Are objective outcomes of cognitive function possible?

It depends on how much work I'm able to do in the future, but I'm a cognitive neuropsychologist by training, and I'm interested!

@Alvin, it makes total sense that the dementia test didn't fit your problems, they're mainly designed to test memory, which is the primary, and often first appearing, symptom of Alzheimer's.

 

Very nice

I agree but its more then memory in ME/CFS and dementia and the executive functioning tests are simplistic, not realistic IMO
PM sent

 

Nowadays for me it does not matter how long I sleep. I wake up when I am rested or when my bladder alarms me but then I go back to sleep again when I have emptied it.

When the alamclock wakes me and I have nothing urgent I go back tp sleep.

 

Does this count?

I'm a pretty good navigator and I map read (proper road maps back in the day) very well. I had no problems translating my direction of travel i.e. north, south etc with working out whether I was following a route up, down or across the map.

Then I started to get lost in familiar places. I would be a couple of miles from home and suddenly I would realize that I knew where I was and I knew where home was, but I couldn't figure out how to get from one to the other. Is pull over and get my map book out. Still couldn't figure it out - should I be going up, down or across the page?

My sleep is variable. I think it is probably fair to say that when I sleep less this is likely to be worse. But....I don't know whether poor sleep is a symptom or a cause.

For example, if I have been sleeping well and then push beyond my limits I will trigger poor sleep by becoming overtired. Poor sleep means I have less room to play with before becoming overtired and therefore mucking up sleep.

There are also phases where I just don't sleep very well for reasons that aren't quite clear.

If you do want to ask questions or develop a test then PM me. I'm not great with time sensitive stuff though.

 

Me too.

 

By ordinary standards I get enough sleep - approximately 9 hours a night for the last 4 weeks, over 8 hours before that. I think I sleep less in the summer, and I get insommnia if I overdo it in the day. My perception is that sleeping more doesn't help me cognitively, but insommnia can add to it. What really makes a difference is overexertion, mental or physical.

 

My map reading is very bad. I get left and right muddled up. I can get lost in a square building. I get lost in computer games. I don't think this is anything to do with cognitive dysfunction from any kind of illness or dementia, I think it is inate. I've always been bad with this kind of thinking.

 

That's a very good point. Sleep problems could well contribute to cognitive problems.

But I guess there might be more. A PET scan shows undersupplied brain regions in my case, and I made the recent experience of hypoxia symptoms when air quality wasn't optimal (including weakness and partial paralysis, dozing and inability to speak or keep eyes open), and it seems to be due to too low oxygen in the brain (and other cells I guess). That's not solely my own theory. The symptoms disappear when oxygen is given.

Are there others who know this, too?

 

Sure. My husband is like that. The most useless navigator ever & he even admits it himself.

I was the opposite though and on a good phase am still ok or not too bad. When PEMed I'm worse than him though!

 

I meant to add that the sleep I get doesn't feel like enough.

 

That's very interesting, @Inara, and very much sits with the ideas I'm mulling over right now.

So its this: fMRI studies suggest that in order to do well on certain kinds of "effortful" mental tasks, we need to first increase blood supply to key parts of the brain that are needed for the task. I'm thinking that ME might make this process inefficient, and that would affect how well PwMEs do in these situations.

By "effortful", I mean the sorts of tasks that you feel you can only do for a while, because they "really bust your brain". Like continuously doing complex maths equations, or focusing on two things at once, or holding onto a piece of verbal information (numbers, words) for more than a few seconds.

So not memory, at least not the everyday kind, that's not really effortful (when you see someone you know, it usually feels effortless to remember that you saw them quite recently - like yesterday). This kind of everyday memory is what demdenta tests are supposed to measure, but it rarely seems to be a problem for PwMEs.

 

For me, I think working memory tests would pick up poor performance, and also any tests with competing demands for attention or where there are distractions during a task. Speed of processing is also definitely less...
trying to decipher what someone has said when there is music or someone else speaking is a big issue.. so if my husband talks to me while we are watching tv, I have to rewind and watch the bit again. He finds that immensely frustrating!
Shifting attention from one task to another is also poor now.

