Re-framing GET as pacing, or vice-versa

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.

 

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.

 

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.

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.

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.

 

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

 

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).

 

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?

 

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.

 

Yes, this is true for me, too. Good point!

Edit: After stretching and so on...walking increases stiffness in my case.

 

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.

 

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.

 

Ah. OK. I was diagnosed as moderate and then deteriorated to severe so I don't know what mild might be like and didn't want to assume.

 

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.

 

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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