needed to manage ME/CFS effectively.
How can this ‘boom and bust’ approach to activity be changed?
- Recognise that this is how you tend to approach activity.
- Keep records such as an activity diary, this helps you to work out your baseline, and any planned increases later on. You might find it helpful to keep an activity diary.
- Analyse how much of an activity you can do on a good day and a bad day. Find a manageable level you could sustain: a similar amount each day. In practice, this will usually mean that you set a baseline of activity which starts out being lower than you would normally do on a good day. See section below on setting baselines.
- Balance periods of activity with regular short rests. See section below on pacing.
- Set realistic goals to help bring about change. You can discuss goalsetting with your clinician in your individual appointment.
What is Pacing and how can it help?
Pacing is all about balancing daily activity and rest to get control over a “boom and bust” pattern. The word ‘activity’ is used in a broad sense, to include mental and emotional activity, as well as the more obvious physical sort. Pacing is also known as “activity management” or "energy management". To understand pacing, it can be helpful to think of your available energy as being like a mobile phone battery:
- If you completely drain the battery, you have to wait to recharge it before you can use the phone again.
- If you use some of the battery and make regular top-ups, then your phone will always be ready for use.
Before you start pacing you need to keep a record of your activity levels. You then need to decide on a baseline level of activity which you could do day after day, all things being equal. You would then try and keep your activity close to your baseline level. This will mean “holding back” on a better day. By holding back on a good day, you should have fewer bad days, and life becomes more predictable. There may still be some ups and downs with symptoms, for a range of reasons, such as poor sleep or infections. Pacing gives you awareness of your own abilities and limitations, which enables you to plan the way that you use your energy, prioritising what you can do with it. The graph of activity for someone who is pacing themselves would show a similar amount of activity on more days that the Boom and Bust pattern. Pacing can also provide a stable foundation of activity to build up from.
Many people have setbacks, when their symptoms get worse for a period of time. We advise people to ‘pace down’ during these times, and work to a lower baseline. People can then gradually ‘pace up’ again as they recover from the setback. This is like moving up through the gears of a car, rather than jumping straight into fourth gear on the first good day after a setback. We have a separate information sheet about managing setbacks. Over a period of time, when you can consistently manage your baseline level you may find you feel you can manage a bit more and can consider trying a small increase. This is sometimes called ‘pacing up’. Your clinician can support you with ‘pacing up’ activities if you’d like to try this approach.
What pacing is NOT about
It can be as important to understand early on what pacing is not about. It does not give you a free hand to push through activities, with enforced rest and recuperation (also known as “crashing”) afterwards. Pacing takes an altogether smoother approach:
- If you are prone to trying to cram in as much activity as you can in the morning, then have to rest during the afternoon or the next day to recover, pacing helps you to break this habit.
- Similarly pacing discourages you from gathering energy through the day and then attempting a burst of activity later in the afternoon or evening.
Having said that, one of the advantages of knowing your baseline levels for different activities is that you know beforehand when you are likely to “overdo it”. This helps if you are likely to be overdoing it because you need to, or because you want to. You then know that you are likely to need to rest more afterwards and can make arrangements. This knowledge increases the amount of control you have over situations.
“Stop rules”: four different ways of knowing when to stop an activity
There seem to be four main ways that people use to know when to stop activities. It is worth knowing about these “stop rules”, so that you can learn which one you use most of the time. You may then choose to use other “stop rules” to get more control.
Stop Rule 1. “Fighting it”.This is somebody who tries to carry on with activities until their symptoms become so intrusive they have to stop. They “hit the wall”. They may say: “I won’t let it beat me: I carry on until I have to stop”. In this situation, they rely upon severe, intrusive symptoms to tell them when to stop activities. This person is more likely to fall into the Activity Cycle trap. However, they may get more done in the short term.
Stop Rule 2. “Listening to my body”. Some people notice a gradual increase in symptoms, which they start to identify as warning signs to stop. They will stop their activities sooner than somebody who is “fighting it”. They may say: “I listen to my body: it tells me when to stop”. This person is less likely to fall into the Activity Cycle trap, if they are able to notice the warning signs in time. One of the downsides of this strategy is having to pay regular attention to these symptoms to watch out for the warning signs. For many people, the warning signs come too late, for example the next day: this is known as Post Exertional Malaise.
