Pacing and pace up

Martine

Martine

Established Member (Voting Rights)
Hello all,
I am curious - what terms are being used to label 'symptom-contingent graded exercise therapy (and symptom-contingent graded activity therapy)' in French speaking regions that hides the GET and GAT?
For what I know, we use pacing in french, but I never heard of pace up...
 
In my experience, they keep changing the names. Some even call gradually increasing activity ‘pacing’.

So the name doesn’t really matter, it’s the content that makes it pacing up. It’s unfortunate for us because it means that we have to dig for the meaning every time..
 
Martine said:
For what I know, we use pacing in french, but I never heard of pace up...
Click to expand...
“pacing” as defined by pretty much every doctor I’ve seen in french-speaking Switzerland who’d heard of the term meant “pacing up” to them.

“Oui, pacing ça veut dire lentement revenir à un taux d’activité normal, marcher de plus en plus loin, reprendre le travail petit a petit. Evidamment çe n’est pas utiliser une chaise roulante et rester allongé, comme vous le faites”.

(in English for those curious:
Yes, pacing means slowly returning to a normal level of activity, walking farther and farther, gradually going back to work. Obviously, it doesn’t mean using a wheelchair and staying lying down, like you do)

This is a re transcription of something I was told by a specialist I was referred to by the local long COVID clinic, who is a “long COVID researcher”.
 
Martine said:
Hello all,
I am curious - what terms are being used to label 'symptom-contingent graded exercise therapy (and symptom-contingent graded activity therapy)' in French speaking regions that hides the GET and GAT?
For what I know, we use pacing in french, but I never heard of pace up...
Click to expand...
Have you seen this thread?

https://www.s4me.info/threads/pacing-up-why-its-as-harmful-and-unevidenced-as-get.42006/

The therapist to whom I was trying to explain why pacing up is not suitable for people with ME/CFS doesn't get it, claiming to know how to do pacing up safely and how to know for which pwME it is suitable and safe.

The very problematic British organisation of therapists who run UK ME/CFS clinics working on a rehabilitation model with lots of unevidenced claims say this:

"BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline."
https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf

That's pacing up and has great potential for harm as I explain on the other thread.
 
Jonathan Edwards said:
My impression was that 'pacing up' was not a term used by people doing the pacing up but by their critics. The people doing it will call it pacing or activity management.
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Not from a French-speaking region, but evidence that 'pacing up' is a term very much used by therapists, notably Peter Gladwell:

Bristol ME Service - Foundation Phase Online Course
Many people have setbacks, when their symptoms get worse for a period of time. We advise people to ‘pace down’ during these times, and work to a lower baseline. People can then gradually ‘pace up’ again as they recover from the setback. This is like moving up through the gears of a car, rather than jumping straight into fourth gear on the first good day after a setback. We have a separate information sheet about managing setbacks.

Over a period of time, when you can consistently manage your baseline level you may find you feel you can manage a bit more and can consider trying a small increase. This is sometimes called ‘pacing up’. Your clinician can support you with ‘pacing up’ activities if you’d like to try this approach.
Click to expand...

Although, for sure, many therapists call GET/pacing up "pacing". Perhaps "pacing up" is a term popularised by Gladwell.
 
Many people have setbacks, when their symptoms get worse for a period of time. We advise people to ‘pace down’ during these times, and work to a lower baseline. People can then gradually ‘pace up’ again as they recover from the setback.

I am not sure that is 'pacing up'. It sounds more like sensible pacing in the context of a changing baseline. The suggestion that people can pace up 'as they recover' - i.e. when they are better, which sounds the sensible policy to me.

I don't think this would be consistent with Gladwell saying - 'we use the pacing up approach'.
 
Jonathan Edwards said:
Many people have setbacks, when their symptoms get worse for a period of time. We advise people to ‘pace down’ during these times, and work to a lower baseline. People can then gradually ‘pace up’ again as they recover from the setback.

I am not sure that is 'pacing up'. It sounds more like sensible pacing in the context of a changing baseline. The suggestion that people can pace up 'as they recover' - i.e. when they are better, which sounds the sensible policy to me.

