Cognitive-communication difficulties in adults with Long COVID, 2023, Cummings (has ME/CFS control group)

Free full text:
https://library.oapen.org/bitstream...257318_10.4324_9781003257318-5.pdf?sequence=1

 

From the discussion section

It is good to read a study attempting to measure the language/communication deficits of Long Covid and ME.

 

Very grateful to Prof Cummings for emphasising these points, as I requested (my bolding):

“By the time they came forward to participate, they had already experienced considerable improvement of their cognitive-linguistic difficulties. If these same participants had been assessed several months earlier, it is likely that their cognitive-linguistic problems would have been more severe still. These same remarks apply with equal relevance to the ME/CFS participants in the study. Many people with ME/CFS are too debilitated by their condition to participate in research studies. Consequently, the ME/CFS participants who participated in the study are also likely to have milder difficulties than the ME/CFS population in general (but even then, their letter fluency performance was significantly weaker than that of healthy participants). It is likely that both groups of participants occupy the milder end of a spectrum of cognitive-linguistic difficulties which also has more severe manifestations.”

 

Very helpful caveats in there, I think.

 

Interesting. I searched on twitter and found this webinar scheduled for November 22:

https://ealthy.com/product/cognitive-linguistic-difficulties-in-adults-with-long-covid/

 

I speak slowly to hide the difficulty I have in constructing sentences at normal speed. In part this is word finding difficulties.

 

I think there is a major problem with the method of recruitment in this study - making it self fulfilling. No doubt people with Long Covid have cognitive problems but this is not the way to measure it. The idea that somehow it is dissociated from the fatigue of ME/CFS also seems dubious.

 

Does LC cognitive 'fatigue' negatively affect their gait, speech and leg muscles? I feel as though I've climbed a mountain after talking too much. My leg and arm muscles are exhausted/sore and I can barely stand up.

 

Indeed. I also think that the author needs to remember how tenacious and smart (ie in comparison to most of the 'experts' who believe they can give 'tips' in their little courses) most with ME are at learning to function at a higher level than their illness actually should allow them to by basically using all sorts of strategies.

More below. But the following plays into all of that.

But the other point to note is that there is a vast different between 'before and after the 'cliff'' for me. ANd that has varied substantially in how long I have before the cliff based on severity of ME. What I've heard some say about Long COvid (but don't feel well informed on) is that things like this can be constant - like lower-level constant rather than this vast difference between 'rested' then 'boom' after 10mins. Or for those milder then it could be many hours. Or even days - but then catch them in that cognitive PEM and it's a different matter.

So there is the comparing like-with-like issue in saying it isn't the same. It's the same old chestnut of needing to map PEM and 'where in their threshold' someone with ME is (as well as severity) to know what they are comparing with. Which is why the 'fatigue' is wrong (PEM is the condition so why didn't they measure it and mention it). And I link back to the 'iceberg being flipped' slides on the following video (Occupational Therapy by SolveME) - watch at around 17min.30 - to say here is our methodology issue still in all this: https://www.s4me.info/threads/solve...re-for-me-cfs-presentation.29520/#post-437280

I really do think these slides and communications making the most of these types of wordings to communicate how the paradigm has been wrong is a breakthrough if we can start linking to short versions of things like this everytime there is something public with comments that misses it on this one.

Some simple reasons on PwME not being like-for-like with LC due to 'experience':
1. They will have generally had a lot longer to get used to these and so you do what you can and learn in a convo to devote your energy to the 'bits that matter' or 'focus on the hard/relevant task and let the other words go' and know that slowing it all down is pretty key - try asking them a complex question though and it becomes more obvious because the 'load' vs the length of time short term memory can hold info means these bits don't add up so you actually see the limits.

2. We've had horrific bigotry, even those of us who think we've had not that bad a time there is no leeway. We had to learn to survive and cover etc - particularly because most of us would have been 'alone' ie covid has many people in a similar 'stage' to them to consult with and feel less unusual. Even when we want to it is not natural for us or probably even possible after all these years of training ourselves to be completely 'out' when you've spent decades getting used to your face being right or other things you don't even realise you do anymore

3. For us noone would listen and gaslighted and deliberately misinterpreted words we very specifically formed to describe things, and gave no leeway on cognitive deficits so we had to become clever at working out how to do it in a different way despite our limitations - society made us 'adapt to them' by basically bullying us about our disability instead of trying to seek to understand when we tried to speak they mocked it. We learned not to waste words, signs of 'dropping off the cliff', how to get micro-rest within a convo, how to 'work norms' in how you describe something by circumnavigating or using hands, diagrams or whatever to 'concept'.

It all depends how the conversation was done - if you have people with certain personalities they control the conversation and force words out of you etc. Others control the conversation and ask direct open questions - and you've no wiggle room round it to hide. EDIT* and some make it easy by 'working with' you. Depending on which of these the interviewer/converser is, you see the vulnerability more or less quickly as you take away all defensive/work-around tools we might reach for and employ.