I’m also clumsy now - hand-eye coordination is not as good, and balance is not as good.....

I’m not sure if I would score within normal limits or not - it’s such a shame we don’t have pre-ME results for comparison!

 

The difficulty is that what is effortful varies a lot between individuals. I suspect it's the things that used to take more effort when I was well that are most likely to crash my brain now. For example, writing was always an effortful task for me (although I was usually quite pleased with the final product) as was social interactions while higher level mathematics or computer programming came more easily. Thus now writing and talking crash me easily while a bit of maths or programming are more tolerable.

 

FWIW, I've had numerous cognitive testing done over the last 15 years as part of HIV research (about 25% of pwHIV have mild cognitive impairment).

1.5 years ago, after I've had ME for 3.5 years, I was tested again (takes almost 3 hours) and scored very similarly to my previous tests (in spite of now being in my early 50s), having reached the ceiling on a few of the tests - I was experiencing my usual nausea that morning and had vaporized a lot of marijuana prior to testing (I figured it would negatively impact my scores but was feeling too crappy to care by that point), yet still scored "more than 2 standard deviations from the mean" (I assume they meant above the mean - hahaha) - at one point one of the researchers turned to the other and asked if any one else had scored that high on that particular test ("a few" she said).

The results conflict somewhat with my experience, but I was told that when I was pushed (like during the tests) I was still performing well. Kind of made me doubt the validity of the tests to pick up on ME induced cognitive impairment.

And doubt the narrative that marijuana impacts short term memory.

 

Yes, that's true, but there are some tasks that are effortful for everyone. No matter how good you are at them, you can only do them for a short time. Intense focussed attention, etc. That's the sort I'm interested in.

 

Yes, that sort of makes sense. The DSM diagnosis of Alzheimer's requires you to have memory problems plus one of the following: language difficulties, visuospatial difficulties or problems with higher motor control. So technically you need one of these too for the diagnosis.

But you're right. A whole lot is left to chance on those tests, and how you are on the day. They can only really pick up HUGE problems on a task.

 

Stupid question : Does our position make a difference?

(or - if I stand on my head will I recognise a calf when I see one?)

apologies if that's seriously stupid, but I don't know

eta -I'm thinking about the research (of which there's not much) which talks about blood flow and vascular differences.

 

I think this is an interesting idea - and could be a topic for a research project. Does increased blood/oxygen supply improve some symptoms, like cognitive function? For instance, what about muscle performance, too? Would they burn later? Could they be used longer?

I read that oxygen intake might help with cluster migraines, but 15l/min. That's really a lot! Maybe in ME, oxygen intake must be really high, too, in order to see improvements?

I spoke about my nasty experience with a researcher/doctor from the Charité. She couldn't in detail explain what was happening, but - I hope I understood her correctly - she said it would fit the findings that oxygen is not correctly transported into the cells (I guess she meant the Fluge/Mella paper about pyruvate kinase? And maybe some CPET papers, e.g. by Van Ness?). This would include the brain, wouldn't it? And it's coherent with my PET findings.

In my case I guess the cognitive problems (especially short term memory) are at least partly due to too low oxygen in some regions of the brain. The brain itself seems to be absolutely fine.

During this "hypoxia situation" I felt so utterly weak, I couldn't barely move my arm, and I imagined this could be like severe ME. But - wouldn't oxygen intake help, at least a bit? (I have an oxygen device at home, and although it helps with some things, it's not a cure. So...?)

 

Whilst, at least in my case, hypoxia can cause confusion, disorientation, weakness etc. I wouldn't say it particularly resembles ME. I was told, by a NHS hospital doctor, just over 20 years ago that I was experiencing hypoxia (I got taken in because I was fitting), and that hypoxia was a symptom, but they couldn't determine what it was a symptom of in my case.

Much the same as the fits then