Exhaustion in ME/CFS, what is it and what causes it - discussion thread

We agree on all of this, at least up to "But there is an inability to use them etc" I think this is inaccurate. As sick as we can get, we ALWAYS have volition, we usually can put forth an effort (although admittedly some times we are so debilitated virtually no effort is possible); however, those ingrained capabilities don't translate into much substance because we are too sick. For me, effort and volition are inherent, part of our fabric just as our height or reach or shoe size are. None of those characteristics have any bearing on what I am unable to do because of my ME/CFS or Lyme or Babesia or POTS. Those diseases limit me because they destroy my balance, weaken me to invalid status, corrode my brain, confine me to bed.

Volition and effort are with me always, just like my height, but just like my height, they bring no import to what has disabled me. They have no relevance other than if they are called into question by people challenging my contested disease - and by extension, my integrity.

That is why they do not belong in any serious conversation about us and our disease.

ETA: I cannot think of any disease where volition and effort are assigned a diagnostic role or assume any part in disease characterization. If there are others, I suspect those illness have some contested history.

 

Hey, I got beat over the head for resorting to an analogy. Maybe we should all get the equal treatment!

So, you chop wood all day, and you can't do anything else. Is that a fatigue? exhaustion? Whatever you call it, it's the same thing: it's a sensation that your body/brain creates to stop you from doing more. It doesn't matter whether it is caused by micro-damage, energy depletion, infection or depression. In fact, the way you describe MECFS fatigue as depletion is how depressed people describe their fatigue. Does that mean MECFS is a form of depression? Hyper-focusing on the subjective sensation without any testable difference is more likely to lead you to a false belief rather than any real insights.

How?

And subjective sensation is more medical somehow? Show me a measurement showing they are different, and I'll accept it as medical/scientific. If anything, the evidence is against the energy/depletion theory: MECFS patients can produce enough power to pedal 10-100w for 10 minutes with no discernible difference to similarly deconditioned controls.

"The boxer had a flu, felt so fatigued/exhausted that he couldn't throw a punch". How does that make the word change so significant?

 

That's what fatigue is in exercise to failure: your muscles can no longer generate power to move the weight another inch.

 

These are discussions that would benefit from someone with a channelopathy chiming in. There's a reason that Australian school of thought believe ME/CFS may be a channelopathy. Fatigue and exhaustion and effort and volition take on a different hue in that context.

 

I agree that we’ve an issue where many don’t understand that the iller you get the more gargantuan effort is required for things less ill don’t even think about doing - brushing their teeth is nothing and almost automatic whilst they get ready and think about the day. The determination when you are severe to find a moment where you are well enough to sit leaning against something and trying and hold your arm up for long enough to have done a half decent job is huge.

which was why ‘effort’ was a real misleading problem term for Walutt to pick on

I’d forgotten this thread for a while and the volition idea needs me more on form to think through on precise terms. There is of course the issue most reading volition don’t really bother with precise so take what they want from it - and that can’t be ignored even if theoretically if people were being precise then …. It doesn’t help us to have a moral superior position of saying ‘well they just are interpreting volition wrongly and don’t know their terms’ because they go off and create whole initiatives and wrong treatment on it which can last for years.

 

Thats an excellent infographic! You dont have a link to the source do you, i cant read at the bottom where it's coming from its a bit blurred on my screen & I'ld like to print & use it?

 

Fourth page of the PDF of "Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (Mayo Clinic Proceedings Journal):

Link | PDF

 

Thanks @Nightsong