Stop Rule 3. “Time-contingent pacing”. Using this stop rule, people learn from experience how long they can successfully manage an activity for. They may use a diary to work out what they can manage sustainably, day after day. They may say: “I keep an eye on the clock, because I know my limits. That way, I have some energy left for later”.
Stop Rule 4. “Activity-contingent pacing”. Using this stop rule, people learn from experience how much of an activity they can manage successfully. They may say: “I can iron two
shirts, then I have a rest, even if I feel I could do a third one straight away”.
Think about the four ways of knowing how to stop. Which one do you use more often? What are the “pros and cons” of the different stop rules? Remember, ME/CFS symptoms usually
feel worse a day or two after activity, so they are often not a reliable guide as to when to stop. Setting a baseline uses either the third or fourth stop rule. An
amount of time or activity is worked out that can be used as a guide to know when to stop.
Baselines - knowing when to stop, to avoid the activity cycle
- Find a low level of activity that you could manage on a daily basis: this is your “baseline”.
- Aim to keep your activity at your planned baseline level: don’t be tempted to do more on a good day.
- Aim to do the activity on most days to avoid falling into the Activity Cycle trap. Establish a routine.
- Use a recording system to allow you to keep track of your baseline, until it becomes “second nature” to be aware of it.
One way of setting a Baseline: the "50% rule”
- Start by trying an activity at a level that you think you will cope with easily. Don’t feel that you need to push yourself to achieve your “personal best”.
- Record your achievements.
- After three days, work out the average that you have managed. Then decide whether you will realistically manage to keep up this average; if not you may need to lower your sights, perhaps reducing your baseline to 50% of the average.
- Remember: you are aiming for a sustainable level which could then perhaps be built on to gain medium and long term improvements, not a quick change!
It is possible to work out your baseline for walking, or other activities which are important for you such as reading, computer use, and social activities. Once you have worked out your baseline, aim to stick to it until you are confident that your baseline is normally manageable.
Activity levels can be analysed by being aware of the amount and intensity of energy required. It can be helpful to think of activities arranged along a line with sleep and rest at one end and high energy activities at the other. Balance is required - how would you feel if a day consisted of entirely low and restful activities? Or if they were all high? If you do have a day like this what happens? Many people report that this is what the boom and bust cycle feels like - a day or days or a part of a day doing high level activities then a long time recovering and only being able to do low or restful activities.It can be helpful to know what activities you find restful, low demand, medium and high demand, and try and get some balance between the different levels. You can use this awareness to plan your day or your week so that the activity types are spread out.
A patient’s story
One of our patients has kindly agreed to be videoed talking about her story. Her name is Meline. In the video, she talks about the symptoms that she had and the difficulties they were
causing in her day-to-day life. She also describes the strategies that helped her to gain more control over her ME/CFS and make progress with her goals.
We thought that it may help you to listen to Meline’s story, particularly if you have recently been diagnosed and are in the early stages of learning about ME/CFS.
The video is available from the North Bristol NHS Trust website. To access the video, follow this link: www.nbt.nhs.uk/melinesstory
Rest: ways of using rest, and how to get good quality rest
Rest can be used to both conserve the energy you have and to recover from expending energy. Quality, recuperative rest is not the same as sleeping or low-demand activity, such as reading or watching TV. Being able to rest effectively can shorten your rest periods and can enable you to do more of the things you want to do. Long periods of rest can lead to a loss of fitness, so shorter, more effective rests can also stop you becoming weaker. Quality rest can involve learning relaxation methods such as progressive muscle relaxation, ‘grounding’, or relaxed breathing to relax body and mind.
Effective relaxation can then become part of your life, and how you manage your energy. Here are some ways you can go about using rest. We would suggest you try these as an experiment - work out what works for you.
1. Plan your rests for the day: this helps you regulate your energy expenditure over the day and makes sure you do stop and rest. One advantage of having regular planned rest is that the body learns when it is rest time and goes into a deeper relaxation more efficiently.
