Long COVID: The impact on language and cognition, 2023, Cummings

It's a TV show so not meant to be representative, but there was a plot arc in Agents of SHIELD where a character who is a genius scientist is resuscitated after drowning and suffers brain damage. Over months you see the struggles in how it affected him, how he had trouble processing information and especially speaking. Huge troubles with word-finding, with making sense of thoughts, speaking incoherently.

I am not as severely impaired as I was at my worst. I am often still more impaired than what they showed that character suffering through. At my worst I was so much more impaired it barely compares.

TV show, yeah, not entirely representative. But still, it's supposed to show cognitive impairment from brain damage and it actually would be an improvement on my condition.

Everything depends on social/political validation. More severe levels of impairment can be perceived as trivial just because it lacks social validation that the person is not faking, or exaggerating, or whatever. People can lose the ability to read for months and there's unlimited ability to somehow pin this on imagined anxiety, or whatever. It takes years just to notice basic things, and barely at that. No wonder things haven't progressed at all.

 

I've had to scan through bits, so some parts in detail then back and forth due to how I am today. But, heeding the last paper had some concerns flagged that I will go back and look for on another read if I remember, this is needed stuff.

THe approach of history-taking and testing and noticing that someone can do confrontation-naming if you judge the srface-level did they get the word eventually hid the circumlocution needed that divided pwlc from controls seems finally what is needed. Rather than the going into it with pre-set aims of what to diagnose, looking to be specific and break down what has been lumped under unhelpful clinical terms like brain fog.

And the discussion on the fact that this could really help in employment, relationships etc by at least describing it and providing for adjustments and description of what the issue is and what needs people have - well I thought, that's what I desperately need when she said 'he issue being they can't advocate for themselves on it [for various reasons]' which is a sign I think they are on the right track here.

My only point of interest, although watching the path through the various studies so far and how these seem to build in depth and go back and fill gaps it might be looked into in future, was around the suggestion that whilst pwlc were not at work they didn't notice their cognitive and language issues as much as the physical - which then resolved and they returned and noticed the persistent nature of the cognitive. I flag this because physical exertion for me causes both physical and cognitive PEM - and different types of central or peripheral/specific exhaustion depending on what it is. And cogntiive exertion gives me cognitive PEM and exhaustion too - ie cognitive gets the double-whammy whereas I don't get shaky legs from thinking too much, or flashing lights or noise etc.

It took me so long to really get PEM - now I'm severe it is much more obvious what it is, for many years it was rolling and then suddenly I just couldn't move or wake and it wasn't as simple as tracing it back because you had so many 'exerted on PEMs' rolling on top of each other. And because being over-exerted, tired or in PEM didn't mean that you didn't get adrenaline or try and do a bit to get yourself going moments that conceal it all.

So whilst I wonder whether indeed part of the cognitive is 'it not being tested', and perhaps these people had kinder less 'combative' (to win) communication styles at home that were considerate of their issues, it could also be that the physical and cognitive exertion of returning is showing itself more in the cognitive because the physical is eiher specific to the area exerted or 'central' which affects the cognitive, or cognitive. I'm not doing a great job of explaining this but by cenrtal I mean there is definitely a 'I need to take a rest I've spent too long reading' and not being able to get back on it for days cognitive vs 'can't wake brain at all' which has similar performance effects but for different reasons and isn't a surprise when it happens because you know you can't function as you can't even properly wake and sit etc.

Anyway I'm glad if the plan is here to begin paper by paper to dissect these different phenomena and then explain them, given noone listens when we try and the exertion of trying to do such high complexity to those who want to be cynical of you when you are so impaired and it takes so much out of you seems to have bee n understood well in this paper.

 

On that note, as she mentioned that pathologists in this area could help by explaining the condition better - which is hard for patients to do, but also to be heard/believed on. But I have realised that she isn't actually one - so the classic question of whether there is actually such a thing as being able to get someone who works in that area who would be safe for a patient to see and would be capable of this crops up.

If I, or someone with long covid was looking for such an appointment, then would even she be able to actually point to something that exists - or an individual who could be capable of near this, even if beginning from scratch?

 

Thinking about it if there are functions that can come up with advice for different severities so that it covers those who are severe who have to speak to try and access essential goods and services then I’d like the charities and support groups and anything else to work with them.

It would be really useful/important to have some basic statements and instructions that wouldn’t be questioned re eg short phone calls for basic things like organising prescriptions through the different processes and pharmacies, centralised processes and GP-related end of things, or council processes/other services that take us inordinately longer and are too much energy for us to access so it acts as a barrier or makes us look bad and do on.

just simple things like how quickly we forget a question we had in mind to ask if someone distracts or how we are trying but don’t have the right word if the other person is in a rush

or processes that involve filling out forms or ‘just send a report’ and how much that takes out of us. And how as that is the case for all other activities we have if that is repetitive requests to do such things we might get one fine fast then take six weeks to recover and so ‘weekly reports’ are just impossible and we aren’t being rubbish or the problem gone away just because the solution destroys us/we can’t do etc.

I’m sure I can think of more examples but I can’t believe how impossible the world is and how there is nowhere that describes this for us and even if we had the ability and energy to try our voice would do a good job and people wouldn’t ignore yd and think we were ‘exaggerating’ etc