Re-framing GET as pacing, or vice-versa

ukxmrv said:
The Psych lobby is very good at incorporating whatever terms we patients use or stealing words from other less harmful regimes to try and make us feel that whatever they suggest is good or helpful.

So in the hands of these people the energy envelope becomes something to start with and is a malleable thing that can be increased over time if one sticks with their exercise regime.

The giveaway I think is when a patient doesn't have enough physical energy or strength for daily living yet is somehow convinced that a walk to an outside letterbox is within that envelope even if they start with one step a day. This is the deconditioning model and for patients who have had (as an example) a virus, spent a lot of time in bed and then recovered, this will get them walking to the outside letterbox eventually.

For me, the steps spent on getting to that letterbox means less strength / energy to spend on important things like bathing. It may go up and down all the time and someday I may even reach that letterbox. However, this is a natural fluctuation of the disease for me. I've done this so many times before now.
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I think this is it in a nutshell. I couldn’t get to the letterbox when I started, even though it was a couple of minutes away. It turned out my envelope meant I was a mild case, but they didn’t know that at the beginning.

It was very persuasive to think after reaching the letterbox and then the shop, then the tree down the road etc that I was making progress, but in fact neither myself nor the OH was doing anything other than making me rest and then test the boundaries to find out what my max limit was. Rather than encourage me to run they should have been advising on prioritisation once they identified my specific boundary rather than try and break through it.

These clinics could be a real help to the newly diagnosed if they acted as management centres rather than pretend that Pacimg/get is a treatment. They could even monitor signs of deterioration over time which would also give us some meaningful stats to improve management and a more accurate prognosis.
 
The effect the inclusion of GET in the NICE guidelines extends way beyond whatever the ME/CFS clinics are doing and what they are calling it. My experience is that it has allowed practically every GP I have seen since I got ME to say 'you should try to get more exercise'.
 
arewenearlythereyet said:
I think this is it in a nutshell. I couldn’t get to the letterbox when I started, even though it was a couple of minutes away. It turned out my envelope meant I was a mild case, but they didn’t know that at the beginning.
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You clearly had not got the idea of graded exercise therapy at that early stage. You needed a smaller,lighter envelope. If necessary you should have sent half the letter the following day.
 
Philipp said:
I remember one guy when I confronted him with my actual limits simply telling me that it is not possible to have limits this low.
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I get the same in the opposite direction.

I show muscle tone in legs and arms and hold down a FT job plus 'side gigs'; a clinician would have a very hard time making the argument that I am 'deconditioned'. But I have symptoms every day, and certainly crash -- if I go above my activity level, eat the wrong food, if it's about to rain (?!)... if the sun is in the 7th house, whatever.

adambeyoncelowe said:
People like Sharpe point to this and say, 'They're just doing it wrong!' without ever acknowledging that it's people like him who are at fault for muddying these waters.
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In fact, the patient did this! "Well, people who insist you have to push through are simply doing it wrong!"

I replied, "that's what they would say about your practitioner, that he was simply doing it wrong..."

The treatment can be whatever they decide it is for the purposes of the point they're making at the time.

adambeyoncelowe said:
My other main issue with these treatments is that they then allow clinicians to do nothing else. No drugs, no tests, nothing. It's a way of pretending to be busy and effective, while actually doing very little. But there are specific things doctors can do: drugs for pain, sleep, OI, blood pressure, hormone replacement, etc.
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Obermann said:
I think that the terminology has always been ambiguous. “Graded” does not necessarily mean that the activity level should increase.
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graded (verb): to pass gradually from one level into another.
"the sky graded from blue to white on the horizon"

Presumably, the levels are of function, or intensity of exercise. It's the definition of the word. It may be used differently from time to time, or its meaning may have altered as far as practitioners are concerned, but it's like calling it "gradually increasing exercise therapy" but then saying you don't mean exercise to increase.

Even if they now "mean it differently", it's misleading to call pacing graded exercise therapy, or vice-versa.
 
Woolie said:
It very likely was, at least in many cases, because if the GET patients, as a group, had genuinely increased their activity levels , it should have shown up in the form of improved fitness one year later. But in fact, the GET group was not significantly different from the control group on that measure.
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Not necessarily - increasing fitness appreciably requires somewhat intense activity and rest afterwards (you would certainly not be doing the same level of activity on consecutive days if the goal is to increase fitness).
 
Snow Leopard said:
Not necessarily - increasing fitness appreciably requires somewhat intense activity and rest afterwards (you would certainly not be doing the same level of activity on consecutive days if the goal is to increase fitness).
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I don't understand this. Are you saying that people could have done genuine GET (with its incremental element), been fully compliant with the regime and the incremental aspect, and still might not have shown an improvement in fitness after a year of that?
 
Woolie said:
I don't understand this. Are you saying that people could have done genuine GET (with its incremental element), been fully compliant with the regime and the incremental aspect, and still might not have shown an improvement in fitness after a year of that?
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Is that a rhetoric question @Woolie, or in earnest? (Sorry I don't get it.)

In order to increase fitness/load you need to put in recovery. So you can't just increase the volume from day to day, but you need adequate (active/passive) recovery time. After non-strenuous training one can train again. In general, men are said to need more recovery than women.

