Should We Have a Better Term than Brainfog?

Someone pointed out that "brainfog" sounded like a trivial symptom. It really doesn't convey how much the symptom affects our lives, or the fact that it doesn't just go away the next morning ... or the next year or next decade. Something like "Brain crippling" might get a more appropriate response. Maybe someone will come up with a really good term.

"Fatigue" doesn't get much respect either. Everyone is familiar with regular fatigue that goes away with rest, or they might be familiar with regular fatigue from overworking--and expect it to go away at some point in the future--so it's not a "serious issue". I don't have any good suggestions, but it certainly can't help funding for ME research if our chronic symptoms are trivialized.

 

I use "cognitive issues" and if needed a more specific description like "short term memory issues" and then if needed, for example a description for a medical professional to emphasis the point, I might add "if I take a pill, sometimes two minutes later I can't remember if I have taken it so use pill organisers for time of day and day of week."

 

I don’t think people will take us any more or less seriously if we have a more relatable word. I am however interested in what people feel when they have brain fog, because I think we might have slightly different experiences!

 

Brain fog for me is feeling painfully muddled, struggling to hold information in my head, struggling to work through a simple problem, my mind going blank, struggling to read something - all of these are things I understand to be executive functions. It’s also a feeling that I can’t settle but am very tired, I’m irritable, but I’m not apathetic or depressed and I want to feel motivated but the fog is in my way. I have a feeling of head pressure, which I have come to realised is more of a headache than just pressure.

 

I prefer "cognitive problems" over "brain fog". What I experience seems similar to what @Haveyoutriedyoga describes, it seems like my brain doesn't have normal power anymore as if from one day to the next my brain aged by 90 years, but more importantly than exchanging one term for another, which is unlikely to ever do anything, be it "brain fog", "cognitive issue", "neuropsychological deficits" or whatever, would be that someone actually investigates what these different cognitive symptoms are that people are describing and if they can be meaningfully characterised in some way or if they are entirely heterogenous.

 

I say cognitive dysfunction if I’m talking to an adult.

 

I, too, prefer 'cognitive problems' instead of brain fog. I've never been able to relate to feeling like I'm going around in a fog; I tend to think it as 'brain farts', because it feels like something 'misfiring', rather than feeling 'foggy'.

 

Sometimes I know the thing I need to think of is “over there” in my brain, but I can’t get to it. More like a frosted glass screen has come down, so Ican see the “fog” analogy but it’s infantile.

edit spelling

 

For me brain fog is more than just memory problems. It is more like the indexing system for information I once knew has had random index cards removed and/or shuffled, and the information I want can't be retrieved because the index is corrupt.

 

My sensation exactly.
I feel separated from the actual world that I know is just 'over there'. It's so near and yet so far., like trying to grab a slippery fish that keeps getting away.

Added.
As @JohnTheJack said in an interview way back in 2019, "I just want to clear my head ... I just want my head to clear ...".
I remembered this a few minutes ago as I concentrated on what exactly my head felt like in the moment. It felt as though it needed to be flushed out to get rid of the thick sludge preventing immediate, sharp access to it.

Brainfog seems a rather inadequate term

 

Similar issue in Norwegian language?

https://www.s4me.info/threads/news-from-scandinavia.647/page-95#post-526025

 

Feeling separated from the world happens sometimes when people disassociate.

NHS says:

I have read about this because I think occasionally I experience it, and other sources gave more examples which I related to more closely, I'm afraid I didn't save the sources. I also learned that if you have either of these experiences it does not necessarily mean you have a disorder, and can be associated with fatigue etc.

 

I don't mind brain fog if it's used for that feeling that one's cranium is stuffed with something, rather than all the cognitive difficulties. Long before I heard the phrase "brain fog", I'd say "my brain is full of cotton wool". I also feel there may be some utility in "malaise" to describe the feeling of being very unwell, which is separate from all the co-existent describable symptoms.

 

Same here. It's like standing in the middle of a massive library, in the dark. You know the information is there, you might even know in which book, but you can't see it in front of you.

 

I don't have cognitive issues when I'm well rested. It only begins when I start overexerting myself. In fact my cognitive issues only started after I started exercising in 1998, seven years after initial ME viral onset.

 

"Mental trötthet" = "mental fatigue" is a common medical/scientific word for it in Swedish, in the context of traumatic brain injuries, stroke etc. They used to call it "hjärntrötthet" = "brain fatigue", which is still quite common too. (But "trötthet" literally means "tiredness"...)

https://www.gu.se/en/research/mental-fatigue

Among pwME most people still use "hjärndimma" = "brain fog".

If I have to describe it to a healthcare professional I usually call it "cognitive fatigability and memory problems".

 

In the UK if you say ‘memory issues’ to a sceptical doctor they can tend to dismiss you because they think “well you remember that you forgot something, so it can’t be that bad”, and “we all forget things from time to time, or when we are anxious…” comparing it with the sort of memory loss people with Dementia experience where they have no idea they have forgotten something.

Not all doctors, of course.

 

Sometimes I find it useful to use other terms eg when explaining the issues to HCPs, DWP, some friends etc.

This is from MEpedia:
https://www.me-pedia.org/wiki/Cogni...,information, difficulty sequencing words and

Cognitive dysfunction or cognitive impairment is a symptom in most diagnostic criteria for ME/CFS; some patients call it "brain fog".[1][2] It is also a common symptom of fibromyalgia which many patients call "fibro fog."[3]

Forms of cognitive dysfunction commonly found in ME/CFS include reduced attention span,[4][5] brain fog/cognitive fog,[1][6] cognitive overload,[6] concentration problems,[7] confusion,[7] difficulties with calculations,[6][5] dyslexia (or linguistic reversals) when fatigued,[7][6] difficulty absorbing information,[7] difficulty sequencing words and numbers,[7] multi-tasking problems,[8][7] planning problems, poor working memory,[6][7] reading or speaking difficulties,[6] short-term memory problems,[7][6] slowed thought,[7][6] spatial disorientation,[5] slow processing of information[7] and word-finding problems.[7] A 2016 study found that IQ scores of adolescents with CFS tested lower than the IQ scores of healthy peers with an equivalent school level. Currently it is not known whether lower IQ outcomes are due to concentration problems, a lowered processing speed or the illness itself.[9]

 

For me it makes basic thinking a challenging task; something I have to make extra effort to do (and don't feel like doing). Haveyoutriedyoga's description pretty well fits mine, except I don't think it makes me irritable. No, even trivial hassles make me angry, so I suppose that fits too. Just yesterday I was thinking about how it feels like wearing a too-tight helmet, and how the longer it's there, the more of a torture it becomes.