Proposed new training module for Australia: CBT and GET

[alex3619]

If the intention was to demonstrate harm from GET, this would have to be clearly explained in the outline

I doubt it, as that would invalidate the study due to creating bias. Research in this area is tricky. Its already been discussed by someone at Workwell that running a GET study could be unethical, so they wont do it. The evidence that it is harmful is already clear. Its researchers who lack a grasp of the scientific and ethical issues, for the most part, who propose these studies.

 

[alex3619]

I think there was a study that showed this using actometers. They did the exercise but total activity declined.

they replace activities of daily living with the exercise program and believe they've improved when they really haven't made any change.

 

[taniaaust1]

A point of clarification: Emerge covers 3 states in Australia (Vic, Tas & NT), though it does have members from other states. Emerge wasn't ever called ME/CFS Australia, that was the name of the now defunct national body (we currently have no national body). Emerge used to be called ME/CFS Vic/Tas/NT, but rebranded as Emerge Australia a few years ago with the intention of becoming a national society, and taking on a stronger lobbying role, though those plans have been hampered by funding cuts.

A very Wessely school sounding article by Lloyd was once in the Emerge journal, I stopped getting it at that point as I found it very offensive to me and all ME patients and was very glad when the Sth Australian ME/CFS society went back to doing their own ME/CFS journal.

The issue is here that the Emerge group (which is I think the victorian ME/CFS association group) is more active political I think and trying to change things then the SA ME/CFS group where as unfortunately the SA group can offer very little in support to its members "we need to wait till things change" as everyone there running it is just too sick to do actively doing things... so it makes me as a very sick ME person want to turn to the Emerge group for help advice.

The Emerge group would like to link with the SA group but the SA group seem to be against this (is it due to the reasons I mentioned before? if so I can completely understand that from what Ive seen in the past and who they support. Severe ME patients do not want their associations appearing supportive of those who believe that GET or CBT really treat this).
.....

In case anyone doesnt know. Wessely and Lloyd know each other well as they have even published together in at least one journal eg Aust NZ Journal of Psychology "What is chronic fatigue syndrome? Heterogencity within an international multicentre study" in 2001.

 

[JaimeS]

Still no form letter... if anyone wants to give it a go

 

[GreyOwl]

Still no form letter... if anyone wants to give it a go

I will send you mine in about 6 hours @JaimeS

 

[JaimeS]

I've tried to make it a wee bit shorter, given our ME/CFS brain fog, but the structure is great, and all the links you've added are awesome! Thanks so much for putting it together!

 

[BurnA]

I've tried to make it a wee bit shorter, given our ME/CFS brain fog, but the structure is great, and all the links you've added are awesome! Thanks so much for putting it together!

I feel it is only relevant to link to this :

http://www.meaction.net/2016/04/29/tell-unsw-to-cancel-physician-training-in-get-and-cbt/

Well done @JaimeS and @GreyOwl and all who helped.

All emails sent!

 

[JaimeS]

Thank you, @BurnA ! This one was a real group effort; we had an anonymous author helping out as well.

WordPress is set up to only acknowledge one author the way we have it now, I believe. I want to change that, because that one really was a labor of love from a bunch of people!

Jaime