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

Unfortunately, this does no predict delayed PEM that occurs 12-16hrs+ later when you had zero symptoms earlier.

 

No, it does not. That’s why I didn’t label is as PEM-safe, and stated that it is used in an effort to reduce the energy cost of any given activity.

 

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.

 

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.

 

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.

 

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.

 

@oldtimer @Trish you can use the 30 sec method for the tasks you’re currently doing. 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.

 

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

 

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.

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.

 

I decided to try the 30 high energy activity since I'd not heard of that one and worth a try in case it suits me. It doesn't.