ME/CFS and Movement/Exercise

For many people with ME/CFS exercise is seen as a dirty word. However I believe it is a very important part of illness management. Movement and exercise help maintain good circulation, making sure oxygen and essential nutrients get to all our cells, and toxins and waste products are removed. Our lymphatic system which is an important part of our immune function is a circulatory system without a pump and needs movement to help it to flow.
With this condition, however, we may have to rethink the concept of exercise and make sure we cut right back at any time we seem to be struggling. For many of us simple movements mobilising each joint and /or some gentle stretching will be enough. For others, exercise may include a short walk which could be anything from a circuit of the back yard to a stroll around the local park depending on energy levels.
I choose to use the term movement/exercise to encompass the wide range in energy levels experienced by sufferers of this condition.
The are two fundamentals to movement/exercise for ME/CFS: stay within your daily energy ‘envelope’ and avoid exertion. We shouldn’t be aiming to get out of breath or get our heart pounding we just need to do whatever we can to help maintain good circulation. If we can take an attitude of relaxed effortlessness towards our exercise and make sure we stop and rest as soon as we notice effort increasing, we should be able to safely move our bodies enough to benefit our health.
To stay within our energy envelope it helps to have an idea of how much movement/ exercise we can include in our daily routine at our sustainable baseline of activity. That is, how much we can do on an average day on an on-going basis without making ourselves worse. Then, when we recognise that we’re having a worse than average day, we can cut back on our exercise to make sure we don’t use more energy than we readily have available to us. Spending a couple of weeks monitoring your activity levels along with your energy levelscan give you a clearer idea of your sustainable baseline.
I think it’s also important to consider the stage of your illness. If you’re still at the acute stage (the first few months) then restfulness is key and you should keep to very low-energy, gentle movements. The same goes for any day that your energy is considerably lower than your ‘normal’. This might be whilst you are fighting off a new infection, after overdoing things, during a season change, or maybe just because of a subtle hormone change in your body. At other times we need to find a way of including gentle exertion-free exercise in our daily routine.
I have found it helpful to spend at least two short sessions a day focusing on movement. T’ai chi first thing in the morning and gentle yogatype stretching late afternoon works best for me. If you are well enough you could also include a short walk. A few minutes in natural daylight every day, has the added benefits of helping to regulate your body clock and boosting vitamin D levels.

Tips for keeping exercise safe:

  • Explore your sustainable baseline of activity and listen to your body. Are you having an average, better or worse than average day today?
  • If you feel you’re getting better and want to increase your exercise, do so by tiny amounts and only on your good days to start off with. If this small increase proves to be sustainable then you can add another.
  • Avoid exertion, aim for relaxed effortlessness. Stop whenever you notice that the effort involved is increasing.
  • Pace. Two short walks will be better than one longer one, or make sure you have several rests on a longer one. Similarly a 15 minute gentle movement routine could be broken into 3 x 5 minute parts. Or focus on complete relaxation between every stretch of a gentle yoga routine.
  • Avoid exercises that repeatedly move the same muscles. The best exercise flows between muscle groups (e.g. T’ai chi)
  • Focus on mobility as opposed to stamina.
  • Minimise exercise on days when other demands on your energy are higher than usual, but try to include some low-energy movement.
  • Always be flexible about any exercise plan and listen to your body. Avoid planning to do particular things on particular days without being willing to adapt to your daily fluctuations in ability.
  • Your fluctuating hormone levels (bio-rhythms) will mean that energy is more easily accessible at certain times of the day so look out for the particular times of the day when exercise/movement seems easier.

Do you have any more tips for exercising safely?



2 thoughts on “ME/CFS and Movement/Exercise”

  1. Hi just discovered your blog and its really inspiring. sorry to hear you are unwell again but it sounds like you are managing the illness well and have a very positive outlook. I’ve been unwell for nearly eleven years but have found as the years go on, that I’m improving and I now consider my symptoms to be mild. I’ve been going to an ME specific yoga class and enjoying it, with no ill effects. I can hear myself thinking that maybe I could try and push it to a ‘normal’ class now (I never learn ha ha!) but with everything else I have going on I know its enough. I still feel a sense of loss when I hear about other people doing 10k’s or climbing mountains but maybe it will still be me one day…

  2. Hi, Thank you for commenting. I’m glad to hear that you have been improving over the years even if its still frustrating that you can’t climb a mountain yet. I have to admit that sometimes I do give into the temptation of overdoing it at my yoga class but its never worth it! Its not a specialist class but my teacher is really understanding. Last week I told her I’d been doing too much and so she constantly reminded us to stay with what was right for us!

    I’d love to hear from you again any time you feel inspired to share the things that have helped you improve over the years!

    Best wishes!


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