Are objective outcomes of cognitive function possible?

Things that are likely to make it worse or trigger more easily for me:

• Standing or sitting in a chair with with my feet in the floor -feet raised or lying down is much better
• High temperatures
• Background noise - especially people talking
• PEM
• Allowing myself to get too hungry
• Not drinking enough fluids
• If I have been woken up or been kept awake by something during the night. I don't mean just the usual bad sleep but if some external factor disrupts sleep.
  
• About 10 -15 minutes after a good jolt of caffeine

I think that's most of 'em.

 

One idea I don’t find in this thread is about brain rhythms, speed and activity. Having a lot of EEG studies would help, and for those to be designed by people knowledgable about our condition.
Was it Zinn, presenting in Stanford in 1916, who had done some research like this?

I had some EEGs as part of a neurofeedback system I was trying, FLEXYX in the late 1990s. The treatment didn’t work, but the EEG images seemed revelatory. I was told that Delta waves were coming up from the back of my brain to the front. This means unconsciousness, which certainly isn’t normal while ostensibly awake! It was very meaningful to me as I could connect it to the experiences I have of going into a kind of blackout or hypnotic state. This might be quick or longer.

As an example, highway driving carries a risk for me of losing track of time and place for up to a half hour. My driving skills are good, automatic, and the highways here are lightly travelled. What I found was that I only travelled on the same road, making no turn offs, so that once I came to, what I needed to do was backtrack to pick up the correct trail. However, of course, when this first started, it was terrifying, very disturbing!

Back to the EEGs. The images were just momentary snapshots, so they didn’t always show a Delta wave. But if there were to be studies done with more sustained monitoring—say for an hour—maybe even while the PWME does some tasks, or to be done before and after an exertion, say the next day, that would be a great technique for showing what the brain is doing.

 

Brain rhythms convey a lot about what the cognitive and memory functions can even be. Beta is the high speed (not alpha as I’d expect). That is what employable, competent people are supposed to be in or able to go into during the day. It isn’t just that with many of us, all functions are slowed down, some functions can’t even be performed at lower brain rhythms. The physics doesn’t work out somehow. My image now is of the figure skater who has to be moving at certain speeds to do certain stunts. And now it is of trapeze artists needing to coordinate with their fellows in the air. What happens when there is a slow poke in the air?

 

I did hear of this a while back, and someone mentioned a paper that had been written. But I also read that Delta waves could be influenced (apparently) by our mental processes, albeit not readily, so concluded the BSP brigade might jump on it as grist to their mill. But I have to emphasise I'm only guessing here, as I'm neither medical nor scientist. Others may be able to contribute more.

Edit: Indeed it was your post a while back I was thinking of:
https://www.s4me.info/threads/idle-thought-re-noise-intolerance.947/#post-16746

 

I forget conversations I've recently had with my husband.
I forget where he's gone or how long it will be until he's back. (I used to complain that he didn't tell me)
I forget multiple times over the course of a day that there are people coming for dinner.
I forget what day it is many times a day.
I forget names of people I know really well.
I forget how to use the microwave, the tv,
I forget why I am in a shop and don't know which direction to go when I leave a shop in familiar surroundings
Without a system I forget whether I've taken medication or not

In years past I've forgotten to pick up children from preschool, forgotten to attend events they had on.

Are you aware of the study done with patients and controls doing a cognitive task standing and lying down? Position made no difference to the controls but was significantly different for the patients.

 

I seem to be very affected by the state of my bowels! If they are inflated, I can't think. Once they are deflated, I think much better.

 

Damage to the reticular activating system where dopamine largely comes from, I once read, may be the cause of a slow brain, “brain brownouts”, according to Dr. Richard Bruno. This damage could have come from an enteroviral infection, for example, and could also include the neighboring hypothalamus—still repeating Dr. Bruno who was an expert on Post-Polio Syndrome and who compared CFS symptoms to it.

My memory and cognitive function can be as poor as many note above, but sometimes the missing memory will return after a lag time. This could be anywhere from a few seconds in conversation, during which I usually sound slow and halting, to an hour or half day later, etc. So, in some instances, my brain can do normal tasks but is just slow at it. The slowness increases when I am more fatigued or am sick.

Forgive me, by the way, if I repeat myself in threads—I forget!

 

This is my experience too. At least some of the memories are clearly there for me as they do come back. But at the time I need 'em I'm either desperately searching a blank space in my mind, or I'm not aware they are missing at all.

 

Yes—and this is where I think it is a slowed down brain that can’t make those connections at speed—from the normal speed of conversation to the normal speed at which we need information of whatever kind to complete a task, do it safely, competently and all that.

 

I don't think I've explained what I mean by everyday memory very well. A lot of things that seem like memory failures are not actually failures of memory itself, they're failures in some other really sophisticated cognitive skill that operates on the memory.

So for example, remembering you have people coming to dinner involves so much more than just remembering you invited them. You have to find a way of keeping that future goal in the front of your mind, even when other things distract you. After the distraction is over, you need a way to cue that bigger goal, get it back to the front of your mind. These are very sophisticated skills, so its not surprising that they are the first to be affected when you're not at your best.

