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How can children and young people manage activity?

Activity management is not just about physical activity: it involves everything that can affect your energy levels, which of course includes time spent on cognitive activity (such as reading or using a computer) and emotional activity (such as having a good laugh with friends).

Activity management is always best carried out with the support and guidance of qualified health professional who has experience of working with young people affected by M.E., usually based at an NHS M.E. service. You can search our services directory to see if there might be one near you.


Getting started

To begin, you will need to keep a diary or record of mental and physical activity, daytime rest and sleep. This will help to set your baseline levels of activity (that is, the true amount that you can do without making your symptoms any worse). Sometimes you may find that this is less than you think; and sometimes it can be more.

Once this baseline has been agreed, your therapist will help you to agree a programme of gradually increasing activity. This should allow for a balance and variety of different activities, rest and sleep. Sometimes it may be about spreading difficult activities out over a week, or splitting them into small achievable tasks, depending on what would work for you.

By keeping a careful eye on your progress, and by not going too far and too fast, activity management will help you to avoid the "boom and bust" cycle. The programme should include regular reviews, and your therapist should be able to offer you advice on managing any setbacks or relapses.

Not everyone likes to keep a diary, and so we recommend the colour chart method of tracking activity, which is much easier to use, and looks like this:

The blank chart is separated into a twenty four hour clock across the top, with one square for each hour and the days of the week down the side. From this, you can easily see what activities you are doing, and the length of time each one lasted. You can divide the squares up, so if you did something for 15 minutes, you would colour in just a quarter of the square.

There are four levels of activity - sleep, rest, low level and high level and each level has its own colour:

  • blue is sleep. It's important to get your sleep sorted out before you start any kind of management programme. You may want to check out our section on sleeping well for tips on getting a good night's sleep; and if you are still having problems you may want to talk to your doctor.
  • green is rest. This is a period of rest or quiet time when your body can recharge its batteries, and should involve lying or sitting with your feet up, maybe listening to gentle music or a quietly spoken relaxation CD, maybe having a quiet cuddle with someone you care about. Remember that a rest is not watching television – that's an amber activity at least! Rests need to be built regularly into the day, depending on how well you are.
  • amber is low level. What you identify as amber activities will vary depending on how M.E. affects you. Amber activities might include watching an old favourite DVD or flicking through a magazine - things that don't take as much concentration as red activities. Other activities might include music, radio or a story tape playing in the background; having a story read to you, fuzzy felts or furry therapy (which is gently playing with a pet, stroking or cuddling it).
  • red is high level. Red activities are different for each person, depending on how much you are affected by your ME/CFS. So, for some people swimming could be red; for others, it could be washing their hands and face. These are examples of physical activity. Cognitive activities are counted too, so chatting online, working on the computer, watching an intense television programme, school work and reading would all be red. Emotional red activity includes chatting with friends either on the phone or in person, or having relatives or neighbours round all must be taken into account. These red activities are quite obvious due to the after-affects, even though you don't feel them immediately.

So the first thing you need to do with your therapist is sort out which activity you regularly do goes into which colour.


What the chart shows

In our example chart pictured above, you can see how Joe (who was 12 at the time of this chart) was ‘booming and busting' in Week 1, with just high and low level activity and no rest at all. 

His mother realised what was happening and together they started to space out the high level activities with low level activities and rest in between, and especially keeping to low level activities before bedtime. By week 4 Joe was doing the same every day, and had evenly spaced out these activity levels with regular five-minute rests. The result of this was that he had no payback, fewer symptoms and was able to introduce increased planned activity.

If you are severely affected, then it's likely that your chart will show mostly green, (rest) and amber (low level) activities, with only two small red (high level) activities each day. Remember – each person's levels are different. Someone very mildly affected will still need regular rests in the programme, perhaps five minutes every hour, but will have a variety of amber and red activities in between. A rest is doing nothing, but it is not going to bed (unless you are severely affected).


Setting your baseline

In the beginning you need to record at least two weeks where your activities don't make your symptoms worse – this is what we call your baseline. For most young people this can be the hardest part of activity management, as if often means doing less, especially on the computer, television or - for some - sports. 

It can be hard to imagine doing less if you are severely affected, but it could just mean better spacing, or perhaps introducing more variety. Remember – this is only until you have set your baseline. Then, when you are ready and feeling confident, and ideally with the support of professionals, it is important to slowly begin to increase your baseline.


Increasing activity

Once you have established your baseline, and managed to keep it going for at least two weeks, you need to slowly increase the level of red activities by 10% each week – keeping rests in place. This means that if you can do an activity for half an hour, you are only looking to increase it by three minutes per week. There are young people at the very mild end of the spectrum who have decided on a 25% increase, which would be seven minutes each week. By sticking to these very gentle increases and keeping them consistent, the body is able to cope without causing it to relapse.

Week by week, you will reduce the amount of amber activity and increase the amount of red activity, but sticking with regular rests all through. If you find your condition or symptoms are worsening, maybe your red activities are too long, or perhaps something you think is amber is really red!

Of course it's not always easy. Infections can mean a delay or setback, when you have to put off using the plan until your body has had time to recover. This doesn't always mean a return to baseline, though, and if you had already made good progress, then you know you'll be able to get there again. 

If you are very severely affected, in bed and able to do very little, making increases – however small - will need some careful planning and a lot of effort and commitment on you and those supporting you. Even then, it may not be right for everyone.