It took a while until it was understood that smartly chosen regeneration and training phases increase the fitness level much better in comparison to training plans without enough recovery, and without adequate recovery the danger of overtraining increases.

This is the theory for healthy people.

In case of ME, my personal experience is: There is no way to improve endurance performance; it is very difficult to increase intensity and/or repetitions (i.e. to build muscles during a resistance training), in my case it's not possible. It is very difficult to introduce new movements and exercises (due to terrible muscle soreness afterwards). I have to start at a ridiculously low level in order to have only mild muscle soreness afterwards; but if I keep to that, the muscle soreness will be milder in the long run.
Still, there is no increase in anything.

So coming from my personal experience, I don't understand how GET can increase the activity level in ME.
 
My muscles and joints feel less stiff and sore after moderate or intense walking (depending on how I feel). BUT, I have not been able to increase my activity intensity in over 18 years or I will get PEM. The PEM symptoms will intensify over time if you add more intensity so that in the end the 'energy envelop' will become shorter.
 
For me it depends on the phase I'm in:

Going downhill exercise of any sort, including gentle stretching will make me feel much worse.

In a bad patch, I can't even do stretches. My body doesn't like it and I will feel like I've been poisoned even if I just try to do a little. Trying just makes my body stiffen up more.

In an improving phase I can very, very carefully do some gentle, passive stretches. As long as I don't push it (difficult as I love yoga) my flexibility and stamina improves a little.

In a best phase I can stretch or even go for little walks. As long as I don't push it and never try to increase aerobic fitness.

Sadly no matter what I do I go through cycles of this remitting and relapsing pattern. Even if I manage perfectly sooner or later I'll catch a cold or we'll have some hot weather and I hit a slippery downhill slope.
 
In Australia, an exercise physiologist came to my talk in Perth and said she did "GET-with-pacing." When I looked at her published study, from late 90s, it was GET up to the point that patients experienced a setback. Then they were supposed to stay under that level and not push beyond anymore, as I understood it. So it was called GET but it seemed to me just increasing activity till the appropriate limit.
 
I did an NHS programme in 2016 that wasn’t called GET or GAT it wasn’t explicitly about increasing activity they tailored the 10 minute 1-1 sessions to the individual and I was never asked to up my activity in a graded ramping up as I had made it clear from the goals I set that I knew exercise was an energy drain I couldn’t afford. As it happens I (cough) missed the week when they talked about exercising. It is all still in there but they don’t blatantly push you into exercising or activity if it’s not your goal. Of course if it is your goal to do more as no doubt the majority of attendees are looking for then they are only supporting you to do that in a “sensible, graded” way.

I think I’ve ditched that handbook but I will see if I’ve still got it. Anyway I used to tell them what they wanted to hear about my decluttering my bedroom project. Which was ostensibly happening on top of working part time and going to the clinic. I still haven’t finished it by the way.
 
dave30th said:
So it was called GET but it seemed to me just increasing activity till the appropriate limit.
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The snag is the limit isn't fixed.

My being in a good phase, bad phase or in between dictates the limit.

Even the same, simple task on different days takes different amounts of energy. Much more of lower available energy levels on a bad day or in a worse phase.

It isn't static. Maybe this would be a appropriate for someone with mild ME, but not for the more severe, I think.
 
Invisible Woman said:
The snag is the limit isn't fixed.

My being in a good phase, bad phase or in between dictates the limit.

Even the same, simple task on different days takes different amounts of energy. Much more of lower available energy levels on a bad day or in a worse phase.

It isn't static. Maybe this would be a appropriate for someone with mild ME, but not for the more severe, I think.
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Oh no mild ME folks limits fluctuate a lot
 
Inara said:
Is that a rhetoric question @Woolie, or in earnest? (Sorry I don't get it.)
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No, in earnest.

@Snow Leopard seemed to be saying that if you gave a healthy person GET, and they complied, they would not show any improvement in fitness levels after a year. We're weren't talking about ME patients.

This is very important, because in some papers, people have made the argument that the lack of fitness improvements after a year in PACE are suggestive of non-compliance.

I am not asking about the best way to develop fitness (I agree that rest days are as important as active days, I used to be a fitness instructor pre-illness), I am asking if he thinks no increased fitness after a year of duly-followed incremental aerobic activity is a reasonable expectation. For "normal" people.
 
Woolie said:
@Snow Leopard seemed to be saying that if you gave a healthy person GET, and they complied, they would not show any improvement in fitness levels after a year. We're weren't talking about ME patients.
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Ah, thank you, obviously I misunderstood that.

Indeed an interesting question. How is the GET training plan exactly?

Intuitively, I don't think one will gain considerable muscle mass with GET.

According endurance, I would expect at least some improvement. But it depends on the GET plan. In fact, it always depends on the training plan. But I wouldn't say sticking exactly to the plan is most important. One should also listen to the body. After a year, I would expect considerable improvement of fitness of a healthy person - unless the plan is crap.

Since you were a fitness instructor, what do you say?

But wasn't the aim of GET to increase activity (or better: to return to work), "rehabilitation"? With ME, if I can train 30mins after one year, what change will that make wrt. working or socializing?
 
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