I was confused because eg in the Daily Mail article in the above comment is the following related to this:
So I'm slightly trying to unpick what they do specifically mean when they say it isn't a 'lack of motivation' but 'a mismatch between what someone thinks they can achieve and what their bodies perform'
It isn't my experience either because my issue is the payback from having forced (or just being stupid or over-eager) my way through things before-hand, or not even forced. I'm likely to be ham-fisted with my words here, but appreciated the Workwell paper that said pwme weren't 'unfit'. An awkward feature of having ME/CFS for many years before the science came out was being more capable than most physically on eg individual tasks or activities (even if this was a shadow of my former self), of course I wasn't trying to do them on a bad day generally because I was knocked out fast asleep. eg The connection with having helped pick up that fridge wasn't as obvious because I was doing other things too. But boy did people pick up on my 'bad behaviour'/illness/strange sleep patterns - all of which are just plain ME but back then..
anyway, the point here is the gap from good day-bad day differences on this particular finding I'm struggling to explain.
I also get fatiguability now for many years and e.g. my arm shakes as I lift if I've done too much and eventually just can't lift it at all in that context. Muscles twitching and doing very specific 'the tugs' type jerks are another part of that. It is normally immediate so perhaps closer to this example. But I still haven't worked out in that context how it all fits with this.
I'm also wary when someone is taking evidence from scans to understand whether the scan was only of the brain (the task was a hand strength/exertion test), on the basis that the brain is in effect part of a system. But also what within that system is and isn't 'mapped' from the method but has to be assumed (like cellular level).
And so to understand the following more precisely:
I'm now trying to think around what they would have seen should there be an issue 'elsewhere in the system' between the hand gripping and if you want to think of it that way the part of the brain saying 'keep up the gripping'. ie if it were 'something else' causing the ability to keep gripping to decrease, would the feedback loop look similar in that part of the brain?
Although even that is something that has been labelled as the function based on mapping healthy individuals or other conditions I guess - in whom exertion = exerting effort (I'm not just being pedantic as theoretically exertion could be 'done to' e.g. very loud noise)
Thank you.
I think what Walitt is trying to do is to find a new spin on BPS, quite similar to what the new FND brigade is doing.
At the very bottom of the discussion lingers the question and uncertainty of/around 'free will' (not really a question actually, cells behavior, and therefore our behavior, is determined). I guess the 'new spin' consists more or less of:
'yes, these people/patients have no choice, it is their brain telling them to not exert effort, but, there is certainly no damage or real danger in trying to modulate these choices and behavior, because it is a false alarm anyways'.
And this, is 100% wrong (and indeed very dangerous), at the very least in in my very own case of ME, but, I must assume also in many other people/cases.
I can not exclude that there are people with ME that have some kind of subconsciously programmed fear or mismatch that leads to 'less effort', though (but wouldn't that be equivalent to anhedonia?). Nobody can, and that is the heart of the issue: Yes, ME is a central disease, and/but we know very little about this center, the brain.
I can also explain why I am so sure about my own case. Every single deterioration I had was triggered by over-exertion or an infection. The loss of function appeared almost instantaneously with every baseline worsening crash. What this means is that there was no room/not enough time for a significant deconditioning to happen that could explain it. There is deconditioning, obviously, but it it's a side effect.
How does Walitt's concept explain deterioration in patients? It can't. It tries to explain the end result in a very awkward kind of manner. Either there are immunological effects that cause the deterioration or there aren't. That's it. The rest is just assumptions about people's 'trained behavior' and mumblejumble about 'preferences'.
makes complete sense - one of those quirks of language that amuses me that I read it as that (functionedly-focused on trying to keep track, I'm finding it hard with a paper that has so many bits all at once in it as one thread)!