Memory, at its core, is just the ability to keep some sort of vague record of things you did recently, so that when prompted, they come to mind. Its is pretty short and decays fast. Our memory for routine events (like eating breakfast) is no more than a few hours, if it wasn't memorable in any way. For things that are a bit out of the ordinary, its slightly longer. So for example, if you saw a strange man in the street outside your window talking to a doll yesterday, and someone asked if you'd seen a strange man that day, you'd remember. Its kind of effortless, that sort of memory, because its a recent event, an unusual one, and you're prompted.

People with advanced Alzheimer's don't get this glimmer of recognition. Its a complete blank to them, like the event never happened.

So "pure" memory is pretty limited. To recall most things, we have to piece together the information like a detective. Like when you lose your sweater and have to mentally backtrack to discover where you might have left it. You put together a strategy: you think about things you did that were memorable and relevant, like a memory of spilling something on your sweater at a bar yesterday. You self-prompt. Slowly you work out when you last recall having it. This is a complex skill, and its very hard for anyone not at their best.

(side note if you're curious: how do we remember things from our childhood? The answer is, we only remember some selected things, and we do this by repeatedly recalling those things, discussing them, and then they become part of our factual database Like what a cat is. So its a different kind of memory again (and that's why people with Alzheimer's are so good at remembering their distant past).

 

This is nearly all the memory I have, period, over any time frame. Semantic memory is OK, not good, and its in decline. However episodic memory ... what's that? I have lots of tricks, mnemonics etc. to enhance semantic recall and memorization, but they are slowly failing.

 

Just stumbled across this. Haven't really looked into it but it looks like this device is being used in research in various brain diseases to assess brain functions like reaction time and how quickly your brain fatigues. It claims to be the "only FDA-listed cognitive assessment tool that doesn't require a baseline test". That would be a useful attribute (provided it works as advertised).

The device appears to have been around for decades but hasn't been applied to ME/CFS or even CF (apart from chronic post-concussion fatigue). With 135 papers listed as using the device over such a long period maybe it isn't that good?

https://www.corticalmetrics.com/howitworks

https://www.corticalmetrics.com/publications

 

It would appear to be...a two button mouse - needs a USB port, has a trailing wire, and everything.

Not even a wireless mouse.

 

Very interesting.

Did you ever discuss your results with a concussion specialist?

They are Neurologists who specialise in brain injuries and tend to operate in sports medicine. However, some stressful internal events can cause concussions even if you don't lose consciousness.

 

Isn't something like this what was found at I think Stanford a few years back? We have intrusive waves that are normal in sleep when awake, but the opposite when asleep? So we are not fully awake, and not fully asleep. I have not read a follow-up on this research that I recall.

 

No, I never went to a concussion specialist. I did have 3 hard knocks to the back of my head from 3 backward falls in my early 40’s, but after only a very brief dazing, I seemed ok. Other parts of me were worse hurt, but I recovered ok. Did not bother with my primary (only) doctor who would not have done anything anyway. I did not start into ME/CFS for a few more years anyway.

 

Researchers always seem stuck looking either for infection or inflammation. I find this to be a bore, coming out of the old view of illness as something hot and intense. Everything about my own condition is slow and low.

I would like to see brain research that looks for inactivity, like a couple of studies in the past which showed poorer activity in the brain stem or less connectivity from it to other parts of the brain.

Brain wave activity mapping would be great too.

 

In 1993 I had a SPECT (HMPAO? whatever that means) scan that showed serious decreases in brain metabolism, and worse in specific areas but I forget the details. This was when I was still a PhD student, nowhere near my later decline. How much worse is this in a severe patient?

 

Yeah, we are the vanishing people. It would be nice if research could catch up to us before we turn into ghosts.

 

It's interesting, @Ravn. I saw this paper where it was used to assess concussion: https://downloads.corticalmetrics.com/pub/Pearce2021.pdf?n=1

The question of how to assess is tricky because there are literally thousands of ways to assess cognitive functioning, and so you need to first characterise the problem just a bit to work out where to start. So for example, the PASAT, which involves serially adding up numbers, seems really sensitive to white matter damage/pathology (used in MS). But it wouldn't pick up much if someone had early Alzheimer's, you'd need something more targetted to memory.

But I've wondered about using tests of sustained attention, and ERPs (measuring electrical scalp potentials in repsonse to a stream of sounds).

A problem with resting state fMRI is that people who are unwell for whatever reason show all kinds of abnormalities, and we dont know what they mean - it could be anything from impaired cognitive ability to the activity your brain is doing to get you through the awful experience of being in a scanner.

I also worry about any measure that has been used with depression being used with ME. If the findings are similar, people can use that to justify "psychologising" the cognitive problems.

Since writing on this post in 2018, I've talked to a fewPwME who do have memory problems, in the very everyday sense I talked about above. But I'm not sure how common this is, and most people don't mention first up this when talking about their cognitive problems.

eta: fixed the typos