Re-framing GET as pacing, or vice-versa

[Woolie]

Since you were a fitness instructor, what do you say?

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.

 

[Snow Leopard]

I don't understand this. Are you saying that people could have done genuine GET (with its incremental element), been fully compliant with the regime and the incremental aspect, and still might not have shown an improvement in fitness after a year of that?

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.

In Australia, an exercise physiologist came to my talk in Perth and said she did "GET-with-pacing." When I looked at her published study, from late 90s, it was GET up to the point that patients experienced a setback. Then they were supposed to stay under that level and not push beyond anymore, as I understood it. So it was called GET but it seemed to me just increasing activity till the appropriate limit.

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....)

 

[large donner]

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!!.....

 

[NelliePledge]

hi all if you want to know what NHS clinics are currently doing and how pacing is getting appropriated into a bunch of BPS stuff here is a link to a guide published by one of the clinics in the east of England. This is basically an enhanced version of the manual I was given when I attended a different clinic's CFS/ME management programme 8 week group session - each week we covered a different topic

it is quite a lot of pages although because its designed to be printed out a lot of those can be scrolled through but you can see what it says about activity management/pacing - including the graph about activity levels. Also a section on negative thoughts and behaviours. It may not be full on PACE but as I said before it is PACE-light

https://www.ecch.org/media/16119/me-ot-pack-sept-2017.doc


so obviously there is a lot of stuff in here that is going to be making people angry be warned

 

[JemPD]

View attachment 3159

Make your own meme here: https://imgflip.com/memegenerator/Roll-Safe-Think-About-It

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


Very funny clip @large donner

 

[arewenearlythereyet]

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

 

[JaimeS]

The snag is the limit isn't fixed.

My being in a good phase, bad phase or in between dictates the limit.

Even the same, simple task on different days takes different amounts of energy. Much more of lower available energy levels on a bad day or in a worse phase.

It isn't static. Maybe this would be a appropriate for someone with mild ME, but not for the more severe, I think.

'Mild' here. And yet it moves.

 

[JaimeS]

so obviously there is a lot of stuff in here that is going to be making people angry be warned

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.

 

[Invisible Woman]

I will try and spend some time pulling together some examples if anyone thinks it useful?

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

 

[JemPD]

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

In the managing stress section

Communicate effectively. Be assertive about your needs, talk them through and learn to say no. Remember you have a choice about how to respond.

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

Do not feel guilty about what you can not do. Understand that if you could do it, you would. Do not feel guilty about delegating or not completing tasks as quickly as you might like

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

Recognise when you are tired and have reached your limits. Do not feel guilty when you need to rest but give yourself permission to do this.

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

Try to get as comfortable as possible i.e. with pillows.

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.

 

[Amw66]

@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..

 

[NelliePledge]

ok folks while we're doing this topic we might as well do it comprehensively. so looking at the NHS manual I posted above there was a mention of the AFME booklet on pacing so I decided to revisit it because the AFME website was one of the first resources I had around the time I was first diagnosed 2 1/2 years ago.

it was published in 2013 and I discover that it was written by people from NHS clinic and the AFME medical adviser Alistair Millar

it is toned down somewhat and doesnt strongly emphasise increasing activity in a graded way - increasing as able is the phrase used

when you actually look at the whole thing there's barely any difference from the NHS manual - I'll call it PACE -sugarfree

https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

I know quite a few folks have blogged about pacing and there are a lot of patient generated resources out there

Im wondering if theres any merit in working on a replacement PACE-less guide to directly supercede the NHS document which can be presented to NICE guideline development committee as genuinely based on patient experience. It could be quite hard to ignore and if they did recommend NHS adopt it it would be a good step in moving to sensible non-harmful non patronising sessions. in my job I would have been able to turn this round pretty quickly by a combination of editing whats there and cutting out and replacing the bad stuff. We all know it is not rocket science. If I pace it as in the dictionary definition of pacing yourself - doing a couple of pages a day i could have an initial version in a couple of months. Obviously I would do a better job on writing standards than when Im just writing informal posts like this. I dont want to do that if others don't see the point or if people feel it is useful but should be a group effort.

its just an idea I wouldnt choose to do this but it is something I can do a decent job on if it is potentially worth doing - any thoughts?

 

[alktipping]

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 ,

 

[Sean]

I am asking if he thinks no increased fitness after a year of duly-followed incremental aerobic activity is a reasonable expectation.

If it isn't for CFS or ME patients, then why did PACE use fitness tests? Or any objective tests of activity capacity?

Almost the only thing I agree with Wessely and Chalder about is that increasing activity capacity must be the ultimate goal of treatment. And that is objectively measurable in a number of ways.

https://www.ncbi.nlm.nih.gov/pubmed/2107860

 

[Woolie]

If it isn't for CFS or ME patients, then why did PACE use fitness tests? Or any objective tests of activity capacity?

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).

 

[LightHurtsME]

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

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.

 

[Woolie]

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!"

 

[Sean]

posset and gruel!

Looxury.

 

[Cheshire]

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".

When you confuse psychology with dog training...

 

[chrisb]

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?