What is brain fog?, 2022, Smyth et al (incl. Alan Carson, Jon Stone)

Note: This is a poster presentation. The full paper is now published, and the abstract is posted in post #14.

Smyth H, Hoeritzauer I, Couturier A, et al, 25 ‘In a mist?’ – What is ‘brain fog’?, Journal of Neurology, Neurosurgery & Psychiatry 2022;93:e3.
https://jnnp.bmj.com/content/93/12/e3.18

et al = Jon Stone, Alan Carson, Laura McWhirter

The British Neuropsychiatry Annual Meeting – 27 May 2022, Members’ Poster Abstracts


Abstract

Objectives
The term ‘brain fog’ is increasingly used in social and other media. But what is brain fog? What sort of experiences do people talk about when they talk about brain fog? And, in turn, what might this tell us about potential underlying pathophysiological mechanisms? In this study we examined first-person descriptions of brain fog in order to better understand a) the phenomenology of brain fog, and b) the causal attributions of those describing brain fog. We use this information to consider implications for clinical research.

Methods Data were scraped from the social media platform Reddit using Python. Posts containing ‘brain fog’ were identified between 27thOctober 2021 and 3rd November 2021. Those not describing or discussing brain fog as a symptom or experience were excluded. Potentially identifying information was removed prior to analysis. We undertook thematic analysis of containing subreddits (topic-specific discussion forums), causal attributions, and discrete brain fog experiences.

Results 1663 posts including the term ‘brain fog’ were identified, of which 717 met inclusion criteria.

44% (315/717) posts originated from subreddits concerned with illness and disease: including COVID-19 (87 posts), autoimmune, functional, neurodevelopmental, major psychiatric, and endocrine disorders. Brain fog was also discussed in subreddits about prescribed and non-prescribed drug use, and subreddits concerned with intentional restriction of masturbation (‘nofap’).

141 first person descriptions of brain fog described overlapping concepts including: forgetfulness (51), difficulty concentrating (43), dissociative phenomena (34), perceived cognitive ‘slowness’ and excessive effort (26), communication difficulties (22), a feeling of ‘fuzziness’ or pressure in the head (10), and fatigue (9).

570 posts described a perceived cause of brain fog, of which half attributed brain fog to illness or disease (282/570) (the most common single attribution being ‘long COVID’ in 59/570 (10%)), followed by psychiatric conditions in 38/570 (7%). The second most common single attribution of brain fog, in 24/570 (24%), was restriction or excessive masturbation.

Conclusions Brain fog is discussed on the Reddit social media platform in association with a wide range of illnesses, diseases, drugs, and activities. The term is used to describe heterogeneous experiences, which do not map in a straightforward way to the domains enquired about during a ‘cognitive’ clinical examination, but include experiences of dissociation, fatigue, and excessive cognitive effort. Encouraging detailed description of subjective experiences – moving away from a psychometric testing approach and towards a phenomenological approach – might open new routes into understanding cognitive difficulties in health and disease.

http://dx.doi.org/10.1136/jnnp-2022-BNPA.25

 

One internet definition: "The approach investigates the everyday experiences of human beings while suspending the researchers' preconceived assumptions about the phenomenon".

I think this approach would be a huge improvement for one particular group of researchers.

 

this nonsense epidemiological approach to medicine needs to be stopped. trying to turn what can easily by a good psychologist be broken into different types of issues and demonstrated where it fluctuates with tiredness etc into some 'blob' of 'fog' or 'mist' is BS - I want to use a different word. Just so they can talk abotu everything as a blob because that is their business - turning all illness into a big statistical blob instead of doing science.

