Brain fog, cognitive dysfunction

[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.

 

[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.

 

[jnmaciuch]

I think I understand what @Jonathan Edwards means here having had family members with dementia and lupus-related psychosis. There are certainly cognitive problems in ME/CFS, but I think the difference comes down to a particular quality of self-awareness and awareness of one’s situation that can be obviously lost in those other conditions.

Someone with ME/CFS may ill-advisedly get behind the wheel underestimating how tired they are, but I don’t know of a single story of someone with ME/CFS jumping in the car completely unaware that there might be some medical problem which makes this a potentially bad idea (unless they also had other comorbidities where this is common). My relatives with dementia, on the other hand, will insistently claim that they have absolutely no problems operating heavy machinery and that they just need to get to work for the job they retired from 20 years ago.

So yes, absolutely there are cognitive difficulties in ME/CFS and they can get extraordinarily debilitating. But overall I think the trends are still striking—in nearly every other example of acquired cognitive impairment, it would be basically unthinkable for someone to experience the level of difficulty completing cognitive tasks that many of us describe without also exhibiting that level of complete confusion, disorientation, and disconnection from one’s situation seen in dementia, autoimmune psychosis, etc.

 

[hotblack]

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.

Absolutely. I’ve also experienced both severe depression and severe ME/CFS and see them as starkly different experiences.

I think I understand what @Jonathan Edwards means here having had family members with dementia and lupus-related psychosis.

I think that’s how I was looking at it too. Seeing family or knowing people with various conditions which affect them intellectually and irreversibly in what to me feels different to what I see with myself.

 

[duncan]

I'm struggling with this arithmetic, so please bear with me.

On the one hand we have pwME, some of whom experience more pronounced deficits in intellect. But they don't disassociate, they don't hallucinate, their cognitive problems are more or less limited to executive functions, to things like math and writing and creative domains and logic and judgement and inference. For some in this group, the deficits can be profound enough to impair their ability to execute intellectual tasks they once tackled with ease, e.g., balancing a check book, multitasking, cooking without burning something on a regular basis, engaging in a conversation for longer than five minutes without losing its thread, etc. Their intellect is impaired and it impacts their QoL

On the other hand you have people who have full scale dementia, that confuse fantasy with reality, but who also have impaired intellect.

It appears to me that there is an argument being made here that suggests you cannot be a member of the first camp without also being a member of the second.

So, if I am understanding that correctly, we cannot be intellectually impaired because we aren't members of the gork crew ( a shout out to Grey's Anatomy fans)? To have cognitive difficulties so bad that it clearly derails your ability to live your life before ME onset, doesn't count as an impairment because you retain enough cognitive capability to actually be aware that you're truly screwed cognitively? I only cross over into gorkland when I become too stupid to realize how Stupid I've become, and when I start punctuating nonsensical sentences with droplets of drool?

Members here may be severely disabled and may have brain fog but their intellect is completely unimpaired.

My intellect is not completely unimpaired. It has been compromised. Calling it brain fog will neither reimburse me my lost 20 IQ pts nor enable me to talk smoothly and effortlessly with my neighbors about university choices or geranium woes.

I don't like this at all. But in this era of medical double speak, at the very least I want to be able to look in the mirror and when I see grey hair, confidently refer to it as grey hair instead of some metaphor that either softens the blow of aging, or blurs the truth altogether.

 

[Utsikt]

It appears to me that there is an argument being made here that suggests you cannot be a member of the first camp without also being a member of the second.

I might be wrong here, but it feels like you and JE are talking about two different things.

The way I understand it, «intellect» refers to your ability to understand and reason. But JE isn’t talking about the end product, he’s talking about the fundamental underlying processes.

If you’re in a lot of pain, you might not be able to solve a difficult test as well as you would have been if you were not in a lot of pain. But that isn’t because your thinking/reasoning-parts of the brain have been destroyed or changed. The pain is just muffling it, distracting, and so on.

For some pwME/CFS, the added muffling, distraction, etc. from many different sources is so severe that it substantially impacts their ability to perform even simple tasks.

People with dementia are also unable to perform simple tasks - but for a different reason. Their brain is literally breaking down. So they believe that they live in a different era, that they are talking to their long dead wife. Or that this is how a watch face should look when they are asked to draw them.

Spoiler: Watch faces

So while pwME/CFS might be extremely impaired, their impairments doesn’t match the ones you see in conditions where the brain has stopped working properly. Their brains ability to perform those actions is seemingly still intact, but something else is getting in the way. Their intellect is preserved, but their ability to use it is impaired. The motor works relatively fine, but the power isn’t getting to the wheels of the car for any amount of reasons.

