"It ain't what you do, it's the way that you do it..."
I’ve been a bit saddened by the response of some of the ME/CFS groups to the current NHS guidelines for the treatment of ME. ‘Mutiny by ME sufferers’ is how Tom Whipple, science editor of The Times describes it.
So what is going on? (And please remember I’m someone who was diagnosed with severe ME, spent most of 9 years in a wheelchair or bed, and was hospitalised twice)
There has long been concern by those with a diagnosis of ME that there is nothing ‘physically’ wrong with them, and such concerns have lead to resistance to any intervention which suggests that this might be the case. Graded exercise therapy is one of those areas of concern.
During my first hospital stay I was put on gentle graded exercise therapy. There were some benefits…and some areas of disaster, notably having my legs strapped into a machine that made them move at a speed and distance far beyond my cardio-vascular fitness at the time.
And yet, eventually, I got better dramatically quickly. Far quicker than the graded exercise therapy I’d be prescribed.
As I work to help people recover from ME and other functional somatic syndromes as part of the Reclaim Health team, I’ve come to realise the truth of the song:
“It ain’t what you do, it’s the way that you do it”
In other words, if I believe exercise is going to hurt or damage me, if I don’t prepare my body to move with ease rather than stress before I exercise, if I don’t expect some feeling response to more exercise and am ok with that…then graded exercise can feel like walking on a broken leg. The way that we do exercise can determine the outcome we experience.
If we can learn to do exercise differently - and I know that is possible because of my own experience and my experience of working with many, many clients - then the next line of the song becomes true:
“…AND THAT’S WHAT GETS RESULTS.”