Calling the different types of cognitive dysfunction and issues 'fog' is like taking heart attack pain, arthritis pain and pulled muscles and calling it 'somatic' (which I believe they also are trying on). They are a shame on their subject area and making it what should be a laughing stock. Statistics are only useful if you can be accurate with the data in rather than have a mission to make it as fuzzy as possible (who has the 'fog' now) in order to make nonsense connections that don't stand up in order to overwhelm the agenda with 'research' that noone should be paid for and is worse quality than what a magazine would do as a voxpop on a celeb

I know both (science and stats) and their statistics are BS (want to use a different word), they make it a blob then use external varying factors and claim the links are the wrong way around when they find any. It's just devious nonsense the only reason they aren't called out on is because they weren't stupid enough to start by picking an illness like cancer then claim the longer they spend in bed or less they work the iller they are based on 'cancer' being compared to 'time in work'. Or trying to say those who do jobs where they are paid less (as a blob entity) must be due to not being able to drive, or being tired.

Why are people getting paid for spending time on useless, not fit for anything quality-wise output. A garage wouldn't pay a mechanic who couldn't/wouldn't (it doesn't matter which it is) run surveys properly to spend all their time pushing out rubbish claims based on fake and nonsense survey results instead of doing what they can well, that they do with expertise properly - so why do all this bunch get away with it.

Academics shouldn't still be paid if their research design and methods drop below a high school C grade and is useless, and that is all they do with their time - or they can't tell research based on that from good stuff. What they are actually doing isn't 'expert' then, no matter what their quals and job titles infer.

 

With that lot involved I bet they will claim that it is 'functional', no matter what they actually find.

 

Oh FFS, it's an absurdly inadequate and minimizing and condescending metaphor - one that should never, ever be used by so-called professionals as a lead for a serious study of decline in discrete cognitive domains. This is shameful.

ETA: I know YOU'RE not saying that @MSEsperanza .

 

This is basically turning into a running gag, but leave it bad physicians to notice a common medical problem, smack in the middle of their "expertise" but they missed entirely nonetheless, and find a way to argue that it must be whimsical and about other stuff, therefore probably not medical.

I guess they can't really imagine that people can cross-post in multiple forums. Nope, not a single neuron fired up about this obvious thing. They must imagine that people who are chronically ill can only post about chronic illness on chronic illness forums, or that everyone with brain fog would naturally go to those forums. Or who the hell knows?

Also it's not like it's common during many acute infections, after chemotherapy and after TBIs. Basically a very common problem that is so mysterious that some of the very people who sit at the nexus of expertise on this are so completely out of their depth that their first thought is to do a fishing experiment on social media, because they truly do not have a clue about this. Even though millions of patients have described this in the very terms they found for many decades, no doubt many times to them personally as part of their job. And this is brand new to them. Amazing.

The incompetence here is seriously offensive. It's the exact opposite of competence porn, watching experts do their expert thing expertly. Like a bad parody of expertise, except it's a documentary. Or more like a very bad reality show, it sure has the shallowness and navel-gazing of most reality shows out there.

Fake experts like this are a sign of a completely rotten system of expertise. The entire discipline of psychosomatics needs to be canned, serves no purpose.

 

Neuropsychological testing might reveal something about brain fog. Finding deficiencies might legitimize the term "brain fog".

 

I think to do it right they'd need baseline scores for patients (e.g. old IQ scores or MOCA scores), and those are not always readily available.

 

There definitely was, and may still be, an opportunity to have done such premorbid testing for Long Covid. It has been a major lost opportunity that a cohort of the general population was not tested for a range of physiological and neuropsychological base line measures so that retesting would have been possible for those that subsequently developed Long Covid.

With ME the sample sizes would have been impossibly large to do this, outside a pandemic situation, for the general population, though the prospective work on EBV in students has been promising, but at least to people with ME it was obvious from the onset that a significant percentage of the population would develop post viral symptoms during the pandemic.

 

Yes, it does feel voyeuristic. Worse, opportunistically voyeuristic. Creepy.

They're correct about the first bit, that "the term is used to describe heterogeneous experiences, which do not map in a straightforward way to the domains enquired about during a ‘cognitive’ clinical examination". Though we didn't need a creepy study scraping social media to work that one out. Brain fog, like fatigue, is simply shorthand for feeling crap in the brain, similar to how fatigue is shorthand for feeling crap overall. Both terms cover a multitude of things in everyday speech, they're not precise scientific terms and have never been intended as such, not by patients at least. That some researchers choose to pretend otherwise is a different story.

