Activity pacing: moving beyond taking breaks and slowing down (Antcliff et al. 2018)

Free full text: Activity pacing: moving beyond taking breaks & slowing down
https://link.springer.com/article/10.1007%2Fs11136-018-1794-7

It's interesting to see how "activity pacing" is now being defined by some in a way that could cause problems for some people with ME/CFS


https://twitter.com/TomKindlon/status/962472429078630401

 

So is Activity pacing the new GET?

I'm a bit disappointed that this doesn't have an acronym that encourages positive thinking.

I suppose they could call it AP therapy to make it sound high tech ?

Same old garbage. Do we really need someone to tell us how to make a short to do list so we can do more?

I'm so stupid ...I'm sat on my arse all day....and I could be running through the fields meeting all of life's challenges head on .... all I needed was some doctor to show me how to write a list! What A stupid idiot I am.

On what basis do these weasels assume that we aren't already doing this..arrogant little ..... (Insert profanity of your choosing )

 

I think this might be all very well where the condition is fairly stable. ME/CFS is not stable.

This smacks of Graded Activity Therapy to me and not suitable where even tiny increases in exertion make the condition worse. Most of us have really struggled because it took us too long to let go of the goal oriented approach. The antithesis of the approach needed by an ME/CFS patient IMO.

 

They're moving pacing beyond pacing.

 

Could someone please explain to these idiots the difference between pacing and acceleration? Their definition breaks all normal usage of the word pacing that I know of.

Well played.

For the more stubborn patients, they can adapt to 'Habituated Activity (Re)Pacing'.

 

They keep on changing the terminology to make it acceptable for patients. Hysterical became psychosomatic, then became ‘all in your head’ then became ‘it’s real but you need CBT’
Then CBT became self-management or ‘the good kind of CBT’.

It is convenient to keep on this slippery slope of terminology. As long as there are no approved biomarkers, no real interest from pharma, governments keep on getting away from dishing out serious money into a disease that seemingly is without consequence to them. That is until it happens to them or to their loved ones.

 

Picture a child. Frustrated at missing out on so much. Eager to catch up with peers. This is a potential recipe for disaster.

We don' t have specialists: paediatrician handed out Bath proformas and emphasised start small and build up.As did GP.

Unfortunately the websites i found on the back of this were the Bristol hospital site ( proformas and sleep advice!), and AYME ( which did have some good print off info to give to teachers). To " get better" , GETSET Julie is the role model ( even though technically she did not exist then)

Things like family get together s and cognitive tasks threw spanners in the works. For some reason children do not view cognitive function as activity.
It was the educational pressure , combined with lack of sleep that really made things worse.

The only place ( other than here and the other place) where i found good advice is Sarah Myhill' s book. It advises at the beginning - do nothing until you feel ok ( ie no PEM) doing nothing. Life gets in the way of this, and this is acknowledged. She then has stages of progression, with the last being HIIT in very short bursts. It is, on the whole, a good resource

 

I think there was a paper last year which also created a new terminology as an alternative approach to GET. The biggest problem was that they were claiming the usual safeguards used for GET (heart rate monitoring, done under professional supervision, etc) do not apply because their new form of GET is not called GET.

It's also about rebranding. Every patient who can google knows that GET is almost universally panned by patients, and it's pretty easy to see criticisms of GET research as well. So they're calling it pacing, and if patients bitch about their new therapy, it'll look like patients are saying real pacing is ineffective as well.

It's a travesty that quacks are being allowed to fiddle with terminology without any repurcussions, but no one seems to be interested in doing anything about it.

 

It looks like we've lost the word pacing ...perhaps we need something bulletproof that the patient community can get behind like

BP. Biological Pacing?

Or not psychological garbage pacing ..NPGP

 

No Increase Pacing (NIP) is our type of pacing.

The problem is always when the psycho-social folk start to push for increase. That word itself is where their "Pacing" ceases to be Pacing as patients talk about it.

 

Symptom-Limited Activity Pacing?

The awareness campaign could be "SLAP ME"

 

Changing the name of the therapy instead of accepting that it doesn't work. Reality is what you decide it is, right?

 

I thought we lost the word pacing with PACE.

All quite deliberately.

 

This is exactly my feeling. It is beyond patronising. It's in line with my main objection to the whole 'misinterpreting normal bodily sensation leads to aberrant illness beliefs' theory. - DO THEY THINK I'M F-ING THICK?! Do they think I cant tell the difference between the pain & tiredness one experiences after doing more than one is used to (as a healthy person) & the experience of having influenza?
Because of course in 30yrs i'd never taken on a gym membership after doing nothing for a yr. I'd never spent a summer predominantly sitting on my arse and then started a full time job standing for 12hrs a day, & arrived home to go straight to bed utterly knackered. I'd never had a bout of influenza, never had a serious infection. Of course in their world none of that had ever happened in my 30 odd yrs of life pre-illness!

Indeed, if their hypothesis of aberrant beliefs> fear/avoidance> deconditioning> misinterpretation of normal sensations, were true, then one might conclude that i have somehow become severely brain damaged. - Since the human brain is designed to compare everything with what it already has a 'pigeon hole' for, - to classify & recognise it by pattern recognition. Then if i really were suddenly unable to accurately compare & contrast current bodily sensation with previous experiences of being normally & appropriately exhausted/in pain, versus experiences of being ill, then clearly i am brain damaged.

The mere fact that we are turning up in droves saying "what we're experiencing is not normal, it doesnt match what we've experienced before when we've done too much, it matches our experiences of being ill in the past"... that should be proof ON ITS OWN that there is something wrong.
But they all think we are so stupid as to be impaired to the level of brain damage.
So if they cant find objective evidence of it, then it cant be their evidence gathering, their knowledge that is lacking, but we all must be either malingering or so intellectually challenged as to not be able to tell the difference... because they are sooooo much cleverer than we are.

I'm so sick of their medical paternalism, their condescention, and now this, trying to educate us how to pace.
Look lovee, i could give YOU an education about how to pace, after 15yrs of living with it I have the equivalent of a masters degree in how to do the 2nd grade level techniques you're attempting to educate me in.
You all should be learning from us, not attempting to educate us about this.

And actually our pattern recognition "software" is not malfunctioning, so we can recognise what you're doing when you're being disingenuous, when you're trying to pull the wool over our eyes, when you're trying to reframe your bullsh*t in words you think we will accept because we are too stupid to recognise it. We can recognise it easily because we've seen it all before.

ETA - Sorry all that was a bit of a rant. My patience with it all is wearing very thin this morning.

 

Thank you! Your rant has made my morning.

This in particular: