Activity management is not a cure for ME/CFS, and it may not be the answer for everyone, but it is a therapy that can help you get back in control of your life by gently and slowly improving your levels of activity, without worsening your symptoms. It's a strategy that is being adopted by specialist services.
Activity management is about finding out what you can already manage without making your symptoms worse, then setting and achieving goals that encourage you to make very small increases to your activity. It's tailored to you, and like other therapies, should be carried out in partnership with your therapist. This should be a programme you own and can feel comfortable with (many young people trying this say they feel as if they are back in control instead of their lives being dictated by ME/CFS).
The biggest difference between activity management and GET is that your programme is not just about physical exercise: 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 (perhaps having a good laugh with friends).
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.
What's the difference between activity management and pacing?
Pacing is very similar to activity management, but does not involve the same level of goal setting. Activity management is about taking a carefully managed approach to actually increasing your capabilities.
AYME's activity management programme
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.
Each level has its own colour. Blue is sleep, green is rest, amber is for low level and red is high level. 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, you can see how our member (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. At the start of Week 2, there are still too many high level activities together and close to bedtime, with very few low level activities or rest periods - which means he has no energy left at the end of the week.
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 he is doing the same every day, and has 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 or yellow (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 5 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.
Once you have established your baseline, and managed to keep it going for at least 2 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 3 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 7 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. And If you have been very severely affected for years, 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 your carer's part. Even then, it may not be right for everyone.
Activity management is always best carried out with the support and guidance of an experienced therapist. Please feel welcome to call us if you need more information: 0330 221123
For further information on activity management, here are some useful links:
ActiveME ActiveME helps you track your energy levels, shows your energy patterns and helps you plan your activities to achieve your baseline and then to safely increase your activity.
Royal National Hospital for Rheumatic Diseases This page offers useful links and information on rest, activity and sleep.
Activity management colour key
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.
high level activity
- 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.
low level activity
Again, what you identify as amber activities will vary depending on how ME/CFS 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!).
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.