Top Tips

The best medicine is good quality rest (in a quiet room, supported by pillows or cushions), good sleep and a balanced, manageable routine.

A secondary medical problem, even a minor one, can make things a lot worse, try to get it treated or managed - it may be having a negative impact on the ME/CFS.

Pacing is not just about the time it takes to do an activity, but also the high, medium and low amount of energy required.

Make a realistic plan and stick to it – don’t get carried away.

Use a stopwatch to limit yourself when doing an activity. When it beeps, STOP.

Little things make a difference, eg (i) adjust a pillow or cushion to make sure you are fully 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?

Giving way to the symptoms is sometimes necessary - this is not the same as giving in.

Let the symptoms tell you they are there, don’t go looking for them.

If you overdo it – don’t give yourself a hard time, (but make sure it was for something worthwhile!)

Exercise or activity needs to be based on recovery and strengthening - NOT on a keep fit “go for the burn" basis.

If you’re on the phone when your rest time is due, tell them you’ll ring back later.

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.

Do not make big leaps when increasing activity or exercise - look at what you have been achieving recently, perhaps try a 10% increase.

It's easy to get impatient and think “if doing a little is OK, then doing more won’t be a problem” - unfortunately it often is.

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, 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? Perhaps 3 minutes activity 3 times an hour?

If you’re having a bad spell, you need to stabilise - go back to a routine or a "baseline" of rest/activity you know works for you.

Don’t wait until you "recover" from ME/CFS to start something new - start it now, a little bit at a time, in manageable chunks.