2. If you have a high energy demanding activity in your day, plan to rest before you do the activity and afterwards too.
3. Once you have learnt a relaxation method, then try making an activity easier by using the method, for example using a breathing exercise while waiting in a shopping queue or sitting on the bus.
4. Try taking a quick “breather” every hour - 2 minutes or even less of a breathing exercise may help to reduce the energy drain. One way of thinking of this is to call it a “non smoking fag break!”
5. If you are watching TV, then try and do a relaxation method before you turn on the TV , or in breaks between programmes.
When scheduling your day/week think about the following:
- When are your high level activities today / this week?
- Can you use rest before and after these high level activities?
- Can you use low level activities in addition to rest?
- Can you use relaxation techniques in addition to rest?
- When else can you use rest to help you with your activities?
ME/CFS and Sleep
Most people with ME/CFS experience sleep difficulties. Some people will have difficulty falling asleep, or have broken sleep. Some people will have the opposite problem, and will sleep more than usual. This can reduce the quality of sleep, and leaves fewer hours awake to function. A sleep problem will usually add to the various other difficulties which already occur as a result of ME/CFS. Exhaustion and poor concentration are examples of this.
Can anything be done about sleep?
ME/CFS may cause problems with sleep, especially unrefreshing and disturbed sleep, but this is rarely the only reason why sleep is disturbed. The good news is that these other influences can be changed to improve sleep.
What is a normal good night’s sleep?
This varies from one person to the next, and changes as people get older. New born babies sleep for 18 out of 24 hours, young children up to 12 hours, young adults on average sleep for about 7 to 8 hours, whilst older people take even less, about 6 hours on average. So, how does your sleep compare with what you would expect to be getting? If you are concerned about this
the next question is:-
What is the nature of the problem?
Is there a problem getting off to sleep? Do you keep waking up throughout the night? Do you wake early and cannot get back to sleep again? Is it that despite having slept you don’t feel you have slept well? Do you feel the need to sleep longer in the morning, go to bed early, or sleep in the daytime? Over-sleeping can increase levels of fatigue, worsen concentration, and reduce motivation and enjoyment of life. It is important to work out what kind of disruption is taking place. This helps in deciding what changes might help.
What conditions are you trying to sleep in?
Give some thought to how comfortable your bed is. Next, is the room helping? Temperature is important. It’s hard to sleep when it’s too warm as well as when it’s too cold. Are there any noises disturbing you which you could do something about? Some people are better able to sleep when there is a little noise going on in the background, and can’t sleep when it’s too quiet.
What is the ventilation like? Some prefer a window open but others find it too cold or a distraction. Try to get the conditions right to suit your needs.
Food and drink
Going to bed after a big meal is usually a bad idea. Big meals do make people feel tired but digesting a large amount of food will keep many people awake. If on the other hand it has been a long time since your last meal, then hunger can keep you awake. If so, a light snack before bedtime may help.A hot drink often helps as a way of settling down to go to sleep.
However, drinks with caffeine or other stimulants in them are not a good idea. These include coffee, tea and chocolate. Caffeine is a stimulant and is known to disturb sleep. This effect will last for several hours after drinking it. The more caffeine you have in the day the more likely it is to affect your sleep. If you do have drinks with caffeine in, and you do have sleep difficulties, then it is worth cutting the caffeine level down. It can help simply to avoid caffeine in the six hours before bedtime. Some people need to avoid caffeine in the afternoon and evening altogether.
Alcohol is, in a sense a relaxant, (the opposite effect to caffeine). On the face of it a late drink might help you get off to sleep, hence the idea of a “nightcap”. However, there is some evidence to suggest that sleep which is affected by alcohol is less restful, and also alcohol can make many people with ME/CFS feel worse.
Smoking and sleep
Nicotine is a stimulant, like caffeine, and there is strong evidence that smokers usually don’t sleep as well as nonsmokers. Happily, for those who give up smoking the evidence shows that they get off to sleep more easily within days of stopping. For those who don’t want to stop but are having problems getting off to sleep it is worth trying not to smoke in the three hours before bedtime. This will probably make sleeping worse to begin with as your body gets used to not having the nicotine, but you will quickly adjust, probably within three days.
