Should We Have a Better Term than Brainfog?

To me it really did start off feeling like a fog. I'm pretty sure early on I googled "brain fog" trying to figure out what I was experiencing, not realising it was an existing term.

However as I deteriorated from mild to severe the cognitive impairment definitely manifested itself in different ways. Some of which felt experientially like a "fog" and some less so.

 

That said, I did even classify it into types of fog, based on my subjective experience of it.


1. Foggy Fog (Whiteout fog)
When you get the sense that's its hard to "see" or "find" your thoughts, sometimes accompanied by a sensation of kind-of-like a mist descending. You can still find your thoughts but it takes longer and takes intense focus. The farther you walk into the mist the thicker the mist gets and the harder it becomes to find them.

2. Wall of fog
Like whiteout fog but instead of allowing you to walk through it at exponentially decreasing pace, it descends rapidly and you get the sense that 90% of your synapses have "road closed" signs posted on them. If you try to push through it, 90% gradually approaches higher numbers, until you literally can't read words. It can often feel less like a fog and more like a solid wall. Only subsides with complete brain rest. Frequency can be reduced by varying cognitive activities, and spacing them out with lots of rest breaks.


3. Drunk fog
Kind of like whiteout fog but more intense because your thoughts are not only hard to find, but are also less rational, as if you are walking through a drunk haze. Accompanied by an intoxicated feeling like the world is swirling or underwater a little bit — not vertigo but very unpleasant, impossible to socialise coherently in this state.

[For me this one was caused by gluten and stopped happening when I stopped eating gluten. (I don't have coeliac and prior to ME had no problem with gluten)]


4. Spaced Dream
When your whole life feels like a spaced dream. It's like you're not connected to your surroundings fully, like your head is not fully connected to your senses. In other words, some level of fatigue-induced derealization. Even though it doesn't cause confusion or hallucination, it is deeply unsettling.


5. Background fog
Like spaced dream but a constant low-grade, subtle derealization, accompanied by mental sluggishness. You feel connected to reality but also not connected. Like you can experience reality, but only through a window.


6. Thundercloud fog
- a heavy cloud of mental fatigue that descends quickly and hits you, welcoming you into nothingness as you surrender to it and your eyes close. If you fail to surrender, it may morph into 1-3, and/or result in an adrenaline boost which makes you especially wired-but tired. A sure sign that you need to stop or PEM will come with a vengeance down the line.


7. Fog et it.
Why am I here again?
you ask as you put the bottle of ketchup back in the microwave.
... pour cereal onto a plate.
... Put toothpaste on your toothbrush even though you just brushed your teeth already

Basically when you're so absent-minded because of fatigue that you do silly things and forget what you're doing.

(It's when the fog ate your thoughts :facepalm : )

 

Agree and yes I always assumed the term came from assuming they should minimise what we described (to something close to hysterical woman exaggerating her ‘bit if a headache’)

it’s also a major issue because there are very different quite specific symptoms that happen in reaction to different stimuli or situations that we describe that just get rolled into ‘yeah brain fog’ ie we’ve spent years describing scientifically then medicine has been told to train us out if trying to do that to the point it’s his hard to remember because the abuse to stop us trying and tell us to shut up cos no one cares has been so effective

politics in medicine eh twenty years of being told and trained im undesirable and why can’t I learn to shut up

I just want their behaviour logged as that’s what their ‘treatment’ was - and I don’t believe there was any good intention really behind it any way just a spiel to try and get away with it, that I was designated from nothing I did or was just luck of draw when I was born and demographics/ face fits that the getting no care extends to not even been heard or seen or the notes GPs etc take supposedly to admin all this care and alotting of funds and demand and need as a population would be gerrymandered so it wasn’t ’a need’ but was allowed to be put down as something else.

of course now it’s obvious that not being able to wake your brain like you’ve full on concussion would get rejigged into something ridiculous and if they could get away with pushing it into mental health - which was then bringing in that term to demedicalise any symptom they could get away with separating off and saying was ‘just mental’ from the real dualists the bps . But of course not waking up after a bang in the head isn’t mental health so how did they get away with it for us?

