1 There are no pills for ME/CFS. The best medicine is good quality rest (in a quiet room, supported by
pillows or cushions), good sleep and a balanced, manageable routine.
2 If you have a secondary medical problem, (even a minor one), try to get it treated or managed - it
may be having a negative impact on the ME/CFS.
3 Pacing is not just about the time it takes to do an activity but also the amount of energy required,
so make a realistic plan and stick to it – don’t get carried away.
4 Buy a stopwatch to limit yourself when doing an activity. When it beeps, STOP.
5 Little things make a difference, for example (i) adjust a pillow or cushion to make sure you are
properly comfortable (ii) don’t have the bath or shower too hot – it’s exhausting (iii) never stand
when you can sit, never sit in an upright chair if an armchair is available. What else would help you?
6 Giving way to the symptoms is not the same as giving in, but sometimes it’s necessary.
7 Let the symptoms tell you they are there, don’t go looking for them.
8 If you overdo it – don’t give yourself a hard time, (but make sure it was for something
worthwhile!)
9 Exercise or activity needs to be based on recovery and strengthening - NOT on a keep fit “go for
the burn" basis.
10 If you’re on the phone when your rest time arrives, tell them you’ll ring back later.
AND A FEW MORE …………
Resting on a good day adds credit to the energy bank. Resting on a bad day is getting out of debt from the energy bank.
When deciding if something is beyond your current boundaries, look at what you have been achieving recently. Match the level or slightly increase – do not make big leaps.
It is easy to get impatient and think “if doing a little is OK, then doing more won’t be a problem” - unfortunately it often is.
Consider which times of the day are best suited to high, medium and low activity. Can some high level activities be broken into smaller segments?
When your body copes with extra activity on odd days it is usually because of consistency the majority of the time, which means ‘credit’ in the energy bank. It doesn’t mean you can overdo it every day.
Try resting more frequently rather than for longer spells. Break the day up into small chunks. Would 10 mins rest every hour work for you, or 3 minutes activity 3 times a hour, depending on how severely you are affected?
If you’re having a bad time, you need to stabilise and go back to a routine you know works, before changing anything.
Don’t wait until you "recover" from ME/CFS to start a new hobby or project – start it now, a little bit at a time, in manageable chunks.
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