Higher-order brain processes, rather than early processing, underlie sensory problems in ME/CFS: Evidence from ERPs, 2026, Kumar et al

I had ADHD before ME/CFS so my executive function/memory/common sense might just be the first thing to go when things aren't going well in my brain.
Thank you for your explanation - that makes sense. I was trying to relate it to my experience of ME as my inability to initiate/do a task is always to do with lacking energy - not the motivation/ability.
 
Could you elaborate? Do you mean you have the energy to clean up the kitchen or table but struggle to actually do it?
I have this. I mean I’m very severe I can’t get out of my bed but every decision, even super simple ones. Cost a lot of cognitive capacity and can be very difficult. Like if my caregivers ask “do you want X or Y for dinner” I’ll pretty much sort of freeze and be overwhelmed at first and it takes me some time and energy to parse the question then respond. In that sense I’d almost wished the choice was made for me.

I find it much easier with questions that don’t have a “time limit” I can just read it once and slowly mull it over the next day even if its super simple.
 
Like if my caregivers ask “do you want X or Y for dinner” I’ll pretty much sort of freeze and be overwhelmed at first and it takes me some time and energy to parse the question then respond. In that sense I’d almost wished the choice was made for me.
Oh that's an interesting example. I didn't consider this executive function - for me this is something I consider to be a kind of cognitive lag. I have to repeat the question over and over until my brain understands what is being asked. The more brain fog I have that day, the longer the "lag" is. But once I process what is being asked there's no issue with making a decision.
 
I also recognize the feeling of simple tasks being mentally overwhelming/stressful/impossible to carry out. I have only a few hours on most days (none on some) where I can do it adequately. I can force myself to try anyway but it is very stressful to the point of being detrimental if done consistently.

Interestingly a clinical psychologist had nothing useful to say on the subject, while in various patient forums this phenomen is described often. The thinking on some patient forums is that this is in part executive dysfunction: difficulty planning, initiating and carrying out tasks. Another part may be simply abnormal mental fatigueability.

My ability to do things well degrades over the course of the day. In the morning I can do sports, drive, study, solve problems, adapt to situations, work with only subtle difficulty. That "energy" doesn't last long, and once the day's "energy" has been exhausted, these things become too difficult or very stressful. A key difference between me and healthy people seems to be that their energy pool lasts longer, they can operate adequately even when they've exhausted their productive hours, and their energy recharges adequately with sleep.
 
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Which is confusing, since schizophrenia is usually regarded as the par excellence example of a disease involving higher order brain processes.
As it concern sensory problems, I can imagine that the cortex would try to interpret what it does not perceive directly as a sensory problem. Could this lead to what is called hallucinations?
 
I have this. I mean I’m very severe I can’t get out of my bed but every decision, even super simple ones. Cost a lot of cognitive capacity and can be very difficult. Like if my caregivers ask “do you want X or Y for dinner” I’ll pretty much sort of freeze and be overwhelmed at first and it takes me some time and energy to parse the question then respond. In that sense I’d almost wished the choice was made for me.

I find it much easier with questions that don’t have a “time limit” I can just read it once and slowly mull it over the next day even if its super simple.
I have this as well, at least to some degree. It’s even worse if they as «what do you want for dinner», although wasn’t any good at that to begin with.

PEM makes it far worse.
 
Yes, that describes it. A feeling of being overwhelmed by something that at other times would be such a simple problem to resolve.

I sometimes find myself walking back and forth the 5 feet of counter space trying to figure out what to do.
I have this. I mean I’m very severe I can’t get out of my bed but every decision, even super simple ones. Cost a lot of cognitive capacity and can be very difficult. Like if my caregivers ask “do you want X or Y for dinner” I’ll pretty much sort of freeze and be overwhelmed at first and it takes me some time and energy to parse the question then respond. In that sense I’d almost wished the choice was made for me.