I think we need to be careful how we describe these eg I get tip of tongue memory issues when tired and have to circumnavigate for the word but it’s plain obvious it’s utter exhaustion

as above my ‘fog’ feels literally like I’d had a big lead weight dropped onto the top of my head overnight and can’t wake my brain . NOT ‘muzzy headed’ like either a hang over or can’t think straight person.

This ‘fog’ comes with literally not being able to move body not feeling like or perception. Yet of course there is something interesting in what Jonathan says where eg you think is there reflexes in your legs etc , could you move if there was a fire (would still take twenty minutes of brain forcing and finding a way to get body to slide off bed) so there not lack of effort/wish or really messaging (I think you get a message back saying body parts can’t move) because otherwise I wouldn’t have dealt with it by knowing I’d have to set alarm ridiculously extra earlier the tireder I am eg 4hrs early wasn’t uncommon even for an already early start because forcing the body to move and mind to wake took so much . And I’m ‘out of it’ in a different way to what those looking from the outside at me would perceive because it feels very much like locked-in and not ‘can’t think straight /out of it’ in the sense your brain knows high level things like consent and stuff going on around me - sometimes you might go off to sleep but when not it’s not a ‘dream world’ bit as far as that higher level thinking

whereas brain fog pitches it as the opposite- like it doesn’t affect the physical but the ‘thinking straight’ bit. I

I might be too exhausted when I’m mildly cognitive fatigue (by comparison to the wake up in PEm type - where I seen not to wake up) ten mins into a conversation to keep taking on info , process it, reply and so I will be being taken advantage of if forced to reply at someone else’s pace of conversation - where you end up having to just ‘say words’ so get them out in your mouth. But that’s not a competency thing as those only seeing that situation often assume. Weirdly I can often process the info and logic of that whilst I’m seemingly ‘out of it’ in PEM

The 'solution' is in stopping that person taking advantage advertently (yes, you find out 'who people are' with this illness because some really do 'up their game' when they see you like that, where a small proportion adjust and 'do the right thing') or inadvertently (rarer, and harder to really believe other than them being so caught up in getting what they want you are an 'object' so it's sort of the same thing), and NOT in questioning our capacity - stop the people tricking us at our worst moment and pretending they 'can't do the adjustments' and interrupting them so we don't have any 'good moments' because we are being antagonised by stimuli with no long enough gap to recover.

There needs to be a new term that to my mind would be what the definition of safeguarding should be, but doesn't actually cover for us. We need protecting so if someone isn't going to behave and give us a chance to be well by leaving us alone for a few days with peace and comfort, or even longer if they've just put us through something (and multiply that depending on how long it has gone on for before), those people don't get to pretend that didn't happen then waltz in and take advantage. Just like you'd expect them not to try and section someone by going 'ahhhh see you got that question wrong' by getting away with wandering into the room of a normal patient 1hr after they'd had a big op with general anaesthetic then speaking really fast deliberately.

it’s all just branding from them some of which is innate from the people taking it on ie they assume we are idiots to start with so hear something different to what we are saying.

but it’s missing some interesting phenomena- it’s just all that dismissing has made it sadly so much harder for me to describe because of that instrumental conditioning I’ve had for decades of various reasons to shut up or feel silly or scared/vulnerable when describing it.

