Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study, 2020, Broadbent et al

Central to this theme was the constant feedback to participants that the exercises needed to be self-paced, and that participants were free to reduce time in the water if they were tired; in other words, there was no pressure to constantly increase duration or exercise intensity. The monitoring of each participant’s HR and RPE throughout each session was fundamental to their self-management.

The success of the current study suggests that self-pacing and short periods or intervals of low-intensity exercise might be more effective for ME/CFS patients [13,27] than exercise that is progressed in intensity with no allowance for ‘payback’ periods or ‘set-back’ management. The concept of ‘payback’ was one that most participants had mentioned throughout the study. They were aware that if they ‘over-did’ any activity, their symptoms might be worse 24–48 h later, and that they would need to either rest or reduce any physical activity to conserve energy and avoid further exacerbation [39]. Our findings highlight the importance of patients maintaining a balance between activity and rest [4,14,39,41]. Interestingly, only one participant identified payback during the early part of the study but commented that she learned to pace herself and to recover.
Click to expand...
 
Dolphin said:
I think there can be lots of things one can find to do that feel good doing them. However, the question is what is the payback, how sustainable are they, and does it mean one has to cut down other activities.
Click to expand...

Lots of people in our local clubs enjoy what they do Saturday night but have payback Sunday morning :) It doesn't stop them doing it again the next week!

And, of course, we all know that drinking a lot of alcohol is never dangerous in the long term....
 
Michiel Tack said:
It does seem to be based on the idea that CFS patients suffer from avoidance behaviour and that prescribing exercise as a treatment would make them fitter and benefit their health in all sorts of ways.
Click to expand...

yes but that's different than claiming that their causing their own illness and that it is caused by deconditioning. obviously she thought people could get some benefits from doing "exercise" and we know that patients really don't need to be encouraged to do more. But to me it's more of an effort to help people get the most out of their limits than a "graded exercise" program, even though she named it that. To me, the salient feature of GET is pushing through symptoms. But I understand why others would view it differently.
 
dave30th said:
yes but that's different than claiming that their causing their own illness and that it is caused by deconditioning. obviously she thought people could get some benefits from doing "exercise" and we know that patients really don't need to be encouraged to do more. But to me it's more of an effort to help people get the most out of their limits than a "graded exercise" program, even though she named it that. To me, the salient feature of GET is pushing through symptoms. But I understand why others would view it differently.
Click to expand...
I've seen this other places as well. Health care professionals saying "graded exercise" when they mean adapted/limited exercise.
It's frustrating if we start talking past each other about such an important matter.
 
shak8 said:
Forgot to mention,I think Peter Trewhitt did, that by the time you anxiously prep yourself to get out of the house (assuming that you can get dressed, walk to the car, drive the car, walk to the pool building, withstand the noise and confusion, handle the sensory overload, handle the personalities, etc. etc.) your day may be shot. This seems to be for the mildest of mild, whether fibro or ME or a combo of both.

Basically all that for a bit of moving gently in the water for a few minutes and saying hello and smiling at one another, perhaps a chat.

Not to mention the ugly process of taking off a wet swim suit, hearing the god-awful dryers like lawn mowers in your ears. Locker doors slamming. And you pay to do this.
Click to expand...
Sadly, too often it is the mildest of ME, and then results are generalised to all .
 
Invisible Woman said:
I can see where you're coming from because this is how I thought of it when I became ill.

However I wasn't deconditioned to start with. I swam twice a week 50*25m lengths in 45 minutes, I also did muscle toning classes. I was fitter than most. I bought into this idea, in part, because I was used to being fit. So, as I lost that level of fitness I thought perhaps I was deconditioned, but I was still probably at least as fit as a sedentary person, if not more so.

In hindsight, the danger here is -

PEM can be delayed so you might feel okay doing the exercise but be clobbered 3 days later, but if you haven't learned about PEM you may not make the connection.

It can take several weeks to fully recover, & if you haven't made the connection & are mildly enough affected, you'll go back to the pool and do it again. So you go give yourself another dose of PEM before you've gotten through the first bout.

Rinse and repeat several times and you've got compound PEM - you won't know what's happened & so you drop out temporarily.

Others seem to manage fine & keep it up. They may be even more mild than you, or be suffering from fatigue not chronic fatigue syndrome, or FM. You don't know that though & think you've just caught a bug.

When you're well enough to have another go, you do it all again. Or you decide maybe water exercise isn't for you (maybe you caught a bug at the pool before?) and you try the same thing with some other form of exercise.

So you continually put yourself into a series of compound PEM.

N=1 & all that, but I believe this kind of thinking and logic is what pushed me into severe ME. Long term follow ups are essential with this kind of thing because in the short term things may seem fine but long term there can be a lot of damage done.
Click to expand...
Frame that as going to school and you have the same situation for kids
 
Thinking about this, I realised that what we have is this circular argument

Someone gets an infection or whatever which limits what they can do. If they can only manage 50% or less of what they could before for six months they are diagnosed with CFS.

Now six months of doing less than half what you did before will make you less fit so BY DEFINITION you have to be deconditioned before you can be diagnosed as having CFS.

Then they turn round and say that being deconditioned causes CFS.

If you need to be doing 50% less than before it means that BY DEFINITION again you must be less fit than you were when you became ill.

It makes no sense at all.
 
chrisb said:
Furthermore, it is difficult to think of a pathological mechanism by which gradual increased activity could be harmful,8'9 even in the minority of patients with clear cut neuromuscular pathology.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371151/pdf/brjgenprac00083-0040.pdf

I suspect that this represents the best evidence on which the deconditioning model is based. Persuasive, isn't it?
Click to expand...

Isn't that a common excuse of medical practitioners responsible for iatrogenic harm? "I could not think of any pathological mechanism by which ..... could be harmful".
 
You must log in or register to reply here.
Back
Top Bottom