Or whether executive function itself is damaged, or is okay but is having to work much harder to deal with the consequences of the underlying pathology, and so is operating well outside its normal sustainable parameters?
I am now pretty sure that just about everything we 'know' about ME (and LC, etc) is just the consequences of having to deal with whatever has gone wrong, not the underlying pathology itself.
Agreed on this one. Here's a simple 'experiment': when already not a 'good day' (but not bad as I'd got out of the house) I had to be taken to an appointment in the car. There were lots of road works meaning uneven surfaces lots of swinging round and stopping because of one side of road closed for a bit and waiting for turn to pull out and so on. So keeping upright/from falling or pulling anything when swung round, the visual stuff, and so on all made it a huge physical task. I'm sure all of these to do with balance and visual info etc were probably harder for my severity of ME. Every so often the driver tried to talk to me or I did which just sent me over the edge you could feel it in the 'computer says no' sense. I also tend to motion sickness anyway so clearly sensitive to the movement information stuff (an area I have always found fascinating - did you know the eye actual has cells that directly detect 'speed', as well as those where there might be a space-time calculation).
Anyway I got in the car able to speak and was unable to by the end of shortish journey. Not just the shaken up type seeming tired slurry struggle with words, but stuttery struggle. Not too dissimilar to what it seems some of those getting dumped into FND might present with. Fortunately it wore off for being still waiting to go in, and thank goodness having someone who I'd like all those who interact with ME to be trained by (straightforward Qs, quiet, nice, tried to understand the answer rather than come back until you've done it perfectly or hear what they want), given I had an appointment and by the end was somewhat able to function enough for that having had to explain half by showing/talking for the first five minutes that it had been a journey and my speech was affected.
Of course then there is the PEM bit.. and that is where this lot come completely unstuck and seem to be determined to do everything to avoid studying 'the actual disease' to the point of them reinventing into FND. If someone has enough basic braincells and empathy to understand that two-part combination of reactions and symptoms to different things they 'get' the condition. And that is what they are trying to disappear. PEM, proper PEM. The as you get more severe, at the time stuff shouldn't surprise them (tho surprisingly it does) some get it before being allowed to hide behind their brainwashing so they don't need to give leeway. But the PEM, the suddenly not waking up until 1pm even though it was a work day and all the alarms in the world were set and
still there is just no function, well that even surprised me when it happened. And I knew what I'd done in the run up and had the condition for over a decade. And I don't
think it was hibernation. It's just 'kaput, spent, bust'.
And all that proves something we shouldn't have to prove. If it weren't for idiots who want to think horrible things about others instead of listening to them. But there aren't many other conditions where they had to run 25 marathons in a row and collapse for someone to admit the cause wasn't them doing enough marathon running (except they still don't even with us shockingly).
But it probably is all a side-show. A downstream. But heck all this downstream should be massive impetus for them to take all that funding from all these people and pump it into tose who will find the cell or whatever that's warped or missing or whatever underneath it all.
Except
maybe if they'd been
any good at wanting to keep proper detail diagnoses and types for people, along with comorbidities
then we'd have clues about which bits tend to go [wrong] with whom and that would perhaps provide some narrowing down about what it could or couldn't be underneath it all. So our hell might have been worth something to go through. If only people who knew how the body 'fitted together' could be interested in the proper lived testimony even of just a car journey for someone on a good day vs bad and so on.
And it shouldn't be hard because
everyone has had flu and nearly everyone has had a time where they haven't had ideal conditions whilst being that sick and how awful it was. So they are utterly stupid for thinking that doing that to someone would cure them. I mean they can dive into their pseudophil (philosophy in fake language only because it
ain't thinking
properly) to kid themselves but phenomenology really should be what
I've just described not their tosh of metaphysical journey they've overlaid as observer instead of it coming from the individual themselves. First person. Not limited only into their dodgy narratives.
This is all just a manifesto to make something that is illness and disability being treated badly sound like 'psychiatric' pyschoanalytic tosh. And I can never work out whether it is really callous ideology or some strange obsessive passionate belief in some old neuresthnia world that never really existed but some still believe did that drives all this most strange of stuff. Because it does get strange and Freudian.
