Brain fog/ cognitive dysfunction

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How would you describe your brain fog to others?

For me, it feels like both information overload and my mind being empty at the same time. It sounds weird, because they're two opposites, but that's how it feels to me. Like my mind is both over-full but empty.
 
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Difficulty thinking. Thinking requires more effort, is slower, is interrupted frequently by losing attention. Sometimes formulating clear thoughts is not possible (this particular problem is I suspect what is really meant with "brain fog"). The effort of thinking becomes painful over time.
 
Tumbleweed - without the tumbleweed.

(of course there are 'degrees' within that - there are more than several types of brainfog - but they all, broadly speaking, have roughly the same effect on thought as being smacked in the head by a train. I speak from experience, having been smacked in the head, by a train, whilst crossing some tracks, after which I was more mentally functional than I am with brain fog - but the stunning is very similar)
 
Brain fog: what it is and how to get rid of it

Dr Sarah Jarvis
GPs have long been used to hearing the term 'brain fog' from patients, even though it isn't a formal medical condition. But in the last two years brain fog has become a hot topic, and one that patients are increasingly asked about. That, of course, is courtesy of long COVID, which is now affecting about 1.8 million people in the UK. But ME/CFS (which used to be called chronic fatigue syndrome) and menopause, along with other conditions, can also lead to similar symptoms.
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https://patient.info/news-and-features/battling-brain-fog
 
A meretricious article I read recently about the impact of smartphones on human attention spans used “brain fog” to describe momentary confusion. If the term is overused and overextended, pwME will need to find new ways to describe serious cognitive deficits.
 
Shadrach Loom said:
A meretricious article I read recently about the impact of smartphones on human attention spans used “brain fog” to describe momentary confusion. If the term is overused and overextended, pwME will need to find new ways to describe serious cognitive deficits.
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It is a terrible term anyway as an official/proper symptom. One thing if patients or someone experiencing something wants to use it in attempting to get across what they are feeling - but any medic should be being pushed to then ask more precise questions in order to determine 'what type'.

Here should be the test of how broken they've made the system: could they tell Carbon Monoxide poisoning due to a broken boiler from someone who needs CBT to 'behave more normally cos you must be thinking wrongly' - given that is where most are being sent. And other basic medically necessary stuff.

One thing I have always found pretty astounding is that whilst with other symptoms you are expected to go in and it is made more precise by specific diagnostic questions, the absolute opposite is true of cognitive symptoms in a medical setting.

And it has become worse - I suspect because those in the profession have been given the very specific message of 'don't touch if there is anything that even might be 'mental at all'' even though it is cognitive rather than mental health. This has obviously come from the move towards throwing things like alzheimers under mental health and then claiming it is 'anything mental' rather than the previous definitions.

What those following this 'protocol' are I assume not told (or are either given no choice, or ...) is that the supposed 'experts' they send people off to don't check, and bucket things based on whatever words are put down.
 
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Speaking of the name... this is actually a problem. Brain fog is unlikely to be a simple process, a single thing about a single molecule or protein. I'm not even sure if there is a good way to physiologically define it at all, even when understood.

So it's unlikely to ever be given a name under those conditions. Likely why it hasn't. It probably falls more under the symptom category, basically what medicine understands the least and where names are fluid and used in weird ways.

This is a serious problem. Things not given a technical name aren't taken seriously in medicine. I'm not even sure if there's a way out of this, it's another one of those things that should at least fall under a plan B, except there's no plan other than plan A: pathophysiology or bust.

And it should technically fall under neurology, who are absolutely awful at this stuff.

Oh boy best not to think about this... Ugh.
 
Maybe we should stop using the term 'brain fog', and actively discourage its use? Maybe it should be 'cognitive dysfunction', and/or more specific things like 'I have times when I can't think clearly'; 'I have difficulty making decisions'; 'I have trouble finding the right word'; 'I feel overwhelmed when I have to deal with multiple things at once, in a way that I did not before'.
 
Hutan said:
Maybe we should stop using the term 'brain fog', and actively discourage its use? Maybe it should be 'cognitive dysfunction', and/or more specific things like 'I have times when I can't think clearly'; 'I have difficulty making decisions'; 'I have trouble finding the right word'; 'I feel overwhelmed when I have to deal with multiple things at once, in a way that I did not before'.
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I'm in favor of that. Cognitive impairment/dysfunction or examples of things you're unable to do will be taken more seriously.
 
I think there's also a problem with saying things like 'I have times when I can't think clearly' or 'I have difficulty making decisions' etc. These are all things that healthy people can say, 'I get like that too sometimes'.

People with ME/CFS cognitive dysfunction need ways to explain in a few words how different and disabling their cognitive function is to normal fluctuations in concentration etc.

I think the important bit in Hutan's suggested list is to say 'different from what I experienced before' and to be specific about how disabling it is and what level of function it involves, eg 'I can't study like I used to - I can't retain what I have read and can't concentrate on reading for more than a page', or I used to be able to multitask - eg reading a scientific paper while cooking dinner. Now I can only read the science in tiny sections, and need to be lying down undistracted to do so, and I forget how to do simple things like ...
 
