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

[SugarSquared]

You may have missed that S4ME came into being to a large part because a group of people found Johnson's commercial journalistic approach to science less than helpful!!!

I’ve been trying to learn more about this and the history of S4ME, but every search I do comes up dry. Is there a page about this, either public or members-only? As a newer member, I’m very interested in learning about why this forum was founded.

 

[Jonathan Edwards]

I’ve been trying to learn more about this and the history of S4ME, but every search I do comes up dry. Is there a page about this, either public or members-only? As a newer member, I’m very interested in learning about why this forum was founded.

We once had a rule that we wouldn't rake over the coals. It was traumatic for certain people, some of whom are no longer members but deserve a lot of respect for sowing the seeds of this forum earlier. I may have said too much already. Maybe just to add that a group of like minded people wanted to go on discussing the science of ME/CFS and the prospect of making progress in a way they had found stimulating and rewarding at a point in time when it seemed that option might be closed by the directors of another organisation. That is, at least, my memory of things.

 

[Axel]

Les hallucinations ressemblent souvent aux rêves : on voit quelqu'un qui n'est pas là ou on entend ses pensées diffusées par la télévision. Selon moi, cela implique une forme de création de scénarios similaire à celle utilisée pour les rêves

That’s more or less what I meant. I mentioned the cortex, but I was thinking about representations functions. I made too quickly assumptions about the possibility of a P50 role in the creation of auditive hallucination.

In short, P50 measures the ability to stop paying attention to a repetitive sound.

It doesn’t seem as significant in the process relating to schizophrenia, but abnormal readings are more commonly found.

Irritability could be linked to an ineffective P50. (And we can understand why)
-- It’s still Wikipedia.

Here’s an article on P300, again in the context of schizophrenia, as that’s the context in which these measurements were developed. I haven’t read it yet.

P300 in Schizophrenia: Then and Now - PMC

In 1965, Sutton and colleagues described the P300 component of the EEG-based evoked potential that was affected by stimulus uncertainty; that is, a larger P300 amplitude was associated with a failure to accurately predict the sensory modality of the ...

pmc.ncbi.nlm.nih.gov

Edit : Sorry, the quote seems to appears In french, but I didn’t find the solution.

 

[Hoopoe]

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.

For me the illness is several layers of dysfunctions. When I was physically impaired and could do little, I didn't realize how mentally impaired I was because I couldn't do the activities that tested my cognitive function.

 

[bobbler]

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 get a bit worried that they might be missing / assuming we struggle with these 'big questions' that might be conceptual and the issue is us understanding the answer, when it is more about cognitive load of remembering all the parts of the question and putting them together to interpret what is being asked - and the pull/load on the short term memory/exec function this causes. And also how it drains us.

There's also a major flaw if they did these tests in the same order for all and consecutively given fatigue, fatigability and impact of eg noise competing with thinking and exhausting us by having those added inputs (it is so much more draining to try and do a conversation when it is in a noisy place than I think it is for normal people).

Hopefully they reversed the order in which the tests were done for half of participants as I thought was the norm from my psychology days to see if it is just the 'last tests' that start to show 'differences'.

If I had to name the things I have to look out for being vulnerable on and explain if I'm having to interact on a poorly day it would be compound or complex questions. I'm also still on a sharp moment and always have been incredibly good at mental maths, yet can't calculate the number of pills that would mean on a prescription these days quite often when someone asks me and that ability can strangely get crushed if someone runs through my entire prescription list - so it gets worse having started off able and quick for the first one and by the fourth the sheer exhaustion the others has created (even when it just came to me ping). This is of course worsened because it is people asking me this question as part of a conversation and normally a stranger and the conversation is about 'something' that is a bigger thing than testing can you do that sum so other elements people take for granted or don't understand the weight of (as a patient with all the bias we have against us) these added elements.

And then the first thing even when I've been less severe, but exhausted at that time has always been word-finding. I'd definitely suddenly get it in the middle of a work day and had it from very young. But now I'm more severe it is so bad, and is also very much like a fatigability because it happens eg 10mins in. I actually start moving my eyes to look upwards actually looking for words without being able to stop it or close my eyes too.

People confuse that with the first bit/bigger issue and if I'm lying quietly then I can quite often think eg something that might be to do with my right to choose for myself something. And yet then not be able to put it into words eloquently.

But then after long enough of struggling and seeming like I'm stuttering I can look like I rally when actually it's perhaps a bit of adrenaline kicking in but also I'm just switching into 'blag it' mode without realising it...

and sadly this is where there's a weird twist on top of this researchers wouldn't know to be aware of unless they did their exploratory reesearch first with experienced patients - I'm not sure spending a lifetime circumnavigating round that out of necessity to hide it due to others attitudes/the situation has helped at all because it becomes something I can't avoid doing, but leads quite often to me speaking on the small talk phrases I have to hand to 'say something coherent-sounding' but without even considering or even having taken in the question asked.

I can't shut my mouth off even when sometimes I'm even well enough to be aware I need to shut it, although if someone keeps asking then ask my body dishevels further visibly I'm losing even more ability to control that. And I know I'm being taken advantage of then if someone carries on, in a way that can really only be extremely dodgy in their personality or reasoning they tell themselves for doing it because it isn't missable.

 

[Violeta]

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."

Interesting study on cerebral hypoperfusion.

"vascular pathology"

Chronic cerebral hypoperfusion: a critical feature in unravelling the etiology of vascular cognitive impairment - PMC

Vascular cognitive impairment (VCI) describes a wide spectrum of cognitive deficits related to cerebrovascular diseases. Although the loss of blood flow to cortical regions critically involved in cognitive processes must feature as the main driver ...

pmc.ncbi.nlm.nih.gov