Brain Fog and Fatigue following COVID-19 Infection: An Exploratory Study of Patient Experiences of Long COVID 2022 Chasco et al

[Andy]

Abstract

Post-acute sequelae of SARS-CoV-2 (PASC) is a poorly understood condition with significant impact on quality of life. We aimed to better understand the lived experiences of patients with PASC, focusing on the impact of cognitive complaints (“brain fog”) and fatigue on (1) daily activities, (2) work/employment, and (3) interpersonal relationships.

We conducted semi-structured qualitative interviews with 15 patients of a Midwestern academic hospital’s post-COVID-19 clinic. We audio-recorded, transcribed, and analyzed interviews thematically using a combined deductive-inductive approach and collected participants’ characteristics from chart review.

Participants frequently used descriptive and metaphorical language to describe symptoms that were relapsing-remitting and unpredictable. Fatigue and brain fog affected all domains and identified subthemes included symptoms’ synergistic effects, difficulty with multitasking, lack of support, poor self-perception, and fear of loss of income and employment. Personal relationships were affected with change of responsibilities, difficulty parenting, social isolation, and guilt due to the burdens placed on family. Furthermore, underlying social stigma contributed to negative emotions, which significantly affected emotional and mental health.

Our findings highlight PASC’s negative impact on patients’ daily lives. Providers can better support COVID-19 survivors during their recovery by identifying their needs in a sensitive and timely manner.

Open access, https://www.mdpi.com/1660-4601/19/23/15499

 

[DokaGirl]

This "myth" annoys me. There are all these papers showing people aren't really getting better than the number of people actually recovering is really small and also papers saying they have no drugs and yet somehow this idea persists that people will just recover and they simply need some kind words along the way. Medicine is utterly failing Long Haulers and this idea is a big reason for it. In a decades time we might have half the population sick with Long Covid and at that point medicine is going to have helped end modern civilisation but just not bothering to do its job at all.

I agree with your point about assuming people will recover and just need "kind words along the way".

That's what I encountered regarding ME from health care practitioners with a caring bedside manner.

In our household we call this technique positive non-interventioinism (PNI).

PNI appears prevalent in regards to post viral conditions.

In fact, PNI is universally subscribed to, by many. At least in some situations.

 

[rvallee]

After years of seeing papers like this published, I don't understand why anyone bothers. No one reads this. Likely fewer people will read this than the number of people who have participated in its production. It adds nothing. No one learns anything. It doesn't produce useful information, doesn't even get anywhere after that.

All modern EBM and guidelines production ignores this stuff, they don't even bother with the actual substance of trials as it all gets mixed together, so it never actually does anything. It doesn't help us. Doesn't help clinicians do any better. It's far less substantial that what the patients write themselves.

It's like a parody of useless academia.

Providers can better support COVID-19 survivors during their recovery by identifying their needs in a sensitive and timely manner.

Is that it? Identify needs? And then what? How does that help anyone? Do the needful? This is mindless self-indulgence with far more serious communication problems than language barriers.

 

[Sean]

All modern EBM and guidelines production ignores this stuff,

All?

 

[rvallee]

All?

I mean specifically the process of creating clinical guidelines to be used in healthcare, like the NICE process or IQWIG in Germany. All they evaluate are trials, they don't look at any of this. There is far too much to begin with, and it doesn't really inform anything about how to treat the patients.

In the end this is the only process that matters. Nothing else reaches the clinicians who make decisions based on what they're told to do. And all the details about the treatments get lost, the recommendations are just generic this or that, CBT or exercise, do whatever.

Maybe this get a glance, I don't know. The IOM report was very exhaustive, but I still don't see how they could go through reading all of those meaningless papers and make some sense of it when they can't even do that reliably with actual trials. This is academic publishing for the sake of publishing stuff.

 

[Hutan]

I thought this was a decent summary of problems faced by people with ME/CFS (regardless of if triggered by a Covid-19 infection). I thought it was well and tightly written, conveying quite a lot of information in a short paper. Of course we know the problems, but it does present some issues that I think do need more consideration, things like the impact of people who are struggling with driving in a society where it is assumed that virtually every adult is able to drive. I think it is something that needs to be talked about more. How do we know if we are safe to drive? I remember one time when I thought I had no option but to drive even though I was not at all well, I stopped at a green light, and sat there for a bit trying to work out what I should be doing. The person in the car that drove around me yelled some unhelpful ideas.

First, approximately 60.0% of patients interviewed reported PASC impacted their driving. This has important implications in Iowa and other rural states where healthcare barriers may include distance to specialist care and few public transportation options.

Second, given their age range, many of our patients had children at home, with some also acting as caregivers to aging parents. Thus, the loss of their previous caregiver or provider role was two-fold and the impact on their household and extended family greater.

Third, in their study on physical activity among COVID-19 survivors, Humphreys et al. speak of patients “adapting to an altered life,” and reckoning with the potential for permanent changes, an idea our patients emphasized as well [25]. Future research is needed in this area to assess how best to support COVID-19 survivors.

I like that the authors included lots of very concrete examples of the impact. I do think that a doctor or other health professional who has read this article would get some ideas of what it's like to have ME/CFS.

For sure, there is that baked-in assumption that recovery will occur, and I guess a lot of their patients do recover. But, in that third point in the quote above, there is some recognition of the possibility of changes being permanent.

Unfortunately, psychosocial factors causing post-infection symptoms is mentioned as something needing to be researched. That's not great, although it might be true that psychosocial factors can lead to complications. For example, does not resting lead to worse outcomes? Does getting support to cut down to part-time hours at work immediately result in better recovery rates? Edit - does a lack of support increase the risk of mental health issues and suicide?

Other critical future avenues of research include addressing existing knowledge gaps in PASC by studying the underlying pathophysiology, for example, possible altered immunological function following viral infection, as well as the role of psychosocial factors leading to acute and long-term complications after SARS-CoV-2 infection. It is important to develop standardized diagnostic criteria to identify underlying risk factors, so that the condition can be prevented and treated in the future.

You might be right @rvallee, that hardly anyone will read this. But I expect the researchers who did this study learned things that they didn't know before, and no doubt they will present the findings in the media and to their colleagues. I don't think it was a waste of time.

 

[rvallee]

You might be right @rvallee, that hardly anyone will read this. But I expect the researchers who did this study learned things that they didn't know before, and no doubt they will present the findings in the media and to their colleagues. I don't think it was a waste of time.

I can at least imagine a near future where AI allows this kind of studies to be used when summing up the whole body of knowledge and trying to understand what the hell happened. So far it doesn't seem to have informed anything, though. I place it pretty much in the same category as the record the patient community leaves, it may have a future use. Just seems so pointless when there's so much real work to do right now and for the last several decades.

 

[Hutan]

Just seems so pointless when there's so much real work to do right now and for the last several decades.

Yes, it's a product of the huge yawning gap of knowledge about post-infection conditions. The researchers had to begin to understand what was going on, to build the foundation of knowledge on which further work can be built on. Perhaps they or their colleagues will then be in a state to make opportunities for more useful biological or social research. Perhaps patient charities in Iowa and elsewhere can use this report push for more support for people with Long Covid.