The second part, "moving away from a psychometric testing approach and towards a phenomenological approach", however, is ominous. It's highly unlikely this camp is going to be

Based on everything we have seen from them to date we have to assume that they will instead twist patients' descriptions to confirm the researchers' preconceived assumptions - and then add insult to injury by claiming they listened to patients.

Rather than moving away from psychometric testing - though how do you move away from something most people never get access to the first place? - this sort of testing should be refined and strengthened to hone in on the many components of brain fog. Ideally with expert patient input but well away from ideologically committed researchers.

A related point, I recently learned that some in the MS community use the term cog-fog instead of brain fog. It's still shorthand among pwMS for a multitude of cognitive problems but because it's less intuitive it's also less likely to be immediately categorised by healthy people as being the same as something they're familiar with, like just being a bit more distracted and forgetful than usual. Sometimes patients having to explain what exactly they mean with a term could be a good thing.

EDIT: I take back the bit I said about psychometric testing. I got mixed up with with neuropsychological testing. That's the one I want to see more of, not psychometric testing. Demonstration of brain fog in action

 

Agree 100%. The only thing this should confirm is that from a 'branding' point of view (in the almost literal sense as BPS are branding us):

when BPS push terms like brain fog by saying it continually in order that others tip-of-tongue it in place of specific terms (to the point a doctor will correct me saying cognitive fatigue in the specific to brain fog in the generic) they shouldn't claim this isn't a direct attempt to minimise the illness description now it is confirmed as something used by people who are in some sort of frustration to do with masturbation.

The very fact that term can also be used for that or understood as relating to that should be confirmation enough their 'chosen words' are by no means 'good intentions' or 'not a derogatory or misleading term minimising it' if they continue to do so (and do the same with other terms like turn PEM into post-exercise-fatigue) whilst pretending fake innocent face.

 

Merged thread
Full paper now published

Abstract

Background
The term ‘brain fog’ is increasingly used colloquially to describe difficulties in the cognitive realm. But what is brain fog? What sort of experiences do people talk about when they talk about brain fog? And, in turn, what might this tell us about potential underlying pathophysiological mechanisms? This study examined first-person descriptions in order to better understand the phenomenology of brain fog.

Methods
Posts containing ‘brain fog’ were scraped from the social media platform Reddit, using python, over a week in October 2021. We examined descriptions of brain fog, themes of containing subreddits (topic-specific discussion forums), and causal attributions.

Results
1663 posts containing ‘brain fog’ were identified, 717 meeting inclusion criteria. 141 first person phenomenological descriptions depicted forgetfulness (51), difficulty concentrating (43), dissociative phenomena (34), cognitive ‘slowness’ and excessive effort (26), communication difficulties (22), ‘fuzziness’ or pressure (10) and fatigue (9). 50% (363/717) posts were in subreddits concerned with illness and disease: including COVID-19 (87), psychiatric, neurodevelopmental, autoimmune and functional disorders. 134 posts were in subreddits about drug use or discontinuation, and 44 in subreddits about abstention from masturbation. 570 posts included the poster’s causal attribution, the most frequent attribution being long COVID in 60/570 (10%).

Conclusions
‘Brain fog’ is used on Reddit to describe heterogeneous experiences, including of dissociation, fatigue, forgetfulness and excessive cognitive effort, and in association with a range of illnesses, drugs and behaviours. Encouraging detailed description of these experiences will help us better understand pathophysiological mechanisms underlying cognitive symptoms in health and disease.

Open access, https://jnnp.bmj.com/content/early/2022/12/06/jnnp-2022-329683

 

The inclusion of Jon Stone amongst the authors doesn't fill me with confidence...

https://www.neurosymptoms.org/en/

 

I'm sure we've discussed this paper already? i cant find a thread but i remember the unsavoury aspects of it

 

thanks @Trish good to know i'm not going completely dotty