Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

[Jonathan Edwards]

This smacks of opinion but it is framed as fact. Please remember this is a science forum.

It is fact. The scientific discussions here are at a level I have never seen elsewhere - because people are motivated to get a real answer. There is no way that people engaging in this debate like this can have significantly blunted thinking in the way that people with MS or Parkinson's or Altzheimer's can do. Maeve's last message about her health was not just eloquent but very intelligently contructed yet she was physically unable to do anything.

I do not know of a single case of someone with ME/CFS having major intellectual impairment. People may find it very hard to concentrate, or think rapidly. They don't call their husbands 'dad' or pee in the corner of the bedroom.

 

[duncan]

I do not know of a single case of someone with ME/CFS having major intellectual impairment

People with ME share core diagnostic requirements. Things like unrefreshing sleep, PEM, OI, etc. They all have these factors to varying degrees. Same is true for things like balance or pain or exhaustion. Some people are in so much pain they can think of little else. Some people are so exhausted they cant' get out of bed. Some people need walking aids because their balance would cause them to fall without it,

For some people, their intellect is hit hardest. Brain fog, although such a descriptor does it little justice. The degree of this impairment has been challenging to demonstrate because neurocognitive evaluations are blunt and not really targeted at our deficits. That's made even more difficult without premorbid scores to act as baselines for comparison purposes.

But some of us do have those scores, and some of us have had their intellect assaulted enough to have doctors repeatedly request a battery of neurocog tests. I've been sick for over a quarter of a century and i've felt my cognitive skills slowly erode. That sensation has been reflected in my tests. Since the year 2000 I've had five comprehensive neurocognitive tests and i've seen my IQ drop anywhere from 15 to 20 or more points. You are correct in that I'm not yet peeing in the corner of my bedroom, but I can assure you I feel my Stupid and it is an intellectual impairment.

More importantly, I am not alone. There are many like me. We don't engage as much because we are prone to mistakes, but some like myself try to participate irrespective of our deficits.

pwME who labor under the brain fog slight are a very real component of our community and it would be a mistake to not factor them into whatever algorithm you're wielding to characterize us.

 

[Turtle]

Thanks @duncan for explaining so clearly. I'm one of them too.
No major intellectual impairment, maybe, but your remark hurts @Jonathan Edwards .
Impaired most definitively. Feeling stupid; too often.
I wasn't tested as often as you were, duncan. Only once with 2-back, 3-back over a period of three weeks on good and bad moments.
Results were obvious. Not much brain left on bad moments.
I recently asked a neurologist about my brainfog, he didn't "do brains" that day.
I don't pee in the corner of my bedroom either, not all gone, but too often not all there either.

 

[Trish]

I do not know of a single case of someone with ME/CFS having major intellectual impairment.

Perhaps it's a different sort of intellectual impairment. For example, many members describe it taking over an hour to write a post of a couple of paragraphs. The post may be intellectually sound, but the effort required may be daunting, and only possible at all on good days. We also have a self selected membership, with those unable to think clearly at all simply not being on the forum, or not taking part in research discussions.

 

[Jonathan Edwards]

Perhaps it's a different sort of intellectual impairment. For example, many members describe it taking over an hour to write a post of a couple of paragraphs. The post may be intellectually sound, but the effort required may be daunting, and only possible at all on good days.

Yes, that is what I am talking about. I do not want to upset people but I think this is a fairly simple distinction and of crucial relevance to theorising about widespread brain inflammation. As I understand it people with ME/CFS have difficulty completing tasks just as someone with severe breathlessness from heart failure might, or someone with a nasty dose of glandular fever, or someone on morphine following a multiple injury car accident.

The point is that when inflammation or other damage hits parts of the brain indiscriminately, as in MS or Alzheimer's most typically, something very different occurs. Intellectual function and other functions like speech or vision fail in a qualitative way. The person cannot recognise their spouse or is blind or has no idea of normal behaviour.

