We hear many horror stories about graded exercise therapy, but not every story of advice to exercise with ME ends in a dramatic worsening of symptoms. Often people realise more simply that it is not providing benefit, but using up precious energy. Laura* describes this type of scenario:
My son Tom* was told to exercise by his consultant (paediatrician) when he was first ill, she assured us one of her other patients had done so and he was back to playing football. We weren’t given any advice or support for this, just told he should exercise. In retrospect this was a good thing, as my mother instincts kicked in and I didn’t push him to constantly increase.
He was more poorly than I realised at the time, and just adding a layer of clothing (it was winter and he was hypersensitive to cold for the first few years) was more than enough ‘exercise’, even before he walked up the street a bit (not far).
After a couple months of trying this it was clear he wasn’t improving, so we quietly let it slide into oblivion. At that point I began researching and realised graded exercise therapy was hugely controversial, and that guidelines were that he should have had support for it, which we didn’t — which was a hidden mercy as he wasn’t pushed.
So this isn’t a horror story, just that it was a waste of precious energy for him, and for me who had to make him do it, when he was quite unwilling and so poorly.
I would like to add another thought, that very few children exercise for the sake of it, mostly they are out and about being kids, or playing with friends, etc. To put them on an exercise programme just seems unnecessary and unnatural. Better for a parent to push them to the playground in the wheelchair (or drive them there) and let them enjoy playing and going on the slide or whatever, then push them home again. With what energy they have they need to be free to be kids. My kids learned their limits pretty quickly, didn’t need them imposed externally.
This is my basic problem with a formal graded exercise therapy programme for children; for adults it’s equally true, as they need to use precious resources for daily living before they begin to exercise.
Missing More is a series of posts sharing patient experiences of ME and exercise.
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*Names changed to protect the anonymity of a child