AfME Board of Trustees statement on CBT, GET and PACE - 16th May 2017

[Solstice]

Been reading back a bit but i'm starting to think it's best just to ignore people like Glen etc. instead of going to go into a discussion where he's never gonna concede and instead get's an opportunity to spread more ignorance.

 

[user9876]

I have seen, with my own eyes, hospital notes recording a very influential CFS paediatrician’s advice that neither tube feeding nor paralysis are consistent with a diagnosis of severe CFS/ME.

I've also seen her (I assume its the same one!) say that a patient is reporting symptoms of paralysis when they lack the energy to move and where the patient says no its not paralysis! But that was an excuse for claiming a disociative disorder - but then she admits the thought that on reviewing note prior to appointment. Basically don't stay ill/get worse.

Equally I've been told that tube feeding can only be done as an in patient on a psych ward but that was a different doctor.

 

[slysaint]

I've also seen her (I assume its the same one!) say that a patient is reporting symptoms of paralysis when they lack the energy to move and where the patient says no its not paralysis! But that was an excuse for claiming a disociative disorder - but then she admits the thought that on reviewing note prior to appointment. Basically don't stay ill/get worse.

Equally I've been told that tube feeding can only be done as an in patient on a psych ward but that was a different doctor.

Please note that quote was not from me but taken from an article whose link I posted in my thread.

 

[JaimeS]

I have seen, with my own eyes, hospital notes recording a very influential CFS paediatrician’s advice that neither tube feeding nor paralysis are consistent with a diagnosis of severe CFS/ME.

Wtffffff what is wrong with people?

 

[slysaint]

I have started going thro my pile of 'Interaction' magazines (AfME) to try and find what and when members were told about PACE (I don't remember ever hearing about it). I should add that I stopped being a member of AfME about 9 years ago and had not followed anything in the ME world until I joined PR a couple of years ago.

Anyway, I found one paragraph from May 2004:
"......Meanwhile, researchers are busy preparing the MRC-funded trials PACE and FINE."
Followed by a short description of FINE, and a link to the mrc website.


Then in Aug 2004 this:

I never thought about it before, but by calling it PACE was a deception in itself as members who didn't look into the detail could easily have assumed it was about pacing.

 

[slysaint]

From the same magazine, (same as first quote above) was a 4 page article on CBT (Including Hazel O'Dowd).
The bottom line was (as they persist in saying) that adverse reactions to both CBT and GET was down to it being inappropriately applied (ie more training needed to do it 'right').

I had almost forgotten how many adverts for woo and quackery there were!!

Here's a good example:

note: you got a discount if you mentioned Interaction...............so much for the AfME line 'we do not endorse any of these treatments'........

 

[Large Donner]

Can I get a refund even without buying the book just because I know it exists.