Re-framing GET as pacing, or vice-versa

Its been a long time since I trained. I would imagine that if you complied with the GET programme, gradually increasing the duration of a low intensity cardiovascular activity until you reach the agreed goal (was it half an hour?), then yes it should show on a fitness test. Even if you didn't have any rest days.

 

That is exactly what I am saying. Improving fitness requires an increase in intensity - which is not required by the regime and thus many patients will avoid it.

Yes, the GET but not really GET study was conducted in Perth by Karen Wallman (and treated the same as the other GET trials in the Cochrane review....)

 

Where is the evidence that PWME dont already know their equilibrium point anyway to the extent that other people who don't have the condition can proclaim to have developed a therapy to teach them how to meet it?

Why would anyone with limited capacity to exert themselves exercise anyway when they need the exertion for basic activities of daily living. Is it just a nice thought experiment for therapists to do exercise tests void of including and measuring the impact on ADL.

Now that I am not working I need to stagger around the house getting to the toilet, getting food, do some family stuff, go food shopping etc just to survive.

Should I get a GET therapist and help them to fulfill their intellectual masturbation exercise who can walk me up and down a corridor with an acotometer week by week adding on four steps or taking off two, for what bloody purpose? Will it get my food shopping done and get me fed bathed and clothed or am I supposed to give those things up so I can "exercise".

Oh look here's an example of this kind of therapist below, almost a blue cardigan too!!.....

https://www.youtube.com/watch?v=Nv7qh_XL_yM

 

exactly patronising b*stards, they really do think we are stupid.


Very funny clip @large donner

 

Here is the clinic I attended and link to the resources on their web page.

There is considerably more here than when I attended but you can see all the leaflets at the bottom. I will try and spend some time pulling together some examples if anyone thinks it useful?

http://www.cpft.nhs.uk/services/chronic-fatigue-syndrome-and-myalgic-encephalomyelitis.htm

 

'Mild' here. And yet it moves.

 

I read one of these carefully all the way through and got the absolute chills. I probably had an especially heinous one, but I could hardly believe my eyes; I felt like I was in a 1984-esque dystopia. The phrase 'trigger warning' applies.

 

I think the day may come when this type if evidence proves useful.

 

@NelliePledge thanks for that link it's useful....

In the managing stress section

Unless of course we're saying no to CBT or that we need to stop rather than pushing on with your shitty advice

Unless its the schedule of GET you've set for us

Except of course for the fact that we at the clinic are much better qualified to know your limits than you... so you do need to feel guilty when you rest when we've said you should be exercising, because thats lazy/avoidant/phobic... but not when you think you should be doing things you need to give yourself permission to stop.

So it's all about 'be gentle with yourself, know your limits & give yourself permission to stop'... but only under our watchful eye.... dont think for yourself, take our view of reality and give yourself permission to stop when we say you should. We'll tell you when you've hit your limit.


I wonder if they are consciously aware that this kind of making it impossible to 'get it right', - no matter what you do, you will be doing it wrong because they are the arbiters & their opinion is basically whichever thing you're doing it will be the wrong thing, the wrong way around....
this is precisely, precisely how domestic abusers behave. It's a classic controller/abuser MO.

Advice for sleep

They really do think we are utter imbeciles! I mean really, if i cant sleep because my neck's at the wrong angle... i'd never think to maybe use an extra pillow... because i really am that stupid! My 5yr old niece knows you cant sleep if you're not comfy.

And in the activity mgmnt section educating people to think about & write down all the details of the goal 'i want to visit a friend'.... so you need to 'think about how you're going to get there'.... I mean really? do you??!!! I'd never have known that..... of course if I wanted to go somewhere, without the help of this guide it would never occur to me to think about how i was going to get there! I mean i just expect to click my heels & miraculously transport like William ruddy Shatner!

FGS

I dont condone verbal abuse or violence of any description, but i really do wonder that ill people, in a lot of pain, do not simply lose their rags and explode. No wonder patients have gotten a rep for being hostile. I wouldnt patronise my 8yr old nephew like that, even he could tell you that in order to get somewhere you have to consider the best way to get there.

 

And sadly , if your 8 year old nephew was affected , it would be a different set of guidance that would apply..

 

Nellie pledge it might be worth googling other m e charities there could already be a good information pamphlet on proper pacing possibly with heart rate monitoring already published . it would save you from the constant anger at their ridiculous jobsworth attitudes to people with complex illnesses ,

 

Well yes, my thoughts exactly. But @Snow Leopard thinks that people could significantly increase their activity capacity without it showing up as improvement on a fitness test, because there were insufficient increases in exercise intensity (the focus was on exercise duration).

 

A lot of patronising nonsense. I went to a similar clinic and one of the most ridiculous 'suggestions' was to give yourself a small reward for job well done when achieving a goal. Examples of rewards included "an apple", "fruit juice" or "put 10 pence in a jar".

Who "rewards" themselves with 10 pence these days??? It is very hard to take anything they say seriously.

 

A f***ing apple! What are we, medieval peasants?

"Oh what a delightful indulgence this apple is, and such a change from my regular diet of posset and gruel!"

 

Isn't there something wrong about the symbolism of the apple? Once people have eaten of the tree of knowledge, should they not be cast out of the paradise which is their CFS clinic?