What is Action for ME's current (March 2018) position on the PACE trial?

[Graham]

Their statement is basically trying to play both sides.

Don't fret, Alvin: I didn't take it that way. My pleasure is that they are starting to respond, rather than stonewalling. They still have a long way to go, but they is "establishment" at their core, so this is a big step for them.

I have come across a number of patients who have found CBT useful. BUT it is the supportive CBT that other chronic conditions experience, not the "curative" CBT that is pushed our way. Once again, as with the term CFS, those who support the psychological interpretation of ME muddy the waters by pinching terms and using them for very different purposes.

 

[Alvin]

Don't fret, Alvin: I didn't take it that way. My pleasure is that they are starting to respond, rather than stonewalling. They still have a long way to go, but they is "establishment" at their core, so this is a big step for them.

Fair enough, but its very little very late.

I have come across a number of patients who have found CBT useful. BUT it is the supportive CBT that other chronic conditions experience, not the "curative" CBT that is pushed our way. Once again, as with the term CFS, those who support the psychological interpretation of ME muddy the waters by pinching terms and using them for very different purposes.

I assume when we speak of CBT/GET its the deny you have an illness version.

 

[chrisb]

There is only one problem with the deconditioning model. It is wholly incompatible with the evidence.

How can it be that when you have a relapse and spend days in bed or sofa-bound strength gradually returns? When you are strongest it dissipates.

 

[adambeyoncelowe]

I would suggest it should follow what Wessely himself says in 1989:

However, the available evidence indicates that reconditioning is not actually a significant problem inME/CFS.

Indeed. Hoist 'em by their own petard!

 

[Trish]

I would suggest it should follow what Wessely himself says in 1989:

However, the available evidence indicates that reconditioning is not actually a significant problem inME/CFS.

Did you mean deconditioning?

 

[Sly Saint]

To coin a phrase used by MS a lot recently;
Did AfME get anyone who had any kind of understanding about RCTs to actually read the PACE trial and its results when it was first published?
Surely as the trials 'patient organisation backer' it had some grounds back then to get permission for a couple of reliable/unbiased people, who knew about these things, to have access to the data?
Why didn't they (AfME) do something sooner rather than leave it to a patient in Australia to finally get the PACE authors to release some of the data?
I know AfME 'signed a letter' about the release of the data but again, it was all too little too late.