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My Brain Fog; What is Brain Fog ?
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Download the PDF here
Jules Levin, My Brain Fog: I try to explain what is my brain fog but its difficult for me to express & put into words, made because I have brain fog, but I found this published article on "What is Brain Fog". I know many older PLWH are having similar experiences. Some of the words in this article describe my feelings & brain fog, but it gives me a sense of being lost without hope and being invisible because no one talks about this and we get no support or explanation about whats going on, makes me feel no one cares about our aging situation. Where is the compassion for younger PLWH, is aging just a bunch of words? PrEP does not help older PLWH and the possibility of a cure does not appear soon or that it will save us. Not only are we not receiving any attention nor support from our HIV doctors, but our federal authorities - the NIH, ACTG don't address this problem & other aging/HIV problems like this. There is no discussion, no explanation, no research, no data collection. Why isn't our federal HIV leadership showing "REAL" attention to our personal daily living needs & problems, aging is essentially in so many ways ignored and marginalized by our HIV care infrastructure and federal leadership. Clearly it appears there is "AGEISM" here where issues for younger PLWH are more important and receive more attention.
What is brain fog?
'I don't feel like myself at all. My entire life seems off, as if I'm in a constant state of deja vu.'
'For me I am still able to be socially aware, yet am not able to socially engage fluidity like I used to its, like the cloud is a window that prevents me from having the same level of closeness that I once felt with others, yet can still pick up social cues and the energy in a room'
'Its like my brain is in dream mode.
'I feel like I cannot form words or say things right'
'... Unable to access simple words. Tonight, when picking up a food order, I could not for the life of me remember what I ordered. I knew what I had ordered but couldn't access the name'
'Can have a hard time recalling words of common things'*
'Issues finding words and occasionally even slurring of words'*
'I feel like I am a million miles away'
'Its like i'm sleepwalking'
'Its like my brain is in slow motion, lagging behind my body reactions
'I'm noticeably not as sharp-when someone asks me a simple question I really have to think hard'
In the cognitive neurology clinic we might sometimes see patients who complain not of brain fog but of 'clouded thinking' or 'cognitive clouding'.
Similarly, patients with disordered sleep, and those taking sedative medications might complain of feeling 'foggy'. And yet, we hear these descriptions without always inquiring further about what the cloudiness or fogginess really feels like.
In this study, we describe analysis of qualitative data describing 'brain fog' from a non-clinical setting-the Reddit social media platform, used by 52 million people daily, and containing 2.8 million topic-specific 'subreddit' fora. We aimed to summarise the phenomenology and stated attributions of brain fog as contained in discussions on Reddit over a 1-week period in October–November 2021.
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.
Results
A total of 1663 posts contained the term 'brain fog', of which 717 met inclusion criteria.
A total of 141 first person descriptions of brain fog included overlapping descriptions (figure 1 and box 1) of: forgetfulness (51; 36%)); difficulty concentrating (43; 30%)); dissociative phenomena (34; 24%); perceived cognitive 'slowness' and excessive effort (26; 18%); communication difficulties (22; 16%); a feeling of 'fuzziness', 'grogginess' or pressure in the head (10; 7%) and fatigue (9; 6%).
Discussion
What might a naïve listener think about when they hear the term 'brain fog'? One would expect them to understand that it is a problem, that it is caused by the brain, and that it is experienced in subjective space. A 'fog' might descend and lift in an unpredictable way; or might dull our perceptions. A fog might impede progress, or make us inefficient, so that we make smaller gains for greater effort and feel frustrated, incapacitated or hopeless. Alternatively, a fog might make us feel altogether disorientated. The images suggested by the term 'brain fog' are vivid, but multidimensional. The data here, collected from the Reddit social media platform, demonstrates that the experiences and circumstances in which brain fog can arise are similarly multidimensional. A range of quite dissimilar experiences can be described as brain fog. This tells us that we should not expect the experience of 'brain fog' to mean the same thing to all people.
In conclusion, examination of subjective descriptions of 'brain fog' on a non-clinical social media platform reveal rich descriptions of distinct and overlapping phenomena. Better definition and understanding of these symptoms is a necessary prerequisite in formulating research into underlying mechanisms.
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