Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy

I'm actually pleasantly surprised by this. As you say @Trish it's not perfect, but for them it seems quite a step.... it doesn't pander to the BPSers nearly as much, in fact the comment about PACE is jolly critical in comparison with their historic stance. And respectful or her to go to the trouble of actually doing a table of 'you said/we did' for you. All in all much better than i was expecting.

Well done Trish, great to see they used some of your language. Your efforts have had a real, positive impact there, & i'm sure it will make a difference especially to the newly diagnosed & vulnerable. Nice one!

 

Very good step in the right direction - encouraging. Well done @Trish ... and @Action for M.E.

Various things still need sorting, but a crucial thing thing for me that is still ignored (but is in the letter): No one (in the world!) knows who will be harmed by GET until it is too late, and they have already been harmed; there is currently no other way of an individual finding out!

And GET positively encourages / coerces patients to push into the danger zone, whilst convincing them it is for their own good. Akin to encouraging healthy people to run a cross-country race, without telling them the route crosses a live minefield.

And I'm still not happy with telling patients it is their right to not do what they don't feel happy with, because it is close to telling them it is their responsibility if goes wrong. No. People have to be made aware that, just like the minefield, a high percentage of those undertaking GET will be harmed, and that nobody can know beforehand who those people will be.

But Action for M.E. have taken a significant step in the right direction here, and that is good to see.

 

I note a point I haven't often seen. It is not needed at all to go to third parties to rubbish the claims of improvement.
Thread I created in another place. CBT/GET - in their own words.
"Table 6 ‘Table 6 Change in activities and health across CFS/ME specialist services at 2- to 5-year follow-up’ reveals that 2-5 years after treatment in no category that involves going out of the house, is the number of patients improving outweighed by those that got worse. Only 5.7% of patients answer ‘I no longer believe I have CFS/ME’."