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Spoonseeker blog: Spotlight on GETSET Julie

Skycloud

Skycloud

Senior Member
Messages
508
Location
UK
@AndyPR - your blog post is great, btw. Forgot to say in my previous post.

hellytheelephant said:
GET SET HELLY
She is resting 7 days a week, walking to the toilet several times a day, attending breakfast ( in the front room), when she's up to it, and is going out hardly ever. She has spectacularly failed to

'valiantly adjust her daily activity to ‘stabilise’ her schedule so that she is doing a similar amount of activity every day',

because she's not a robot- she's a human being living in the real rather than virtual world....and she has a serious and debilitating illness so telling her to rejig her diary is about as helpful as telling her 'get out more'.
Click to expand...

@hellytheelephant - that's what makes you a real life Wonder Woman :hug: Unlike Prof. White's fantasy 'Julie'.


Years ago, when at my worst with this illness, I used to actually plan when to drink.

That meant I could plan going to the toilet less often. (Sliding, Crawling, lying on the tiled floor, you all know what I mean)

That was 'rejigging my diary' I suppose.


All of us have tales to tell and they are true and relevant. They are not fantasy like GETSET Julie and the 'curative fiction' of PACE from those people who don't listen to us.

GETSET Julie is such BS but to me she's the nearest thing to funny yet from the B(P)S bunch.

I'm imagining a GETSET Julie action figure.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Skycloud said:
@AndyPR - your blog post is great, btw. Forgot to say in my previous post.
Click to expand...
Thanks but I just shared it here, all praise and/or blame should go to Spoonseeker (who I tried to tag but there doesn't seem to be a user by that name now). I very much wish my brain fog would allow me to write at that length and so clearly.
 
Skycloud

Skycloud

Senior Member
Messages
508
Location
UK
AndyPR said:
Thanks but I just shared it here, all praise and/or blame should go to Spoonseeker (who I tried to tag but there doesn't seem to be a user by that name now). I very much wish my brain fog would allow me to write at that length and so clearly.
Click to expand...

@AndyPR Just looked back - sorry!! - And I very much wish my brain fog would allow me to understand properly what I've read. :bang-head: Thanks :)
 
Mithriel

Mithriel

Senior Member
Messages
690
Location
Scotland
I became ill on the 26th July 1968 and watching all this rubbish unfold has made me cynical. This research, like the PACE trial, has NO logic because it has nothing to do with science or the patients. They know that only the patients will pore over the details, anyone else will just skim the conclusions so they can write whatever nonsense they want. All that matters is that there is a citable publication in the Lancet that can be used to influence NICE and then they can roll out GET and CBT as a treatment. They set up programmes the insurance industry can use and the clinics which keeps them nicely employed. It doesn't matter if it doesn't work if there is a rationale that blames patients so they get no insurance money or benefits. If someone takes the insurance provider to court there are "scientific" papers published in good journals that prove their case so that is all that counts.

You can do what you like if there is no oversight. Luckily we are starting to be noticed by the greater scientific community, but it is all about power and exploitation.

Mithriel
 
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