I don't think this would be consistent with Gladwell saying - 'we use the pacing up approach'.
Click to expand...
This.

The key is the order:
  1. Did you improve before you increased your activity?
  2. Or did you increase your activity to create an improvement?
1 is pacing. 2 is pacing up and very dangerous.
 
The problem with pacing up as applied by at least some BACME members in UK clinics is it isn't just the sensible doing a bit more when your health has improved, either after a temporary setback of PEM or as a gradual process over time. If that were the case, it would be simply pacing to stay within the baseline limit, which the pwME will adapt naturally as their capacity changes.

What pacing up proponents do is go one step further. They get people to estabilsh a baseline, and then try to stretch it with gradual increases in activity. For example, one of the therapists who wrote that BACME position paper told me to write down my activities for a week, and then the next week said 'what activity are you going to add this week?'. In other words, the principle is like the therapy principle for phobias of gradual exposure to the 'feared' thing.

The therapist I tried to explain the problems with this approach told me they had learned it from a 'wise therapist' in their early years of practice, and that it is very successful for people with pain and fatigue. They didn't seem to understand that PEM in ME/CFS makes that approach potentially harmful.
 
Trish said:
Have you seen this thread?

https://www.s4me.info/threads/pacing-up-why-its-as-harmful-and-unevidenced-as-get.42006/

The therapist to whom I was trying to explain why pacing up is not suitable for people with ME/CFS doesn't get it, claiming to know how to do pacing up safely and how to know for which pwME it is suitable and safe.

The very problematic British organisation of therapists who run UK ME/CFS clinics working on a rehabilitation model with lots of unevidenced claims say this:

"BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline."
https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf

That's pacing up and has great potential for harm as I explain on the other thread.
Click to expand...

Thanks, yes, i saw it, but i did not have the chance to read it yet. I was asking because i am doing the french translation of the fact sheet 1 and i want to make sure i am using the right expression!
 
Trish said:
The problem with pacing up as applied by at least some BACME members in UK clinics is it isn't just the sensible doing a bit more when your health has improved, either after a temporary setback of PEM or as a gradual process over time. If that were the case, it would be simply pacing to stay within the baseline limit, which the pwME will adapt naturally as their capacity changes.

What pacing up proponents do is go one step further. They get people to estabilsh a baseline, and then try to stretch it with gradual increases in activity. For example, one of the therapists who wrote that BACME position paper told me to write down my activities for a week, and then the next week said 'what activity are you going to add this week?'. In other words, the principle is like the therapy principle for phobias of gradual exposure to the 'feared' thing.

The therapist I tried to explain the problems with this approach told me they had learned it from a 'wise therapist' in their early years of practice, and that it is very successful for people with pain and fatigue. They didn't seem to understand that PEM in ME/CFS makes that approach potentially harmful.
Click to expand...

Do people actually have a baseline that is consistently the same every day?
 
Early on with Long Covid we had a discussion on Twitter with a few francophone professionals and we couldn't really come up with a good term for pacing. Some French descriptions simply adopt pacing directly.

Pacing up is as contradictory as going down upstairs, and would probably only translate as accélérer/accelerate, defeating the entire purpose. Which is the whole purpose! The ideologues have simply decided over the years to subsume our terminology, make it so ambiguous that it can mean either, thus making it easy to push GET while the patient thinks they are doing the opposite. It's very dishonest, but that is what they do.
 
rvallee said:
Early on with Long Covid we had a discussion on Twitter with a few francophone professionals and we couldn't really come up with a good term for pacing. Some French descriptions simply adopt pacing directly.

Pacing up is as contradictory as going down upstairs, and would probably only translate as accélérer/accelerate, defeating the entire purpose. Which is the whole purpose! The ideologues have simply decided over the years to subsume our terminology, make it so ambiguous that it can mean either, thus making it easy to push GET while the patient thinks they are doing the opposite. It's very dishonest, but that is what they do.
Click to expand...
I opt to put a definition : l’augmentation progressive planifiée des activités pour étendre les limites énergétiques. I hope it represent well what pacing up mean.
 
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