UK: Physios for ME

[Utsikt]

Just for fun, I'll try to be pedantic back: in the conversion from rotational to translational motion, no conversion of energy (under the conventional definition) takes place if we ignore friction losses. Both forms of motion give rise to kinetic energy. Where a conversion does take place is from the chemical energy in the battery or fuel to the kinetic energy the motor outputs, which is then transmitted, not converted.

I think you’re right about the language, that’s it’s a transfer and not a conversion. I got my translations messed up because of transfer vs transformation!

You can of course say that the flat tire increases friction and causes more kinetic energy to be converted to heat, and I'd have no retort.

I was thinking more of less roundness and pressure for one wheel => more spinning freely => less energy put into the pavement to propell the car forward. I guess that the energy would primarily be lost to the friction within the system, resulting in heat and noise, so it would still be the same thing.

But we’re getting off topic and it’s entirely my fault. Thank you for entertaining my digression!

 

[bobbler]

Yes, it is. Thank you. @PhysiosforME

Some comments:

This helps to explain the main symptom of ME/CFS, post-exertional malaise (PEM). Any activity that uses energy can cause PEM. There can be over 30 symptoms of PEM and people with ME/CFS usually experience PEM up to 24 to 48 hours after the activity. Called a crash, they can last days, weeks or months; some people never recover.​

I am not convinced the 'energy' is the right framing for PEM. It suggests an understanding of underlying mechanisms (e.g. mitochondria) that just doesn't exist yet. Of the current imperfect options I prefer 'activity capacity' and variants.

Activity capacity is a more general term that covers any active behaviour – physical, cognitive, emotional, and social, and to any degree, without presupposing where the underlying pathology may lie. I think is a useful practical distinction in everyday life for patients, and for helping non-patients understand the concept better.

It may turn out to be that the primary problem is with the biochemical energy production system itself, or it may be something downstream from that which blocks the normal use of that available energy, or it may that something else is demanding so much of the overall energy budget that many unrelated systems are having to operate in a compromised sub-par manner on a significantly reduced energy budget and functional capacity.

We just don't know the answers to these questions yet.

usually experience PEM up to 24 to 48 hours after the activity.​

I would phrase it as: ...usually experience the peak of PEM up to 24 to 48 hours after the activity.

Also, I draw a distinction between a single episode of PEM, and a full crash, which I regard more as the result of repeat episodes of PEM, with insufficient recovery time in between them (to the extent that is possible). A full crash is much more serious than a single episode of PEM.

I also think that PEM is probably a permanent underlying feature of ME/CFS, maybe even the, or at least a, defining feature. What differs is the degree of PEM, from practically non-existent, through to ongoing and extremely serious, debilitating, and disabling.

Lastly, planning, while relevant and useful, also needs to be accompanied by the equal recognition that one critical feature of ME/CFS is that there are large variability and unpredictability components to it, and they need to be allowed for in any planning.

That, of course, is particularly so for new inexperienced patients. Over time, mostly via lived experience and sheer necessity, patients will gain a better practical understanding of it, and find better ways to adapt and respond to, and where possible mitigate, the nature and limitations of the condition.

But even if it is possible (and I think it usually will be) to dampen down the variability and unpredictability – which is a substantial benefit in its own right, even just for quality of life independent of any practical gain in activity capacity – I think it will remain a significant feature require constant navigation and accommodation.

The real value, certainly at this stage, from clinicians like PhysiosforME is in being able to expedite that process for patients, to help minimise the difficulty, time, and cost of that early learning and adaption to often profoundly adverse changed health circumstances. The earlier in a patient's journey this can happen, the better the overall outcome is going to be.

I think this is a really important start at elucidating the pattern that we all suffer from, but with different severities and perhaps also across individuals different 'combinations'(? I don't have a word for this yet but I mean I have had times where I would get properly crushing crashes but between little windows of function to a level that confused people because that's when they saw me, but also times where I was 'carrying PEM' or whatever the term is)

I like to see it emphasised that there's PEM in the way people like eg Sarah Tyson seem to envisage it and what I've ever experienced and would like a really interesting discussion page to help my brain work it out with others and see what they have experienced over the years (as it varies of course by situation and year) not because this is 'wrong', certainly compared to the other stuff out there, but because I think if we can work it out between us then others stand a chance because we can communicate it having understood it ourselves

 

[Jonathan Edwards]

This I find hard to accept. Energy is physics no matter what.

I think we have to accept it. Human perception is very indirect. All our experiences are signals that one part of a brain uses to tell another part about something. Red, as we commonly understand it, has nothing to do with red light in physics, except for the fact that in most people the brain uses the 'red' experience to talk about red light. 'Energy' as we sense it has similarly nothing directly to do with energy as in physics. And things are much worse than that because we intuitively see ourselves as 'minds' operating a body which may or may not do as we bid. Things are way more complicated than that. There is no single 'agent' in a human being that is also the 'experiencer'. Which is why the idea of mind-body interaction is so off target. The biology doesn;t have a mind and body like that.

I understand that it is hard for a lot of people to detach themselves from these intuitive concepts. But I think there are serious dangers in trying to use muddled stories that confuse vernacular energy with physics energy in trying to explain ME/CFS to people. The reality is that we have no idea what is going wrong. People with ME/CFS may well adopt styles of management that in the long term do them harm if they believe stories of this sort that purport to be based on physiology but are not.

 

[Jonathan Edwards]

But what I do think people confuse very much with ME is using the word "energy" in its generally meant usage, which is confusing and misleading because what they really mean is power, which is energy per unit time - but people just speak of energy.

I actually think people mostly mean the possibility of raising a level of force. I doubt people have an intuitive idea of their power output but they know whether or not they can lift an arm. Doing things slowly probably often involves using less force and that does not invoke a concept of energy or energy supply or conservation or power.

 

[Barry]

using less force and that does not invoke a concept of energy or energy supply or conservation or power

Actually it does. Energy used = applied force x distance moved. If you can only apply less force, then the energy used is less.

And given that power = energy/time, then less force means less power.