Pacing up - why it's as harmful and unevidenced as GET

Utsikt said:
In Norway, some of the pwLC use what they’ve dubbed «the 30-second method» as a way of reducing the energy cost of any given activity. If anything, it gives your frequent breaks where your can properly assess your symptoms and limits, and a natural stopping point. Training yourself to stop frequently might also make it easier to stop when you have to. So you can use the method without «pacing up».
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Unfortunately, this does no predict delayed PEM that occurs 12-16hrs+ later when you had zero symptoms earlier.
 
Murph said:
Walking has usually been the worst idea for me. I can walk a bit - I'm mild. But there's a hard limit and I can't increase my walking by walking.

Where I can improve steadily is strength.
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Thank you for the info, Murph. That generally agrees with my experience as well. I had never been able to improve my walk either. But I've noted elsewhere that muscles respond to exercise normally and you can actually build up muscle strength. The muscle strengthening for me however had not been same as improving the underlying ME/CFS condition. My PEM threshold had stayed pretty much the same once I hit the plateau.
So my theory has been that the improvement was just reconditioning within the limit. But that's only my theory based on my personal experience. I hope your improvement continues without plateauing, given all other things that you are doing along with the exercise.
 
bobbler said:
Agreed I think it is even more dangerous, and highly deceitful and long-term even more damaging in all ways. The longer and more embedded (so insidious) the more permanent the damage they will be doing which they won't take responsibility for but will have been for lying about 'won't harm'. I still cannot get my head around that 'biggest liability lie' where Gerada is in that old video telling the fake patient to push through 'because it won't harm her' - and at that point in time Gerada had no evidence it didn't harm and was happy and got away with teling that lie in training to tell other GPs to tell that lie.

They hadn't tested it didn't harm. They never have. They won't read the surveys showing the harm or allow patients to speak who were harmed without denigrating their reputations. So yes it's a lie because they never checked. ANd that's callous indifference.

But this makes 'GET' when they didn't measure the drop-outs and got the wrong patient cohort and refused to check for harms, look honest.
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I probably should have underlined

that this wasn’t just about liability but that one act removed ‘informed consent’ for patients

because out of the two pieces of information that involves: risk and likekihood of good outcome

it is the risk of harm that is the most important one in most situations

and in a situation when it hasn’t been acknowledged if people had harm from pace nevermind measured like a yellow card system should have been applied

then people SHOULD at least have been left with an answer of ‘we don’t know’ in order that people could know they were Guinea pigging their own bodies and would have stopped when deterioration seemed to be the result. Instead of having those around then trained to metaphorically assume they failed or need to do it again.

The difference that lie made to whether people tried something but with some limitation on the effect of harm that any other treatment would have as logic is huge. People have the right that if statins or paracetamol they take make them worse they go back to their GP and are believed and are allowed to stop it and are heard. I’m unaware of any other situation where people are forced to continue to do harm to themselves. And due to the nature of the condition it’s that continuing over longer term that does the most permanent damage vs if someone ‘sucked it and see’ and was allowed the ‘see’ bit.

we are still stuck in this hell where an entire sect of medicine believes it is above the basic oath including informed consent. That’s what randomly and for no reason labelling some patients as psychosomatic so not to ever be heard about their own bodies did, along with them removing , and still refusing to give back, autonomy - with no justifiable reason and despite their ‘claimed justification’ of ‘to help’ having been proven to have harmed us.

so this video had some incredible human rights implications none of which could be justified by any knowledge they had. It wrecked relationships, removed voices and existing and threw people out of being humans with a right to healthcare to be treated as people whose voice didn’t exist

so that that information on harm would never be collected/believed even when it appeared
 
In your post you touched on something I have beem thinking but not in specific words. That is if prolonged pushing of PEM can make you worse.

I still undiagnosed with cfs (waiting) and its been about a year and a half. Everything eaw being blamed on thyroid issues so I felt validated constantly pushing myself despite crashes on a weekly basis... But I was always thinking soon as tge thyroid is sorted it will be fine.

Thyroid "sorted" (closely monitored by me to stay that way) and surprise... nothing changed. Then I got a sinus infection that lead to dysautonomia since. I read that cfs and dysautonomia occur together often.... So, I had been wondering if those months of pushing myself caused this worsening (and dysautonomia).

I know no one can really answer that with certainty but your post makes me think it's not just my own thought.
 
PrairieLights said:
So, I had been wondering if those months of pushing myself caused this worsening (and dysautonomia).

I know no one can really answer that with certainty but your post makes me think it's not just my own thought.
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I’m sorry that you’ve gotten worse.

I have long covid with PEM and I am about to be diagnosed with ME/CFS if the blood work checks out. I pushed (because of gaslighting), and I got way worse. That’s very normal. So if you have PEM, you should really respect it.
 
