‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 , 2022, Greenhalgh et al

Abstract
Objective: To explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19.

Design and setting: A UK-wide longitudinal qualitative study comprising online focus groups with email follow-up.

Method: 50 participants were recruited from a previous qualitative study of the lived experience of long COVID-19 (n=23) and online support groups for people with persistent neurocognitive symptoms following COVID-19 (n=27). In remotely held focus groups, participants were invited to describe their neurocognitive symptoms and comment on others’ accounts. Individuals were followed up by email 4–6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by people with lived experience of brain fog.

Results: Of the 50 participants, 42 were female and 32 white British. Most had never been hospitalised for COVID-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term ‘brain fog’; rich descriptions of the experience of neurocognitive symptoms (especially executive function, attention, memory and language), accounts of how the illness fluctuated—and progressed over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants’ search for physical mechanisms to explain their symptoms.

Conclusion: These qualitative findings complement research into the epidemiology and mechanisms of neurocognitive symptoms after COVID-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with their experience of neurocognitive symptoms in its personal, social and occupational context as well as specialist services that include provision for neurocognitive symptoms, are accessible, easily navigable, comprehensive and interdisciplinary.

Open access, https://bmjopen.bmj.com/content/12/2/e056366

 

One mention of ME.

"Comparisons have been made between post-COVID-19 syndrome and other post-infective syndromes of neurocognitive dysfunction. Infection with SARS-CoV-1,67 Epstein-Barr virus, Coxiella burnetii, Ross River virus,68 and Borrelia burgdoferi69 can be associated with similar impairments to concentration and memory, typically correlated with persistent fatigue, although the causality of this association has been disputed. This study was not designed to compare the symptomatology of neurocognitive symptoms in people with long COVID-19 to other conditions. However, the challenge of unpicking the aetiology of brain fog is illustrated by the example of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), where persistent difficulties with executive function, short-term memory, attention and word-finding are incorporated in the diagnostic criteria of both the UK National Institutes for Clinical Excellence,70 US Centers for Disease Control and Prevention71 and International Consensus Group,72 but where the cause(es) of these symptoms remain unclear.73"

 

Ugh. Bunch of hot air. How are clinicians supposed to do that when the entire concept of brain fog has been dismissed and ridiculed, still here with some nonsense about psychosocial woo? Those services don't exist and research has been blocked by BPS ideology. It will take years to build this expertise and the work hasn't even begun yet.

 

You've misspelt 'Greenhalgh', @Andy.

 

The first step to building that is to recognize the need for it.

 

Why is this is a thing worthy of mentioning in the abstract? It is why almost all people consult a medic, regardless of their illness. I wish medics and researchers shared patients' motivation to search for physical mechanisms.

 

Yes, why?
Indeed.
As do I. As do we all!
What is wrong with them?

 

Link to a Twitter thread by Greenhalgh about the study (compiled by the Thread Reader app so anybody blocked by her can read it).
https://threadreaderapp.com/thread/1493270105475665928.html

 

When you're a hammer, all you see is nails:

It obviously doesn't, in fact even the most basic understanding of brain fog makes it clear this is nonsense, but she went in with the intention of promoting the BPS ideology and she did just that. The "absence of confirmation by doc" is especially ridiculous, but she is a GP and this is her framing, so even though this is supposed to be about listening to the patients, she put her own thoughts and beliefs instead.

Is the confirmation by a doc social or psychological? Because I see nothing social here, but it must be added because psycho-socio-bio means all 3 parts of the dogma must be repeated at every opportunity.

No idea how that study is supposed to do that, other of course than knowing the BPS formula that she laid out in the other tweet I quoted. It will inform things by proposing CBT and doing the same old cycle of failure that made it impossible for medicine to even attempt to take this seriously.

Of course it seems that the obvious explanation of "jobs that require interacting with others" is a risk factor infection-wise, but I guess thinking about how infectious diseases transmit and applying common sense is too much to ask for a hammer.

 

Most of the twitter summary is okay but this part shows the BPS bias of the authors. They're already using causal language and talk about vicious circles and evoking vague mind-body mechanism.

Maybe brain fog has nothing at all to do with complicated biopsychosocial interplays and chain of events but is due to immune responses in the brain altering metabolism and blood flow. In an animal model there was also oligodendrocyte loss, which are the maintainers of myelin sheaths.

 

Nailed it.