Taking an hour to compose a paragraph would be entirely consistent with a problem in the hind brain or hypothalamus around centres that control attention and awakeness. A general difficulty with finding words would probably be too. If there are focal lesions scattered through brain based on damage then you get specific deficits - and they stay there for at least months. If damage is general you are simply in a coma.

What strikes me as interesting is that narcolepsy is an immunological disorder that just affects cells in one particular area in the hypothalamus region. As far as I can work out something equivalent could account for all the cognitive problems people with ME/CFS encounter.

 

[Utsikt]

During my first couple of years I destroyed my coffee grinder by pouring water into it instead of the water tank on the coffee maker. I also poured the water over the grinds instead of into the tank many times.

I’ve broken many glasses by dropping them, and I frequently forget what I’m doing and have to deduce it by what I’ve got in my hands or where I am. I have to use lists to remember tasks. I’m not able to study new topics like I used to. I can’t multitask to save my life. I sometimes have trouble understanding speech.

My neuropsych tests were still good. I’m never confused about time or who people are. I can communicate in my second language. I can solve difficult problems as long as they don’t require parallell thinking, and as long as I don’t have to do it all at the same time.

I still feel like me. I’ve just not got access to much of it at the same time. Something is clearly wrong, and something clearly isn’t.

 

[Jonathan Edwards]

I still feel like me. I’ve just not got access to much of it at the same time. Something is clearly wrong, and something clearly isn’t.

That is how it comes across to me.
Messing up everyday tasks is interesting because it might be considered the sort of thing that happens with dementia. But I do things like that at times, particularly if I am jet lagged or have not woken up properly or have woken up in a different place. I think it is reasonably plausible that they relate to some sort of brain stem arousal system like the reticular activating system.

In dementia the person does not learn their mistake. They pour the water in the coffee grinder the next day as well.

 

[duncan]

Some pwME have intellectual impairment. If anyone is going to characterize our disease, this fact in my opinion should be part of the characterization.

What should not be part of the characterization is saying there is no intellectual impairment among pwME. That would simply be incorrect and a mischaracterization.

 

[Utsikt]

That is how it comes across to me.
Messing up everyday tasks is interesting because it might be considered the sort of thing that happens with dementia. But I do things like that at times, particularly if I am jet lagged or have not woken up properly or have woken up in a different place. I think it is reasonably plausible that they relate to some sort of brain stem arousal system like the reticular activating system.

In dementia the person does not learn their mistake. They pour the water in the coffee grinder the next day as well.

I very clearly understand that what I’ve done is wrong. It just feels like my awareness completely blanked out for a moment.

That being said, I’ve spoken to several post-covid patients that had severe deficits at neuropsych evals from mild infections. They really, really struggled in a way that clearly didn’t happen before, and it just doesn’t go away.

 

[hotblack]

The intellectual, cognitive or whatever you want to call it impact can be huge. Far far more than making simple mistakes. It’s a significant symptom with associated impact and can be extremely unpleasant. Brain fog is a completely inadequate phrase to describe it at its worst. And it’s important we recognise that.

But another important factor for me, which may not be the same for everyone, and tbh I have a hard time remembering it when at my worst, is it has not been permanent for me. I have been in a dreadful state, but also come back from it. Maybe not fully but starkly and in a way that I don’t think people with other conditions mentioned are able to. I get the feeling that is what @Jonathan Edwards is alluding to? There seems to be a distinction. A barrier or blockage not a breakage.

My brain may be impaired at times but it does not seem irrecoverable.

 

[Utsikt]

At my worst, I’ve been unable to think. But I’m not that bad now. So it’s very unlikely to be something permanent in the brain. Rather, something is continuously sustaining a mechanism that causes my current impairments.

 

[Jonathan Edwards]

A barrier or blockage not a breakage.

It is partly that. It is also partly that people with ME/CFS have full insight into their problems -they struggle they find them unpleasant. When a bit of cortex is damaged you are often unaware that anything is wrong. And if you are you are often rather indifferent to the defect.

The intellectual, cognitive or whatever you want to call it impact can be huge.

