Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

[Trish]

A small thing but I wanted to just point out that IIRC in the PACE trial they called it Adaptive Pacing Therapy, not just Adaptive Pacing - thus APT, CBT, GET

Thanks, you're right, I'll correct my post.

 

[Trish]

Regarding pacing for pain, FM throws that concept out hard on its tush.

One or two arm movements can evoke a 10-day bout of increased local and body-wide pain (from a 5/10 baseline level of pain to an intolerable 7-8/10).

FM pain generation has its particular rules base which take self-discipline to stick to--each and every task using muscles in the FM-affected regions must be thoroughly consequenced, thought through and the task often dropped, if it's not an emergency.

I don't like the word "pace" in any form, because it has the connotation of marking steps in time, as though there is a miraculous progression upward and toward improvement, as though a religious effort. That there is something fundamentally wrong with you the way you just are with your illness.

FM changes how the brain responds to stress (think national and world politics, family stress, sensory, identity and self-esteem, social and role stress, life events).

Pacing: this changed brain and painful state is all reduced to the mechanics of do more A and you will feel better (B). FM doesn't conform to this concept.

Their logic of "pacing" comes from lived human experience---theirs. The human mind's propensity to quickly stereotype everything into manageable categories doesn't help us.

Thank you, I'm glad you responded. I suspected the version of pacing for pain was equally invalid for FM and other pain conditions as it is for ME/CFS.

In fact I can't imagine it being useful for anyone except someone who has had to reduce activity temporarily for something like a broken bone, who now needs to start being active again. Even there the whole rehabilitation industry seems to have decided everyone needs a program supervised by a physio, rather than being told to just resume their normal activities at a rate they can manage.

 

[Kitty]

rather than being told to just resume their normal activities at a rate they can manage.

...which they don't need a qualified health professional to tell them anyway. In fact, beyond initial advice about what PEM is and how and why to avoid it whenever possible, none of this needs their input.

Which I suspect is what the said rehab industry is worried about.

 

[Trish]

I like the term rationing.

What term do diabetics use to indicate that they need to limit sugar and carb intake?

I like the parallel with diabetes dietary rationing because a diabetic can't increase their tolerance of sugar by gradually increasing their intake, just as we can't increase our tolerance of exertion or of sensory stimuli by gradually increasing exposure.

 

[MrMagoo]

Are you thinking we should get rid of the term pacing?

I've found people, incl. doctors make automatic assumptions about what I mean when I've said I'm "pacing". I saw someone online using the term "energy rationing" and have tried to use that instead of pacing because (1) I think it makes the person think "Ooh, that's a new term, must be a concept I don't know about and it's a gap in my knowledge base that I need to learn more about" - new vocab for something new to them - as well as (2) it being more accurate and getting away from the whole annoying focus on physical exercise where sensory, cognitive, social exertion etc are often forgotten about or mentioned in a tokenistic way.

After reading @Trish excellent overview, I think “pacing” needs replacing. It’s over. I’m not using that word again. What a muddle.

 

[MrMagoo]

I love rationing. In UK it has strong connotations of not being enough, meagre etc due to food rationing lasting so long after WWII. In the UK saying something is rationed really causes a “Sharp intake of breath” it’s not fun, it’s imposed on you, it’s hard to manage.

 

[JemPD]

I love rationing. In UK it has strong connotations of not being enough, meagre etc due to food rationing lasting so long after WWII. In the UK saying something is rationed really causes a “Sharp intake of breath” it’s not fun, it’s imposed on you, it’s hard to manage.

Yes funnily enough I used the word rationing recently & got an appropriate response & thought I might start using it instead of having to pace myself

 

[MrMagoo]

Yes funnily enough I used the word rationing recently & got an appropriate response & thought I might start using it instead of having to pace myself

Also colloquially I think of pacing having positive connotations - either doing a run, or boozing. It’s usually something enjoyable you will be doing for a long period “the Wedding is at 12 and they have the reception booked until 2am, so pace yourself at the bar!”

 

[Jesse]

The way I personally interpret pacing is closer to pacing your energy during physical effort (e.g. a race). There's a very flexible/adaptive nature to that which largely depends on feeling and prior experience. Which does seem to fit with ME/CFS and avoiding PEM. But I can see the problems associated with it.

Rationing feels more strict, planned and based on harder data. But it's more explicit about there being a shortage of available energy. It reminds me of the "spoons" analogy which I also like a lot.

 

[Trish]

The spoons analogy occurred to me too as a way some people illustrate our limitations. I don't personally like it, but I can see it can be useful for getting across to a child that their sick parent has limited capacity, which is how I think it started. There are others like a battery that goes flat quickly and recharges slowly and incompletely.

Maybe these are useful as quick ways to illustrate our limitations to others, but I don't think they are particularly useful in learning to manage life with ME/CFS for pwME or in medical care. The spoons one also doesn't convey the important message that you can't increase the number of spoons by choosing to add another spoon each week.