 

If I think of it like the video of the Ocado robots (groceries stored in Index system then order comes in and robots go to fetch items from correct ‘locker’)

then I think* I agree. It’s not that the items were put on the wrong shelf. Although sometimes I will say a phrase naturally but wrongly ie the word wasn’t quite right to the actual specific one I would have naturally meant if I was ‘on form’ but a ‘close enough on some aspect if meaning or sound alike’ . From what my psych degree back then suggested if nodes and how neural networks works this makes sense

sometimes I’m actively aware I’ve tip or tongue (or nowhere near) on the word or term I need so I have to actively think if a way to circumnavigate what I need to communicate like a game of taboo (where you can’t say ‘the word’ but have to describe it to be guessed by others) - which in itself I’ve got pretty pro at to the point people think it’s a part of my character , but must be huge energy drain in itself and you feel like you are high-wire tap dancing

there’s something incredibly hard about summarising too - whilst retaining the start and end of a sentence if you don’t say it fast enough, get interrupted, distracted can be a ‘classic ME’ where you feel you’ve gif an egg-timer when you are in communication on ‘holding that thought - it feels like the ability to read a paper or a few and then ‘gather’ that overview and analysis can be ‘spot on’ when the brain is firing moment , and yet no amount of work or workaround will get you there when it’s not so doing work means you are always making notes of the points you think of in order to ‘have those’ when you have your next good moment, and can combine them to the more big picture stuff and just say it simply putting your finger on the issue.

it’s very much at the communication end rather than the ‘big concept’ end and so capacity isn’t affected because I can feel my intuition is still ‘ in tact’ (it’s sort of interesting having this because it makes it obvious his thee processes work) having read the same stuff, just not the ‘explaining it’ and ‘sifting which info to talk on’ . I’d say it’s like still being able to get the right maths answer but not show the working or explain why - except there are times where my brain can be so tired that simple maths just counting if adding i feel my body and brain crumbling with exhaustion. Like how many tablets you need to order etc. then someone asks another question on top of it like ‘two extra days for bank holiday’ and that little sun being get to the end-able is blown. So very executive function vs working memory ‘time can hold info’ vs processing vs exhausting body and brain related.

 

I think it is probably an executive function disorder, if I could find the energy to recall what I read about it, I’d say why.
I think what is problematic for the wider world is that it’s intermittent. I have been very often accused straight out of lying, being manipulative, putting it on etc because one day I can work on something reasonably taxing and requiring some level of intelligence, and the next day I can’t write down a message properly or tell you when I’m free for a dental check up, no matter how long I look at-my diary.

I was once tested by a dr who asked me to do some basic mental arithmetic, and was tdId had no short term memory issues or concentration issues. 3 sums! On a day when I could do sums. He should have asked what I did last week, or had for dinner last night, I’d have had no idea.

If you display intelligence then you can overcome forgetfulness, if you can use words like voracious or pernicious then you can’t forget the word for table. If you can calculate percentages in your head, you can’t write down the wrong number repeatedly. Unless you’ve had a head injury or a dementia diagnosis, and are now “no longer able to think”. This is the way others see it, a binary choice, a stable state with no room for shades of grey, or tides and waves.

 

There have been remarkably few papers about this. The only one I remember of recent times was the one by McWhirter (in the LC context) which at least attempted to grapple with the problem, producing this table of descriptors and attempting to categorise them into domains:



My own does not fit neatly into this schema, though. Exploratory research, examining ME/CFS patients' experiences of brain fog, is badly needed.

 

Yes that doesn’t speak to me.

 

I remember in cognitive psychology they had terms for different types of ‘errors/failures’ in the sense of ‘tip of tongue’ being where you know which word you are looking for but end up at best with either describing it (circumnavigate) or getting something sounds alike or with a similar meaning or category.

for this reason I think cognitive psychologists in those areas should be able to sit down with lots of patients and gone up with a catalogue of terms and phenomena

I suspect some are indeed related to exhaustion in the sense those who’ve overworked on a peak work week might start making similar slips.

