Pacing and pace up

I don't know what French speakers use for these but I suspect the situation is much the same as in English, any such terms are used almost at random to mean whatever the speaker wants it to mean. So writing a definition of proper ME-pacing is probably the best way around this, together with a mention of there being types of pacing that are inappropriate for pwME (pacing is a general term used in rehab for all sorts of conditions, and even there it's not used consistently, sometimes it means pacing to conserve energy and sometimes it means gradually increasing activity to regain some function)

To me "l’augmentation progressive planifiée des activités pour étendre les limites énergétiques" reads more as a description of GET because "planifiée" sounds more time- than symptom-contingent

For pacing up or symptom-contingent GET/GAT "l’augmentation progressive des activités pour étendre les limites énergétiques" would fit better as here increases are typically allowed to be made flexibly, the problem is that the goal of the exercise is to ultimately increase of the energy envelope which is not part of ME-pacing

 

I thought mostly the same. Until I had a period where I was so severe I lost 99.9% of communication ability or do anything but drink liquid food and daydream.

Then I really noticed how I had a baseline. Because since my daily schedule was exactly the same every single day I could see how I had this daily capacity that kept me stable, but if one day I had one more exertion — ie. an ambulance passed by, this baseline would completely change for atleast a week and what I could do in the day to trigger PEM would be less.

When it’s to the point that every moment of your day is repetitively coreographed. And you do basically nothing. It gets much easier to pinpoint the concept of a baseline and how it’s a pretty useful simplification for understanding the PEM producing aspect of the illness, atleast in my case.

(But also how fragile it is to fluctuate constantly and not really exist as a useful concept unless you really do extremely little in a very repeptitive routine)

 

I did not saw your answer before now... sorry, and thanks for writing it again in the other thread!

 

They do or did anyway, and introduced the term 'pacing up'.
"A physiotherapist’s view Pete Gladwell, Clinical Specialist Physiotherapist, says: “Pacing is about balancing physical and mental activities with rest. Effective pacing can provide more stability, control and sustainable levels of activity. This can also offer, if you choose, a firm foundation for ‘pacing up’."

although I see that AfME have removed the 2023 pacing leaflet this originally came from. More of the rebranding(?)

 

Interesting. So they invented pacing up and then realised that they had to deny that was what they were doing since 2020 when the writing showed up on the wall. So it has become a term used by others who suspect, with reason, that it is still going on?

 

Where is this quote from?

 

Would it be worth sticking with the English word “pacing” purely because it’s used in literature a lot?

 

No, Gladwell himself has defended the idea of pacing up in the government Delivery Plan meetings, it is very much a term that he uses.

 

See the second quote box in this post, https://www.s4me.info/threads/pacin...updated-january-2020.13320/page-7#post-549371

 

OK. Maybe Gladwell is the captain going down with the ship.

 

The Norwegian National Competency Service for CFS/ME currently recommends «graded activity exploration» (gradert aktivitetsutforskning), which is essentially pacing up.

 

Having increased my activity levels this week due to political and market instability inducing big stress on a family member. I was able to increase my activity as a counter-punch to the unbearable stress I was feeling, a type of distraction I was unable to resist.

I told myself this surge of energy was surely due to a natural seasonal burst of mammalian energy used for mating and nesting.

Then a few days later I had to pace the hell down.

What? 'Pace'..............? ! ?? !!?

Almost an evil word with connotations of walking in time to a metronome beat.

 

I wondered how far back the term "pacing up" actually went; there are surprisingly few papers that use the term. Back in 2006 O'Dowd, Gladwell & others published "Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme" (NIHR Health Technology Assessment 2006;10(37)) which contains this:

That's the earliest mention of "pacing up" that I've found. It seems to have been, until fairly recently (the AfME pacing guide was from 2022) a term used only by one or two authors.

 

How to speedrun a terrible PEM crash 101.

 

https://www.s4me.info/threads/pacin...updated-january-2020.13320/page-7#post-549371

eta:
did anyone keep a copy of the AfME pacing leaflet as discussed here, as it has been deleted.

 

Geez. Even Orwell would tell them to dial it down a bit because he can't compete with that.

 

They loved Wyller!