That is not in doubt. It is the nature of the defect that I think may tell us something important. Maybe like still being under the effects of an anaesthetic, barely in contact with ones environment, but not a sign of focal brain damage.

 

[hotblack]

It is the nature of the defect that I think may tell us something important. Maybe like still being under the effects of an anaesthetic, barely in contact with ones environment, but not a sign of focal brain damage.

Yeah I see that. And mention of the hypothalamus is an interesting one. Certainly what I’ve been experiencing over the last few weeks and usually do when bad is on top of fatigue all around thermoregulation, hear rate, sleep, appetite, I notice shivering control is in there too which makes me wonder about the muscle twitches I mentioned too. Add in some memory and mood swings and anxiety perhaps linked to other hormone release (they have been laughably predictable in their daily cycle).

So then the question is do we think that specific parts would be affected in all people or would this vary? And if so, how would specific parts/functions be affected?

 

[Turtle]

It is partly that. It is also partly that people with ME/CFS have full insight into their problems -they struggle they find them unpleasant. When a bit of cortex is damaged you are often unaware that anything is wrong. And if you are you are often rather indifferent to the defect.


That is not in doubt. It is the nature of the defect that I think may tell us something important. Maybe like still being under the effects of an anaesthetic, barely in contact with ones environment, but not a sign of focal brain damage.

"struggle, unpleasant" You don't have a clue what that means in braingfog.
No it ain't broken, I think. But to call it unpleasant, to me feels like you're behaving like an elephant bull in musk inside a china cupboard.
I really so think you don't want to hurt anyone, but sometimes.....

Brainfog to me means I cannot prepare for DecodeME. How helpful other lovely members are in putting their precious spoons into insightful video's and papers, in me it won't stick. I have to read and see everything 20 times and then hope "something" sticks.
Any idea how painful it still is when I have to tell I can't use an I-phone? Once a final year uni-student and now a dumbo: That's brainfog to me!

 

[duncan]

We have so many symptoms, but there is no standard intensity with which we all experience them. We are all unique in terms of how each symptom manifests. This is true in terms of duration and frequency and intensity. It's true for what triggers PEM, too.

I think pretty much all pwME understand that, certainly those that frequent this forum. We know any given sufferer of ME may experience any given symptom differently than any other pwME. And it's a pretty much a given amongst the patient community that the entire symptom spectrum in ME/CFS works that way.

Cognition is one of these areas and I can't imagine it comes as a surprise that some of us are hit harder with cognitive deficits - and yes, to the point of impairment. Balance and PEM aside, I would not let me drive a car. My judgement is too suspect to put others at risk through my inability to reason how fast a car is coming in the opposite direction or how likely something is to happen, or infer from traffic patterns something may be amiss, or not get confused by the flood of essential driving cues that I can no longer absorb. This is an intellectual impairment just as real and potentially disasterous as driving under the influence is. I can list all kinds of examples that involve far less dangerous activities but which nonetheless have been transformed into something insurmountable because my brain can't process the way it used to.

Of course we've fellow patients who suffer with intellectual impairment. I think it would be more fantastic if we did not.

 

[Jonathan Edwards]

"struggle, unpleasant"

I was quoting words used by members in the thread. I cannot really do more can I?

 

[hotblack]

The use of unpleasant was me. I will often classify experiences vey broadly as pleasant or unpleasant. I suppose a third option would be neither.

 

[Jonathan Edwards]

I do not want to upset anyone over these terms. I was using them to make the point made best by Utsikt. "It still feels like me" and it still seems like "you" to others, however submerged or distant. The terms imply insight and it impresses me that people with ME/CFS retain that insight. As much as anything that is one of the strongest arguments for this not being a 'psychological' problem.

 

[Utsikt]

As much as anything that is one of the strongest arguments for this not being a 'psychological' problem.

Good point - I feel much more myself now that I’m bedridden compared to when I was depressed or troubled with anxiety, but otherwise healthy.

Although the BPS folks sometimes argue that you’ve just taken your perfectionism, catastrophising, etc. a few notches too far. So it still feeling like you just means that that «you» is at fault.