Re: Harmful Excercise
Posted: Fri Aug 16, 2013 8:19 am
Thanks for that Dr Miller.
If the aim of CBT & GET is to find a sustainable middle ground - which I think is what you've said, then - why doesn't APT (Adaptive Pacing Technique) also work the same? Doesn't it aim to do the same thing? That's what I don't understand about the PACE results - because the differences seemed pretty marginal to me?
Personally I'm not overly bothered by the minutiae of what has & hasn't been released yet, because as you say, it's not a 100% cure, it's the best we have so to me, at least, I'm reassured that properly applied CBT & GET shouldn't cause additional problems.
Though I am not at all convinced as to the availability of such properly applied CBT & GET - which for me is the elephant in the room - because that's the terrifying disconnect, the 'what if it's not properly applied' and 'how can I tell before it's too late and damages me' which I have a horrible feeling are the realities of what most ME/CFS people are likely to come up against. Do you or Jessica have any pointers as to HOW to tell whether or not what's being offered is the 'right' sort of CBT & GET?
*Edited to Add*: I've just gone back to another thread where Jessica suggested having a look at the PACE GET patient manual (there's also the therapist manual on that site) to see whether or not what's being offered is the same 'animal' as what the PACE Trial broadly found to be effective in some cases. But it's really really long and complicated to absorb. To qualify my question - are there any 'key features' that could summarise what a 'safe' GET programme looks like? and/or 'red flags' to look out for? *end edit*
This has added problems for those on benefits, because following 'medical advice' is part of the deal, but what if what's offered isn't 'safe' under the NICE Guidelines? Individual patients are unlikely to have the resources to deal with this?
*Edited to Add*: How can a patient who is offered GET (possibly as the only treatment available) that doesn't have the key features and/or has red flags negotiate it's application as per the PACE (or any other) 'safe' version, without jepordising their current/ future treatments & Benefits position? *end edit*
If the aim of CBT & GET is to find a sustainable middle ground - which I think is what you've said, then - why doesn't APT (Adaptive Pacing Technique) also work the same? Doesn't it aim to do the same thing? That's what I don't understand about the PACE results - because the differences seemed pretty marginal to me?
Personally I'm not overly bothered by the minutiae of what has & hasn't been released yet, because as you say, it's not a 100% cure, it's the best we have so to me, at least, I'm reassured that properly applied CBT & GET shouldn't cause additional problems.
Though I am not at all convinced as to the availability of such properly applied CBT & GET - which for me is the elephant in the room - because that's the terrifying disconnect, the 'what if it's not properly applied' and 'how can I tell before it's too late and damages me' which I have a horrible feeling are the realities of what most ME/CFS people are likely to come up against. Do you or Jessica have any pointers as to HOW to tell whether or not what's being offered is the 'right' sort of CBT & GET?
*Edited to Add*: I've just gone back to another thread where Jessica suggested having a look at the PACE GET patient manual (there's also the therapist manual on that site) to see whether or not what's being offered is the same 'animal' as what the PACE Trial broadly found to be effective in some cases. But it's really really long and complicated to absorb. To qualify my question - are there any 'key features' that could summarise what a 'safe' GET programme looks like? and/or 'red flags' to look out for? *end edit*
This has added problems for those on benefits, because following 'medical advice' is part of the deal, but what if what's offered isn't 'safe' under the NICE Guidelines? Individual patients are unlikely to have the resources to deal with this?
*Edited to Add*: How can a patient who is offered GET (possibly as the only treatment available) that doesn't have the key features and/or has red flags negotiate it's application as per the PACE (or any other) 'safe' version, without jepordising their current/ future treatments & Benefits position? *end edit*