Medications and sleep
Different medications do have important effects on sleep. If pain is disrupting your sleep, it might be worth discussing the pros and cons of different pain medication with your GP or a pharmacist. Simple painkillers can help, but some people benefit from medications like Amitriptyline, taken in very low doses, about two hours before bedtime. Your GP can find advice about sleep and symptom management in a guide available from the British Association of Clinicians in ME/CFS called the “BACME Guide to Symptom Management”. You can find this at the bottom of the home page of the BACME website: www.bacme.info
Physical activity and sleep
There are strong links between physical activity and good sleep. ME/CFS leads people to be less active during the day. This will make sleeping more difficult. On the other hand if you have been able to gradually increase the amount of activity you do in the day you may be already reaping one of the benefits: better sleep. Brisk exercise taken late in the evening tends to liven people up when it would be better to wind down. Some people manage gentle exercise such as stretching in the evening
without disrupting their sleep.
Emotions and sleep
Some people will say that they do their worrying at night when everyone else is asleep. Although you might say that there’s nothing you can do when you’re in bed to sort your anxieties out, it’s sometimes hard not to worry anyway. If you want time to think things through on your own, it can be better to do this earlier in the day. Plan a time earlier in the day to think about your concerns, perhaps writing them down, as many people have found this process useful. Try to associate going to bed with going to sleep.
Some people will wake in the night and find they are unable to go back to sleep. If this is happening, and if you think that you are not restful and are likely to not drift off to sleep again afterwards then it can be better to get up and do something quiet, and preferably boring until you start to feel sleepy.
The golden rule for good sleep: establish a regular pattern
It’s possible to ignore most of the rules about sleeping and still manage all right. There are many who have a cup of tea and cigarette before going to bed, or who take the dog for a walk. They probably manage this because it is part of a regular habit of getting ready to go to bed. However being inconsistent with the time that you sleep is asking for trouble. You need a pattern.
Taking care of this is by far the most important thing you can do. Getting up late one morning, and then early the next is disruptive to sleep. Your body needs a pattern. It needs to know when to expect to sleep and to wake. We can’t change the time of sleep a lot and assume our bodies will adjust. This is basically what has gone wrong when someone flies to another part of the world and experiences “jet-lag”. Another example is what is known as “Sunday Night Insomnia”, when someone who has gone to bed late on Saturday night and got up late on Sunday morning then finds that they can’t get off to sleep at the usual time on Sunday evening. If you want to improve your sleep at night and you sleep in the day, make a plan to gradually reduce any daytime naps, because otherwise this will become part of your 24 hour pattern. Daytime sleep can reduce the quality of night-time sleep. This is because it changes the pattern of deep (restorative) sleep which we get in the night. The only exception to this is a daily “power nap” of 20-30 minutes which can help some people to reduce daytime sleepiness.
If you sleep for much more than eight hours, it might be worth trying to reduce your sleep, so that your sleep quality can increase. You will need to do this gradually, to allow your body to adjust. Most people find it is easier to set an alarm clock for a fixed time in the morning, and then slowly move the alarm clock earlier. There is nothing wrong with a 10 or 15-minute
change every week or two, if you are making progress in the long-term. The reason for making the change in the morning is that our “body clock” is set when we first see daylight in the morning. Once the “body clock” is set, we will tend to feel naturally ready for sleep approximately 16 hours later. Opening the curtains a little can help with this process, but the sooner in the day that you can tolerate outdoor daylight the better.
During the initial phases of any sleep reduction program people often feel more tired, but this usually improves within two to three weeks. The rewards for this in the long-term are better sleep quality, and more hours in the day in which to balance activity and rest.
- Good sleep is about quality not quantity.
- Gradually reduce daytime sleep. Substitute with more rest periods.
- Aim for a regular bedtime, and more importantly, stick to a regular time to get up.
- A good balance between activity and rest during the day will help.