That is not to say that poor sleep, lack of physical activity, little stimuli, etc. might not take a toll on the machinery of the brain. But that does not appear to be a part of the disease mechanisms of ME/CFS, rather it’s a secondary consequence of it.

 

[duncan]

The way I understand it, «intellect» refers to your ability to understand and reason

Agreed.

For some pwME/CFS, the added muffling, distraction, etc. from many different sources is so severe that it substantially impacts their ability to perform even simple tasks.

So you (and he) are suggesting our intellect is intact, but we have "distractions" that seem to inhibit or impede what would otherwise be a fine-working intellect? Have I got that correctly?

This seems unnecessarily convoluted. Wouldn't a simpler explanation be that something is causing the brain not to function as it did preME/CFS, and we don't know what that is, we cannot visualize it yet? But our ability to reason and understand are being compromised to one extent or another irrespective of the cause?

Do the underlying processes matter to the person whose cognition has eroded enough to impair reasoning and judgement etc., i.e, some pwME have impaired intellect? It seems to me the immediate issue at hand is whether there is some kind of acquired cognitive deficit at play, and if you're one of the pwME where there is, then you should call a spade a spade.

Words like brain fog apply to pretty much everyone at some time or another. It's just sloppy and minimalizing. Deteriorating cognitive skill sets - over time - conveys something different, and it does not refer to most people in the prime of their lives. Same with impaired intellect. The words we choose always matter to one degree or another, but when you're crawling around in contested disease quarters, they assume an even greater import.

I make far more mistakes when it comes to reasoning and understanding than before I got sick.. Those aspects of my life are, now, impaired. What is causing that? I don't know. Is it distractions like balance and neuropathy and headaches? Maybe. I don't know. But that lack of insight is immaterial to the end result of impaired cognition or impaired intellect. I don't need to know that cause to appreciate the end result.

Thanks for trying to explain. That was a kind thing to attempt, and I apologize if I totally mangled what you were meaning to convey.

 

[Trish]

Some people with very severe ME/CFS cognitive problems report that, for example, when trying a particular treatment, or when they have a temporary remission, their full brain function returns intact.

That is not the case in dementia, because parts of the brain are physically damaged.

That doesn't make ME/CFS cognitive dysfunction just a consequence of being fatigued, or being in pain, or of the stresses of being sick. The dysfunction can be very disabling and is outside the control of the pwME, but may not necessarily be either permanent or due to structural changes.

 

[jnmaciuch]

So you (and he) are suggesting our intellect is intact, but we have "distractions" that seem to inhibit or impede what would otherwise be a fine-working intellect? Have I got that correctly?

This seems unnecessarily convoluted. Wouldn't a simpler explanation be that something is causing the brain not to function as it did preME/CFS, and we don't know what that is, we cannot visualize it yet? But our ability to reason and understand are being compromised to one extent or another irrespective of the cause?

It seems to me like you at @Utsikt are saying essentially the same thing now.

Overall I think the point that is just that it is notable for many pwME to have severe difficulty with cognitive tasks, but to still retain the “awareness” that seems to slip away in dementia, cases of autoimmune psychosis, etc.

It’s just notable because it indicates that there must be different mechanisms governing these two facets of cognitive function, but they just tend to happen together in e.g. dementia. And that whatever causes cognitive difficulties in ME/CFS is likely not permanent structural damage.

[Edit: cross posted with @Trish]

 

[duncan]

Yes, to both @Trish and @jnmaciuch .

These observations may be spot on. Our deficits may be temporary, they may be rooted in different mechanisms than in other manifestations of cognitive difficulties.

All I am saying is that the cognitive deficits that appear in some pwME are cognitive deficits regardless. And unless I am missing some kind of arcane medical interpretation, they are impaired intellects regardless.

As others have alluded, we are pretty much saying the same things. The only thing I am disputing is anyone making the sweeping statement there is no intellectual impairment in pwME.

 

[Utsikt]

The only thing I am disputing is anyone making the sweeping statement there is no intellectual impairment in pwME.

As I mentioned perviously, I think that comes down to how you define intellect. To me, intellect is about the intellect machinery, not the end result.

To make an extreme point: a person that is fully paralysed didn’t become less intellectual even though they would fail all tests. The failing parts are further removed from the «intellect parts» than in ME/CFS, but in principle it’s the same thing that’s happening - the end product is affected by something else.

 

[Utsikt]

Intellect to me refers to ability or capacity, in particular the ability to reason and infer and judge. . Intellect machinery would I guess be the brain? You cannot have the first without the second.

The intellect machinery is probably just a tiny portion of the brain. In order for «you» to gain access to it, or for its outputs to result in an action or thought, it has to pass through a myriad of other parts of the brain or the rest of the body.

What I’m proposing is that the intellect machinery hasn’t been damaged. It just doesn’t have the required inputs or the outputs don’t result in what it normally would.

