This comes up a lot, so I thought I would write a little something to help guide you as to when to increase, stay the same (or possibly even decrease) your physical activity whilst on a GET programme for CFS/ME.
When to maintain:
When you are just starting a baseline of new activity. Keep the same intensity (ie speed) and duration (time) for at least a few days, if not a couple of weeks. It is normal for it to feel quite hard, and for activity to stir up symptoms as a normal physiological process associated with doing more. However if symptoms are stirred up badly and then stay worse, then take the activity back down again and talk to your therapist. No harm will be done, but you just might find it too hard.
When you are increasing other types of activity eg returning to work, increasing your housework or when something unexpected or hectic is going on (eg Christmas, someone being unwell you have to care for). At such times, maintaining your activity might be the most realistic and sensible choice.
When to increase:
Increase when you are ready to. How will you know? Firstly, you’ll want to take it up a step. It will feel right. This is both a confidence thing and a physical thing. Physically, if you have been monitoring your exertion (using a Borg scale) you’ll notice that over time the activity becomes easier as you get stronger. Once it feels easier and the Borg rating goes down, this is the time to challenge yourself again to the next, gentle level.
When to decrease:
We try not to decrease where possible, as it makes it harder to progress, and if we decrease for too long we can get weaker. Decreasing also means that our body doesn’t adapt to the higher level. However, sometimes it just doesn’t make sense to carry on, and pushing yourself if not a good idea eg:
If you are unwell with an infection or fever (tested on a thermometer or when you have other clear signs like sneezing or phlegm on your chest)
If an increase in activity is too hard to maintain, you might want to drop back slightly but try not to drop back to where you were before. You can always do the same amount but in 2 or 3 smaller sections, eg a 6-minute walk could be split up into 2 x 3 minute walks.
There is never really an easy answer to this question, but I hope this gives you some ideas. If in any doubt, you should discuss the best course of action with your therapist.
The NICE guidelines also offers some advice on this, in the full CFS/ME guideline, page 249.