PrairieLights said:
In your post you touched on something I have beem thinking but not in specific words. That is if prolonged pushing of PEM can make you worse.
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I think a lot of us have experienced this. Some it's because they have been subjected to graded exercise therapy where they are expected to do a bit more each week, and push through if they crash, so it promotes repetitive crashing and ends up worsening. Some of us because we try to hold down jobs that are more than our capacity and crash repeatedly, and so on.
 
Trish said:
Some of us because we try to hold down jobs that are more than our capacity and crash repeatedly, and so on.
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In my experience, including talking with others, we nearly always want to do more. When doctors encourage us to do more, before we learn to pace our activity, we keep pushing. The more we push, the more we get done, right? If you have ME or CFS, that is nearly always wrong.

Pushing to do more caused me to drop out of my PhD candidacy. I got so bad I could barely talk, barely walk, and could not count to 3. It took me a long time after that to learn pacing as I could not survive without groceries and kept grocery shopping ... this was before online ordering was a thing in Australia. I would shop, crash, then shop again. Plus I had to cook the food.

As I learnt to pace things slowly improved, but I had been sick a long time and it took maybe five years for pacing to really make a big difference. I have been pacing after that for about 20 years now. Pacing helps me cope, but for me its not a cure.

More recently I have been slowly testing the thirty second rule, from Perikles Simon in Germany. He claims we hurt ourselves if we do intense activity for over 30 seconds. You not only do things for thirty seconds, you also do not allow yourself to get out of breath. Then you rest for one to two minutes. So far I have found the advice works, and have been able to do resistance training to regain a little muscle. I do seem to have hit a plateau though, and I need much more rest than he suggests, an hour or two, not minutes, at least for resistance training.
 
alex3619 said:
More recently I have been slowly testing the thirty second rule, from Perikles Simon in Germany. He claims we hurt ourselves if we do intense activity for over 30 seconds. You not only do things for thirty seconds, you also do not allow yourself to get out of breath.
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That sounds like what the Workwelll people advise too, though I think they tell people to start with less than 30 seconds before resting.
 
oldtimer said:
I wouldn’t/couldn't do it if I had already been at all physically active beforehand though. Any extended activity like vacuuming or even standing for any length of time wipes me out for the day.
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Maybe that's why I can't do it without crashing. I'm already at my limit for the day with what I need to do physically, so there's no spare capacity for strengthening exercises.
 
Utsikt said:
You don’t have to add more activity. It can be used as a way to reduce the «energy cost» of a given activity, for lack of a better word.
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Thanks, yes, I'm aware of that, and do it to the extent that I can, but it's impossible in many activities such as having an shower or washing dishes.

And it would actually add more energy cost if an activity that takes more than 30 seconds takes place in a room without a bed to lie on in the rest breaks, so you'd have to add walking to the other room, lying down, getting up again walking back to the activity and so on.

I'm happy for people who can fit in some 30 second bursts of high intensity activity followed by rests into their energy envelope. We just need to be aware that it's not possible for some of us.
 
Trish said:
I think a lot of us have experienced this. Some it's because they have been subjected to graded exercise therapy where they are expected to do a bit more each week, and push through if they crash, so it promotes repetitive crashing and ends up worsening. Some of us because we try to hold down jobs that are more than our capacity and crash repeatedly, and so on.
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Yes, that was me. I was trying to keep my job that I loved. But then got worse and was off 8 months before I resignedm
 
Trish said:
And it would actually add more energy cost if an activity that takes more than 30 seconds takes place in a room without a bed to lie on in the rest breaks, so you'd have to add walking to the other room, lying down, getting up again walking back to the activity and so on.
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When I use the bathroom, I have a chair that I can sit on by the sink with my feet up on the toilet lid. So I take a 30 seconds break before I wash my hands, and another before I brush my teeth. If my muscles are bad that day, I might break the brushing into two segments. I rest my arms and shoulders by placing mye forearms in my lap, kind of like if you were wearing a sling.

This means that my POTS and my core doesn’t get a break, but it’s usually within my limits to sit for a few minutes at a time. My arms are the bottle neck, so it’s beneficial to avoid overloading them.

The method is intended to be quite rigorous, but for some people, it can be adapted to achieve at least some of the energy conservation benefits within their individual limits and circumstances.

It isn’t a perfect implementation, but it’s better than nothing in my case. YMMW.

As for taking a shower, a shower chair would allow me to rest my arms in my lap if that proves to be a net benefit overall. Again, YMMW.

Trish said:
I'm happy for people who can fit in some 30 second bursts of high intensity activity followed by rests into their energy envelope. We just need to be aware that it's not possible for some of us.
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Of course! It was never my intention to say that everyone should be able to do it, or even want to do it. These are just suggestions of things that have been beneficial for some.
 
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