I get the sense many are reluctant to embrace intellectual impairment without some sort of proof of structural damage.

Not only that. There are also the observations I described in my previous post that just doesn’t fit with the picture we see with ME/CFS patients compared to other diseases where there actually is structural damage. If it doesn’t quack like a duck it probably isn’t one.

Nevertheless, there is always the bevy of abnormal SPECT results that have surfaced over the last three decades or so that support there's something amiss with the brains of some pwME. We don't appear to be getting enough blood/oxygen to our brains in some cases. Would that imply structural damage eventually? I would imagine so but who really has been looking that hard for that long?

If our brain slowly got damaged from having ME/CFS, people would not go back to their normal functioning when they improve. And ageing with ME/CFS would look more like dementia or parkinson’s, etc. It doesn’t. Which is a clear indication that something else is going on, something not permanent due to structural damage, but sustained by something else.

 

[duncan]

This is a fun conversation, but I am taking up too much oxygen in the room and for that I apologize and will stop..

I'm not sure much of the ME/CFS paradigm aligns with any known duck relative to many of its symptoms; this may also hold true for neuro aspects. There is precedent for this as well, namely in some channelopathies where clear cognitive deficiencies present, but little in the way of structural damage to the brain has been documented - at least as far as I am aware.

If our brain slowly got damaged from having ME/CFS, people would not go back to their normal functioning when they improve

First, most do not improve. Second, are we so certain all those that do truly revert back to premorbid levels?

I hope your line of thinking is correct.

 

[Utsikt]

First, most do not improve.

No, but the ones that do report that their cognition is better than at their worst. That implies that it’s not permanent damage to the structures.

Second, are we so certain all those that do truly revert back to premorbid levels?

They tend to say that they do as far as I’ve seen (although you’d have to account for age, etc. - nobody gets back to their peak if they’ve aged a decade or two or more).

This is a fun conversation, but I am taking up too much oxygen in the room and for that I apologize and will stop..

I enjoy the discussions as well. No need to stop, unless we’re just saying the same things over and over.

 

[Peter T]

(Sorry, I am struggling to word this such that it does not contain too many unintended assumptions/implications.)

The majority of cognitive issues reported in ME/CFS are non specific, that is they do not suggested any focal brain damage, rather they seem to reflect overall brain function such as attention span, reaction time, processing speed. Even things like memory issues or word finding difficulties do not necessary reflect damage to specific parts of the brain but emerge in many different conditions and brain states, including just being fatigued. These issues could be explained by something general such as impaired oxygen supply or low level toxicity of some sort, though I am not necessarily advocating for either, as they are any number of alternative explanations.

It is also possible that things that superficially seem like focal neurological issues, for example I now easily get lost, experiencing episodes of ‘jamais vu’ where I fail to recognise places I know well, the extreme now being I struggle to plan the route between my bedroom and the bathroom, so have to look through the other doors on the landing to find it, also reflect nonspecific neurological issues. At first glance this might seem to reflect damage to specific parts of the brain resulting from the ME/CFS, but it was something that did happen very rarely pre morbidly, at least on the one occasion, when a student, I got very drunk I got hopelessly lost in familiar streets. So it could be that this is somehow a vulnerability for me that only becomes apparent when my overall brain functioning is restricted in some way, which incidentally is now a regular occurrence with ME/CFS.

For the first twenty years of my ME/CFS I was confident that, should there be a ‘cure’, my brain function would return to approximate premorbid levels, as I experienced periods of intellectual clarity that lead me to realise both how impaired my ME/CFS norm is and that it was not likely to reflect any underlying neurological damage. However as I have fluctuated between severe and at times very severe over the last ten years, my intellectual capacity has declined and I no longer experience periods of apparent cognitive respite. Also my intellectual function has declined considerably over that period, for example even with ME brain fog I could read three or four books a week, but now it takes me over six months to read just one, which only happens when I am very very motivated. My ability to assimilate and organise larger amounts of information in the first two decades of my ME/CFS was relatively unimpaired and I was able to edit and write fairly long factual pieces, but now this post is pushing me to the edge of my ability.

So I am no longer confident that, even allowing for normal aging, I have an intact underlying neurology to return to should ME/CFS become treatable. Though in the first two decades my cognitive issues were best explained by something general such impaired blood supply rather than any loss of grey or white matter. However, I can not say the same with confidence for the last decade, and now my symptoms do not rule out some loss of ‘those little grey cells’.

 

[hotblack]

those little grey cells’.

I do enjoy Poirot (Although the audiobooks these days)

 

[Jonathan Edwards]

The cells are actually invisible - or when visible in a dissecting microscope, transparent. The greyness arises from the optical effect of an aggregation of cells.