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

This rebranding of pacing as APT where it was used as a straw man in the PACE trial and would therefore be less effective than the predetermined outcome for CBT (Constant Bullsh*t Treatment) and GET (Gradual Euthanasia Therapy) is indeed strange as the bio psych mob have already discredited pacing as operationalised in research protocols.
 
I wonder if it's time for a glossary thread - all the BPS acronyms and hijacked terms up there so newbies can look 'em up.

Then when they're presented with "new wine in old bottles" ( or in this case perhaps old wine in stolen bottles is more apt ) they can dig a little deeper before allowing themselves to be lured into harms way.
 
JemPD said:
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.
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Yes! This!
If this is just a misinterpretation of normal signals, why didn't I have this in the years before? Why could I just start up again after every week of flu, every broken bone, every period without serious exercise? As if we havent experienced any discomfort in our previous life, to not know the difference between normal and abnormal:confused:
 
unicorn7 said:
Yes! This!
If this is just a misinterpretation of normal signals, why didn't I have this in the years before? Why could I just start up again after every week of flu, every broken bone, every period without serious exercise? As if we havent experienced any discomfort in our previous life, to not know the difference between normal and abnormal:confused:
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Precisely. :banghead::banghead::banghead:
 
When will they ever realize that we don't need to learn to set targets or how to increase activity, we need to learn how to bloody rest! I fully admit I'm crap at it. If they could provide us all with some help at home instead of throwing money at these numpties we might actually start to improve a little.
 
JemPD said:
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.
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The bit that always gets me is the fact that, supposedly, we are Type A/overachiever personalities who, following some infection or other, had a total personality shift such that now we are activity avoiders who are too scared to do anything, despite sometimes decades of life previously spent pushing through illness and adversity. They want to have it both ways: blame us for having the “wrong” personality, and then blame us for for behaving in ways which are in complete contradiction to our supposed personality. Anything to avoid the obvious: that perhaps the issue isn’t behavioural. Perhaps the behaviour (minimising activity) is adaptive, rather than maladaptive. Perhaps so many patients all saying the same thing (that GET is harmful) means something and is worth listening to.
 
TiredSam said:
That was a rant after my own heart. Rantastic :thumbup:.
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Well thats a high compliment coming from you TiredSam, i love your rants :)

Simone said:
The bit that always gets me is the fact that, supposedly, we are Type A/overachiever personalities who, following some infection or other, had a total personality shift such that now we are activity avoiders who are too scared to do anything, despite sometimes decades of life previously spent pushing through illness and adversity. They want to have it both ways: blame us for having the “wrong” personality, and then blame us for for behaving in ways which are in complete contradiction to our supposed personality. Anything to avoid the obvious: that perhaps the issue isn’t behavioural. Perhaps the behaviour (minimising activity) is adaptive, rather than maladaptive.
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That is SUCH a good point, & one i dont think i've ever really noticed before!!:thumbup: They cant have it both ways!:banghead:
 
I just find it amazing that in an obesity crisis with so many overweight children around somehow these crazies cant see that decondtioning is not the explanation for children with ME. There's no shortage of kids who need to lose a lost of weight who are perfectly capable of running around living a normal life, yet at the same time there are housebound or bedbound kids of normal weight who are obviously not deconditioned but have a serious medical condition.
 
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JemPD said:
That is SUCH a good point, & one i dont think i've ever really noticed before!!:thumbup: They cant have it both ways!:banghead:
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I got this from a neuro - he went on about some people just being weaker than others - not their fault, just the way they're wired etc.

I stopped him and pointed out he knew nothing about me. So I told him a bit about me and then he was: " well, yes. Type A,blah blah blah.... "

I told him I thought he was on to something. He beamed. Yes, I went on, clearly I have a multiple personality disorder....I've managed to switch from being weak and feeble to a Type A in under 10 minutes!!

Cue spluttering.
 
My mother unfortunately had a fall and broke both legs last summer. A couple of weeks ago she went to her doctor to discuss the continuing pain. The doctor explained to her how strange it is that the brain can influence how much we perceive pain. My mother agreed that her brain was behaving very strangely and asked why it had stopped her perceiving pain in one leg but not the other. She left with a referral for an MRI scan shortly thereafter.
 
Invisible Woman said:
I told him I thought he was on to something. He beamed. Yes, I went on, clearly I have a multiple personality disorder....I've managed to switch from being weak and feeble to a Type A in under 10 minutes!!

Cue spluttering.
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hahaha brilliant :D

TiredSam said:
My mother unfortunately had a fall and broke both legs last summer. A couple of weeks ago she went to her doctor to discuss the continuing pain. The doctor explained to her how strange it is that the brain can influence how much we perceive pain. My mother agreed that her brain was behaving very strangely and asked why it had stopped her perceiving pain in one leg but not the other. She left with a referral for an MRI scan shortly thereafter.
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again :D brilliant
 
large donner said:
I just find it amazing that in an obesity crisis with so many overweight children around somehow these crazies cant see that decondtioning is not the explanation for children with ME. There's no shortage of kids who need to lose a lost of weight who are perfectly capable of running around living a normal life, yet at the same time there are housebound or bedbound kids of normal weight who are obviously not deconditioned but have a serious medical condition.
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I understand the point you’re making LD

I don’t know about kids but there are some people with ME who are overweight/obese not least because of the medications like amitryptiline causing weight gain as a side effect but also people who don’t have support may need to rely on convenience foods. In these circumstances we can have a double whammy of people thinking ME is deconditioning and obesity is decondiioning so gratuitous suggestions about going for walks multiply. Obesity can be addressed through a radical change in diet in cutting sugar out and processed carbs but exercise is not essential.
 
JemPD said:
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.
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I darn near stood up and clapped at this point in your fabulous rant, @JemPD. Thankfully my fear avoidance kicked in just in time.

I'll add: We even know that when they say "Persistent Physical Symptoms", they mean "Psychosomatic"! Yep, we cracked that nut. Despite being unable to manage our own lives, we're surprisingly astute at times.

This is very much in line with how GET, CBT and APT were named in the PACE trial manuals.
APT was called "Simple Adaptive Pacing"
GET was "Simple Incremental Pacing"
CBT was "Complex Incremental Pacing"

And in an Action for ME booklet on pacing, Peter Gladwell, Clinical Specialist Physiotherapist, talks about increasing activity/CBT/GET as "pacing up" (do see the full quote, link below, as it's more nuanced than these quotes will suggest):

“Effective pacing can also offer a firm foundation for pacing up, which involves
a considered plan to try and nudge up the level of an activity or exercise.
“The PACE trial indicated that pacing up slowly, under specialist supervision,
can lead to a modest increase in function, compared to pacing alone.

...still Peter Gladwell:
“We need to recognise that pacing up did not lead to increased function for a
significant proportion of the research participants.
“A testing, gentle nudge upwards will not always be successful and this needs
to be recognised from the outset.”

p.13-14 https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

I can only imagine the dizzy heights GETSET Julie got to when she paced up. She was on fire after stabilizing her routine.
 
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