I find it much easier with questions that don’t have a “time limit” I can just read it once and slowly mull it over the next day even if its super simple.
This sounds like the kind of thing I go through when I am deep in PEM. When I am experiencing what I consider to be fatigue that is moderate or more intense in severity, I struggle to respond to questions and decide what my next task should be. It's one of the only times I experience brain fog (which sometimes leads to imposter syndrome about if I have ME/CFS). I'm very lucky that I have been able to take the summer off from school and rest extensively. It has greately reduced the number of these brain fog/slow cognitive processing moments I have.

I'm sorry that both of you (and undoubtedbly many more) experience that on a regular basis.
 
Regional alterations were most frequently identified in the cerebral cortex, with a notable focus on the frontal cortex.

However, our meta-analysis data revealed a significant hypoactivity in the insular and thalamic regions, contrary to observed frequencies.

These abnormalities, occurring in pivotal network hubs bridging reason and emotion, disrupt connections with the limbic system, contributing to the hallmark symptoms of ME/CFS.

Furthermore, we discuss the regions where neuroinflammatory features are frequently observed and address critical neuroimaging limitations, including issues related to inter-rater reliability.

This systematic review serves as a valuable guide for defining regions of interest (ROI) in future neuroimaging investigations of ME/CFS.

 
As it concern sensory problems, I can imagine that the cortex would try to interpret what it does not perceive directly as a sensory problem. Could this lead to what is called hallucinations?
Not sure i quite follow that. I don't think the cortex tries to do anything. Each cell behaves as it is set up to behave. Hallucinations tend to be a bit like dreams - you see someone who is not there or you hear your thoughts being broadcast from the television. My take is that this involves the sort of scenario-creation that dream-making uses, and that is something that I don't think anybody understands at all.

I guess my thought about all this is that to separate brain processes into higher and lower has some very basic sort of justification but no way is it going to get us to understanding what is going on in any of these diseases. Higher processes are not just cortex. They involve signal sending from cortex to thalamus and back all the time. The cortex may just be a sort of Google look-up library with all the critical decision forks being in basal ganglia. I don't think anybody has a clear picture. The popular view of conscious experience events is completely wrong - and contradicts basic neuroscience principles - but nobody seems to notice much!!

All that said, comparing these components of ERPs may give us some basic data that allows differences to be identified between types of problem.
 
Regional alterations were most frequently identified in the cerebral cortex, with a notable focus on the frontal cortex.
Neuroinflammation or hypoperfusion of the frontal cortex.

"The frontal lobes also subsume what is collectively referred to as executive skills. These functions include attention, rea- soning, judgment, problem solving, creativity, emotional regulation, impulse con- trol and awareness of aspects of one's and others' functioning."
 
These abnormalities, occurring in pivotal network hubs bridging reason and emotion, disrupt connections with the limbic system, contributing to the hallmark symptoms of ME/CFS.

Furthermore, we discuss the regions where neuroinflammatory features are frequently observed and address critical neuroimaging limitations, including issues related to inter-rater reliability.

These look like unsubstantiated statements. So far neuroinflammation has not been observed in any consistent form. If anything the most recent study showed the opposite of what was expected for inflammation I think. And of course inflammation is characterised by increased blood flow.
 
Cort Johnsons has a good article about the brain.

Neuroinflammation and lymphatics.
When I wake up in the morning is when my brain usually feels the worst. I feel as though I have a hangover.

 
It's scary because the frontal cortex is of importance in Parkinson's.
And have you seen that the number of Parkinson's cases has increased since COVID?

I can't read this right now, but...


We review the literature to date for answers considering the relationship between SARS-CoV-2 infection and PD/parkinsonism, examining pathophysiology, clinical manifestations, vaccination, and future directions.

I am looking forward to reading this one, too

 
It's strange because I don't recognize myself in your description. My cognitive abilities are intact, and my mental sharpness is still there. I've been bedridden for 18 months; my episodes of PEM manifest as a sensation of my brain going to explode, as if it were swollen with pressure in my head. I have the same sensation without PEM but with less intensity. Only LDA helps me with that sensation.

But my intellectual faculties are intact. However, I can't read for long without experiencing PEM... On the other hand, choosing, responding, etc., are no problem at all.

I do dictations on my phone to see if I have any cognitive decline, or I take IQ tests, and I'm still doing very well.
 
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