- During the evening, particularly just before bedtime, it helps to have a regular set of activities that help you to wind down. Take less exercise at this time of day, avoid stimulants such as coffee, and avoid other things that wind you up.
- If you wake in the night and can’t get back to sleep straight away (20 minutes) you might do better to get up. Try to relax and take rest instead. Only go back to bed when you have a good chance of falling asleep again.
ME/CFS and Stress
Stress is a normal reaction to the challenges we face in life. A certain amount of stress is necessary to keep us all going; without it, we would feel bored and listless. However, continued stress over a long period of time can be exhausting, and if your energy levels are low due to ME/CFS, the additional drain on energy because of stress is a particular problem. People differ both in the way that they react to stress and the extent to which they are aware of their own stress levels. Stress may have different effects at different levels: it may affect us biologically, physically, emotionally and in the way that we behave. It can also have cognitive effects: poor concentration, memory problems, and difficulties making decisions. All of the reactions above are normal. When we face a physically threatening situation these responses help the body prepare itself for action. This is known as the “Fight or Flight” response because the body prepares itself to fight, or run away from dangerous situations. This is a helpful, instinctive response. When the dangerous situation is over, the body can begin to recover. In modern society, a lot of the things that create stress are not dangerous situations where we can physically fight or run away from something. For example, financial worries or family problems can make us feel under stress. In these situations stress levels may rise and remain quite high, and after a while we may begin to feel the effects of this. Over a long period of time stress can make us feel exhausted and unwell. Some of the symptoms of chronic stress are the same as those of ME/CFS. How can we know which is which?
Managing ME/CFS and stress
Long term illness can cause its’ own worries. Worrying can trigger the stress response, and muscles then become tense. Changes in muscle tension can be quite subtle, and it is difficult to be aware of it happening. This increased tension can worsen fatigue, and aggravate any pain, leading to more stress and worry: a “vicious circle”.
We also tend to put ourselves under stress by doing some of the following things:
- Taking on more than we can do
- Not saying “No” to people
- Not being satisfied with what we have achieved
- Not having enough relaxing things to do
Being aware of some of these things can be useful. There are positive management strategies for stress, and for the symptoms of stress.
Reducing stress through relaxation
Most people already have things they tend to do when they feel quite stressed - there are lots of possible ways of tackling it. For example, some people listen to music, talk with a friend, or go for a walk. Regular exercise can also help to reduce tension in the muscles, and give a feeling of wellbeing. Sometimes your usual methods of handling stress may become less effective when stress rises beyond a certain point. It is useful during these times to have some specific methods of dealing with it.
It can be useful to become aware of the signs of increased tension and stress so we can spot them at an early stage, and manage the stress differently. Listening to a relaxation is one way of beginning to become more aware. Learning to relax means that you can reduce muscle tension and break out of the vicious cycle of fatigue, stress and tension, which can be worsened when living with ME/CFS. Relaxation is different from watching TV or reading a book; these activities may be tiring in their own right. When practising relaxation you need to find somewhere quiet and warm, where you can find a comfortable position and you will not be interrupted.
At the beginning relaxation may be frustrating if you find it difficult to concentrate or feel it is not working. It is a skill, and is likely to take a bit of practice. Remember that there are different forms of relaxation, to meet individual preferences. It is worth seeing the initial stages as an investment of time, which can pay dividends in the medium and long term. Daily practise will give the best results.
You can download relaxation recordings from our website: www.nbt.nhs.uk/relaxation. Start by listening to the guidance, then if you are happy with the instructions, try the method yourself. You may need to practice each method several times to learn how to relax. If you are not making progress with these recordings, please discuss this with your ME/CFS clinician.
Finally, be aware of any effects of stress upon your sleep, or upon your ability to use rest. If you notice that you are awake at night feeling stressed about not sleeping, you can try using your relaxation skills to help. Clock watching at night is a common mistake: it can increase stress levels and make it harder to sleep. Can you use relaxation methods to help you to sleep, or to help you to rest more effectively? You may also benefit form learning meditation, which is different from relaxation. You can discuss this option with your clinician if you are interested in finding out more.