I think some are executive load where I can’t be sure it ‘just’ exhaustion and there’s not things like loss from having pain from light or aching joints along with your body telling you that you’ll need to sit down soon (all the things that would be a stop everyone I’m ill for norms but we’ve had to learn to disguise and get in with performing ) also drawing on that sane load. So closer to if you had controls having to work out when to take their hand out of the ice bath without getting looked down on for breaking social etiquette at the same time as remembering a shopping list or answering a question on how many pills you need for that month.

and then I suspect from the term fog they are really minimising the concussion-like one where you just can’t wake your brain to get your body to move at all. But eventually maybe after hours do but aren’t ’with it’ - and from the outside unkind people are assuming it’s just ‘feeling a bit foggy eh’ when actually it’s scarily serious. I can’t even get to my tablets to take them for hours even though the tablets not being taken will make that worse. It’s closer to feeling locked in but that’s still not the sept description of what it’s like being inside of it.

anyway these known terms being presented in one lecture gif things like air traffic control or other errors made such sense when they were all together. And because of how they then had different elements where the failure was eg recall vs input then it’s probably also useful at pinpointing useful clues to narrow down which bits might be associated with different things or downstream .

and of course they’d lead to more helpful ‘management’ because it could until any fix for the underlying at least point to adjustments

like don’t have music playing and ask us to work out the bill. and could indeed lead to experiments that would be less derogatory (just calling it all mental health and sssuming lectures telling people to ‘act more normal because it’s your own fault’ CBT ) but also able to show the time path of exertion impact

I think I get cognitive symptoms from physical (as well as physical symptoms) but not vice versa. Probably because it’s hard to be walking around without the sensory stuff. Or even talking has a physical element. But then there’s looking at things on a computer lying in bed if you’ve got sensory more controlled. And when what type and how long do these last are again potentially important clues if they are blueprinted

 

There are some aspects I haven't really seen explored elsewhere.

It's hard to recall examples on demand (brain fog!), but for instance I've had falls because I tried to take two consecutive steps with the same leg. Works if you're hopping, but not when you're expecting a leg to move forward to take over supporting your weight, and it doesn't because it's already busy supporting your weight. That lack of basic coordination seems quite unusual, at least in people who aren't off their faces on vodka shots.

One of the others is Do Not Compute, which occurs in dementia. You can't connect two things that are right in front of you.

So:

[Puts two slices of bread into toaster and pushes the lever down]

[90 seconds later]

"I can smell something."

[Pause]

"What is that?"

[Pause]

"Is it inside the house or coming from outside?"

[Goes and sniffs air outside]

"Weird that there's no smell outside."

[Goes and sits down]

[Smoke alarm goes off]

"Something must be burning"

[Pause]

"Bloody hell, it's in here!"

[Goes and looks frantically around hallway. On way back, notices black smoke puthering out of now-ruined toaster]

 

In the Wikipedia about executive dysfunction it says there has been neuroscience of dysfunction in the basal ganglia thing and frontal lobe. There is a large section on Parkinson’s. I also thought there was a trend of some medical types trying to link ME with ADHD and some theory that ME produces ADHD type attention deficit

https://en.wikipedia.org/wiki/Executive_dysfunction

 

They haven't spent much time listening to descriptions, then!

People with attention deficit disorders don't get the buffering icon whenever they try to walk and talk at the same time. They don't get the comprehension gaps that look oddly like early-stage dementia. They don't have the coordination and coherence of a drunk because they did too much yesterday.

[Typo edited out]

 

I was just thinking and it occurred to me that it’s funny I get word finding difficulties in my inner monologue. Does anyone else with an inner monologue get this? I was in the kitchen and I wanted to thingy the thing thing (wash the Tupperware lid) which was crazy because I could picture the items and action but couldn’t think the words.

 

All the time! The process of coming up with the name of the thingy is incredibly laborious.

 

I think it happens more often in my mind!

 

Yes.
I should have said, the process of naming the thingies is laborious if you feel the need to bother. Mostly, what goes on in the land of thingy things can stay in the land of thingy things.

 

With the whatsits

 

Brainfog is such a broad concept.

For me it can be anything from having a fuzzy head feeling with a headache, to being unable to form certain thoughts or endure certain stimuli without triggering PEM, to occasionally having a completely blank mind (blanking out and being thoughtless was a major theme of my experience of being extremely severe), to forgetting if I took that pill I just took a minute ago.

All of these things don’t necessarily co-occur and I would guess may be part of different mechanisms.