Apologies for repeating what others have already said - started writing this yesterday then 'fogged out' - 'fraid I can't parse what I wrote to fit preceding posts:


The particulars of Brain Fog:

With the term ‘brain fog’ becoming a commonly used phrase in other medical context and in general usage with increasingly non specific and/or contrary meanings, PwME and ME/CFS advocacy and research need to find alternatives so that in ME/CFS it can be ‘retired’ having lost useful specificity.

There doesn’t seem any readily available one, two or three word alternative that covers the totality of ‘brain fog’ but that is perhaps no bad thing. Being able to describe all the elements of brain fog is useful for research but also valuable for individuals when dealing with clinicians and vitally when claiming sickness benefits for which ‘brain fog’ was always lacking as a convincing description of disability.

As a general description, words such as fuzziness, haziness and miasma might serve as way of introducing the concept of ‘brain fog’ but specific disabling symptoms that make up the fuzz, haze or miasma are the important things to have recorded. The exact mix will be different for every PwME, and probably vary over time but having a full list is the key thing, and will perhaps include:

1. Visual impairment:

a) depth perception

b) movement perception

c) spots, stars, gaps, in the field of vision



2. Cognitive impairment:

a) memory for spoken words

b) dyslexia

c) dyscalculia



3. Proprioception impairment:

a) peripheral fuzziness

b) clumsiness
 
CRG said:
Apologies for repeating what others have already said - started writing this yesterday then 'fogged out' - 'fraid I can't parse what I wrote to fit preceding posts:


The particulars of Brain Fog:

With the term ‘brain fog’ becoming a commonly used phrase in other medical context and in general usage with increasingly non specific and/or contrary meanings, PwME and ME/CFS advocacy and research need to find alternatives so that in ME/CFS it can be ‘retired’ having lost useful specificity.

There doesn’t seem any readily available one, two or three word alternative that covers the totality of ‘brain fog’ but that is perhaps no bad thing. Being able to describe all the elements of brain fog is useful for research but also valuable for individuals when dealing with clinicians and vitally when claiming sickness benefits for which ‘brain fog’ was always lacking as a convincing description of disability.

As a general description, words such as fuzziness, haziness and miasma might serve as way of introducing the concept of ‘brain fog’ but specific disabling symptoms that make up the fuzz, haze or miasma are the important things to have recorded. The exact mix will be different for every PwME, and probably vary over time but having a full list is the key thing, and will perhaps include:

1. Visual impairment:

a) depth perception

b) movement perception

c) spots, stars, gaps, in the field of vision



2. Cognitive impairment:

a) memory for spoken words

b) dyslexia

c) dyscalculia



3. Proprioception impairment:

a) peripheral fuzziness

b) clumsiness
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Agree with all this, but the definition of cognitive impairment might helpfully include something about disproprtionate and disabling consumption of energy.

Personally, I might possibly catch a ball or emerge onto a fast-moving carriageway as a one-off, but sustained performance would degrade very quickly, and I would suffer PEM later on, so I have learned to avoid anything involving visual-spatial cognition.
 
Shadrach Loom said:
Agree with all this, but the definition of cognitive impairment might helpfully include something about disproprtionate and disabling consumption of energy.

Personally, I might possibly catch a ball or emerge onto a fast-moving carriageway as a one-off, but sustained performance would degrade very quickly, and I would suffer PEM later on, so I have learned to avoid anything involving visual-spatial cognition.
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Yes didn't mean my list to be prescriptive - just an example of how we might think/talk differently about what we mean by brain fog.
 
For informative purposes when discussing ME/CFS, the term “brain fog” should include a description of the collection of symptoms that make up the term for pwME, such as;

  • Reduced mental acuity and cognition.
  • Feeling confused or disoriented.
  • Slowed thinking.
  • Loss of short and long-term memory.
  • Inability to multitask or concentrate.
  • Reduced executive function, causing the inability to keep up with your day-to-day tasks, work, childcare, household chores, simple instructions, etc.

“Brain fog” is used for other physical conditions, so it might be helpful to highlight that during advocacy to demonstrate terminology is being used in line with a physical illness.
 
I personally find that the analogy of a slow computer is the most easily understood.

Take a very slow, bloated computer. Slow CPU, not enough RAM, clunky-ass hard drive, a video card that can barely color-fill a single circle. It's all choppy, everything lags, takes too much time to do every small thing and they all add up so sometimes the whole thing freezes up for a bit. At least this can serve as a good demonstration to people, easy to set up, easy to show, easy to understand.

Everyone is familiar with this, how awkward it becomes to try to use input when the response to using it lags behind erratically, pointer jumping around and keystrokes sometimes not responding, then all at once with missing keys. It still works, you just have to be constantly patient with it. Of course it's not practical and it doesn't make sense to try to work this way, it's barely usable, which can be OK to check the weather and email, but it's not acceptable performance beyond that. Certainly wouldn't be serious as a work computer.

Still doesn't work out a better name. But being able to explain it in a relatable way is certainly improvement over being stuck at having to summarize something complex with a brain that is no longer able to do this because it keeps running out of memory to process things. It technically works, just doesn't have the performance level to be usable, lacking in advanced features.

It doesn't really account for loss of executive function but computers don't even have that so whatever.
 
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