Discussion in 'BioMedical ME/CFS Research' started by John Mac, Jan 23, 2021.
I've not read the paper but this seems counter-intuitive to me.
‘A common symptom’: I have not checked which clinical definition they are using, but surely PEM is a core symptom, and if they were looking at people who did not have this symptom, not all their sample had ME/CFS.
I think a Melbourne imaging study of teenagers with ME/CFS found the same result (Sarah Knight was involved). People with ME/CFS are working harder to achieve similar results as those of people without ME/CFS. It's not sustainable - eventually they won't be able to keep up the quality of the performance, but the observation period probably wasn't long enough.
I get visibly weak after long sustained mental activity. This seems very unusual to me. It doesn't make any sense that my limbs would lose strength, my gait become slow and insecure when all I did was mental activity. I also don't feel well in these circumstances but nothing too bad.
This only means their measurement of cognitive performance is inadequate. I can't say for the rest but this is a huge flaw and huge flaws are not very encouraging as to the validity of the rest of the study.
Also why restrict to those two parts? Makes no sense to make such a decision without a valid reason.
This may illustrate floor/ceiling effects in the cognitive tests used in study conditions.
For example I suspect I would score above average or average on a relatively time limited reading task, even though I have only managed to read one entire book in the last six years and that took me over six months. Pre ME onset I would read between four and six books a week even when working long hours in a demanding clinical and managerial post.
Here's the study I mentioned:
Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev
It gets complicated, there are lots of things potentially being compared. I'm not up to sorting it out just now.
Has anyone been able to access the full paper?
PEM induced by cognitive exertion is underexplored, or should I say it's even more underexplored than PEM induced by physical exertion so research into this is welcome.
Unfortunately, based on the abstract alone, it's hard to tell if they're looking at PEM-proper or at cognitive fatiguability (which is common in many other conditions, just ask anyone after a stroke or traumatic brain injury). Of course it's still worthwhile looking at cognitive fatiguability but it would be helpful if people made it clearer which of the two phenomena they're investigating.
It would also be useful to look at some disease controls at some point, anything where patients also complain of vague cognitive symptoms and brain fog would probably be suitable. Just to see if we're looking at ME-specific findings or something more general.
The abstract does mention there was an increase in pain as well as fatigue.
Yea I get this kind of PEM a lot, probably more often than physical PEM, good that they are starting to look into it.
I think it is important not to confuse cause and effect.
If there is increased afferent signalling, why wouldn't we expect increased salience network activity?
This may be necessary to maintain increased concentration during a cognitive task and it is that increased effort that is often perceived as fatigue.
Yeah, but they didn't specify what sort of pain. The fatigue and headache combo after cognitive exertion is not unknown outside of ME. Plus they didn't say how long the symptoms took to resolve. My guess is they measured soon after the exertion but impossible to tell from the abstract. Guess no point speculating until we can read the full paper.
How long after the exercise did they assess cognitive function ?
Here it is much worse with PEM, but that may be 48 hours later
A problem I have is that when I am talking to medical professionals I sound much, much better than I really am. It is completely involuntary.
I call it being full of adrenalin though I don't know if that is what it is. It is the same effect as when I visit my grandchildren or go shopping (rare occasions!), I can't manage anything without it.
Byron Hyde says that he finds his patients are bright when he first sees them but after a few hours they start to fade. I doubt that these tests are long enough to counteract the adrenalin needed to do the test in the first place for many people with ME.
‘Start to fade’ is a good description. If I attend a social event, either of 2 things can happen. Either I start to fade when everyone else is still raring to go or I don’t fade at all, but when I get home and go to bed the adrenaline is still coursing through my veins and I can’t switch off and go to sleep, so I’m exhausted the next day. The worst thing is if I try to carry on once I’ve ‘faded’. I know that I’m really hammering myself if I do that.
I can’t rest or sleep during the day, as if I do, I can’t get going again and feel sluggish for the rest of the day. I have to take my time in the morning and then keep going for the limited number of hours left until it’s time for bed.
Separate names with a comma.