Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

[adambeyoncelowe]

I see. I think that's the way to do it because from reading the comments it seems like patients were given very different treatments under the same name. Some people said CBT helped them to accept the illness while another said “CBT encouraged me to stop thinking of myself as having ME and a serious illness. They said everyone felt tired sometimes and did not accept ME." That's as contrary as can be.

I remember from the 2015 ME Association survey that there was someone who explained why he/she found pacing unhelpful and the description seemed more like GET. Others who liked GET said it was helpful for finding their baseline so they stopped crashing etc. So that seems more like pacing. Perhaps if we were to ditch the labels and describe the treatments themselves, we would see even larger differences between what patients find helpful or harmful.

What I meant with, the survey does not mention GET, is that I couldn't find something to compare with the results of previous surveys where approximately 50% found GET unhelpful or harmful. The survey asks about advice on activity management, but GET normally involves intense guidance of a healthcare professional. On the other hand the comparison between the initial advice to rest/adjust activity versus maintain/increasing activity is probably more interesting because the results are more difficult to explain away as selection bias.

Gotcha! Thanks for the clarification.

 

[rvallee]

I see. I think that's the way to do it because from reading the comments it seems like patients were given very different treatments under the same name. Some people said CBT helped them to accept the illness while another said “CBT encouraged me to stop thinking of myself as having ME and a serious illness. They said everyone felt tired sometimes and did not accept ME." That's as contrary as can be.

I remember from the 2015 ME Association survey that there was someone who explained why he/she found pacing unhelpful and the description seemed more like GET. Others who liked GET said it was helpful for finding their baseline so they stopped crashing etc. So that seems more like pacing. Perhaps if we were to ditch the labels and describe the treatments themselves, we would see even larger differences between what patients find helpful or harmful.

What I meant with, the survey does not mention GET, is that I couldn't find something to compare with the results of previous surveys where approximately 50% found GET unhelpful or harmful. The survey asks about advice on activity management, but GET normally involves intense guidance of a healthcare professional. On the other hand the comparison between the initial advice to rest/adjust activity versus maintain/increasing activity is probably more interesting because the results are more difficult to explain away as selection bias.

That problem will only get worse as we noticed that some clinics are using GET and calling it pacing. I doubt this is entirely new so there's probably a bit of confusion already about exact nomenclature. And some various uses of graded activity, not clear how different it is, adaptive pacing, etc.

So many problems with this disease are over basic words that have precise common meaning but have been repurposed to mean something else. Hell, even chronic is misused, as it only applies to lifelong incurable diseases yet the very people who insist on calling it chronic fatigue insist it is temporary. What a mess.