We are a group of patients who have serious concerns about the use of graded exercise therapy for the treatment of people with ME.
Patient surveys report serious harm from graded exercise therapy in ME. We have also heard from friends that they have been permanently harmed by graded exercise therapy: that they have not recovered even years later.
We feel that graded exercise therapy is a risky treatment option for ME. We are further concerned that trials for this therapy are ongoing, and that the therapy is now being trialed on children. This site and the petitions linked on it are a result of our concerns about the inappropriate use of graded exercise therapy as a treatment option for ME.
Why this campaign really matters to us
“I was lucky and didn’t get ME until I was in my twenties. I’d been able to finish my education and start my life. I can’t imagine how awful it must be to have this terrible disease as a child – and can’t imagine what it would be like to have people telling me that if only I became a bit more active, it would help me to get better – especially if my parents bought into it.
But I can imagine how hard I’d try to get well and how hard I’d try to please my parents. And I’d have made myself worse and worse until it was too late – and I’d have blamed myself for doing it wrong. Because I’d have been a kid, and I wouldn’t have known any better.
It’s up to us adults to make this right, and that’s why I’ve helped with this campaign. Graded exercise is a travesty of a treatment and we’ve got to protect these children.”
“7th July 2016, my partner and I are drinking our morning coffee and reading our devices in bed. I come across the ME Association’s tweet that a “Bristol group publish protocol for study of Graded Exercise Therapy in children and young people with ME/CFS”. I feel shocked, almost winded when I read about it. It is widely reported that graded exercise causes relapses. My sister had ME as a child and I imagine the horror of her being pushed to increase exercise to a schedule, without the agency we have as adults to fully consent.
My partner and I are Bristol graduates, fairly recently my partner worked there. For this to be coming out of the University of Bristol feels more personal. My partner says “You have to do something to stop it. You can’t just moan and let it go on”. All day I can’t get the Manic Street Preachers’ song ‘If you tolerate this, then your children will be next’ out of my head.
Graded exercise is not a treatment for ME. It is an anti-treatment. It must be stopped.”
“The idea that ill children could be forced to exercise while being told that their illness is imaginary — and that if only they would trust their doctors and push themselves to collapse they would become well — is something out of a dystopian novel. Worse yet is that parents are being misled about the miraculous healing powers of exercise and talk therapy in what modern biomedical research shows to be a cellular energy disorder. That the UK government endorses this treatment of children is a national disgrace.”
“Why would anyone suggest children with ME should do Graded Exercise Therapy? It doesn’t seem to help adults much, and in my experience any form of exercise has always made my condition worse.
I was in my late forties when ME stole my active life. I had always kept myself fit and active, so I was devastated when suddenly my body couldn’t recover from an unrelated minor health issue. My doctor did all the standard tests, found nothing abnormal, and advised me to get out and walk myself better. Sadly that advice caused my condition to rapidly deteriorate.
I later learned from patient groups that exercise is the worst thing possible for ME. In fact, these patients explained, any exertion is damaging to people with ME.
Once I knew this I stopped pushing myself, and started to carefully pace all my activities. At once my rapid health decline slowed and I regained some stability. So it beats me how any therapy with the word “exercise” in it could be useful. My own experiences tell me this is harmful.
And people want to try this on children with ME?
The MAGENTA study looking at Graded Exercise Therapy for children seems to be a disaster in the making. How many children will be harmed when they are encouraged to exercise with a condition that is made worse with any exertion?“