Are objective outcomes of cognitive function possible?

[Inara]

and that hypoxia was a symptom, but they couldn't determine what it was a symptom of in my case.

Huh, great. Very reassuring.

 

[Peter T]

Then I started to get lost in familiar places

I too can experience 'jamais vu' a failure to recognise places I know well. When driving I can get lost on routes I know very well. It can last from a minute or so to several hours. Sometimes I can remember verbal information about the route that I can use to navigate, eg I know that I turn right by the red phone box, so I turn right without having any geospatial knowledge if that is correct or not. When it has lasted longer than a few minutes using a map does not help. The longest I have been stranded was several hours when I just rested. However now I use SatNav when I am driving so can just follow the instructions if in a 'jamais vu' state.

In relation to any sleep involvement I do not normally attempt to drive if tired. Indeed currently I only have energy to go in the car once every few months.

Before the onset of my ME, some 25 years ago, I also used to have a very good sense of direction. When I lived in London some 35 years ago, I could find my way about by dead reckoning. Now I have a very poor sense of direction and have no feel for which compass direction is which without other information. I find it harder to use a map.

 

[Wonko]

I have been known to get lost on a straight road, that I walked along most days, maybe half a mile from point to point. The technique I "developed" was to assume I knew what I was doing at some point in the past and keep going in the direction I was pointing, until I recognised something that was "helpful". Some of the time this worked, others, not so much.

I have also been known to get lost in my flat - and it's not a big flat

 

[Peter T]

I also experience additional language processing problems linked to the current severity of my ME or to PEM, over and above the very common word finding difficulties.

My spelling has always been poor but it can completely fall apart during PEM. In a situation like this with poor original skills it could be due to a general processing deficit rather than a specific problem with the language system. However I also have other problems where I had above average premorbid skills. (I was previously a research neuropsychologist, then a speech and language therapist.)

I can experience higher order language comprehension problems such as spotting subtle humour, or when reading I struggle with understanding material that requires integrating information between sentences or paragraphs. I particularly struggle with scientific material, especially if it requires assimilating new technical vocabulary.

Reading is much harder work, though premoridly I had a higher than average ability, I used to read three or four books a week, both fiction and non fiction, but now struggle to read one or two a year.

Though never proficient, my ability to use foreign languages has deteriorated markedly. Of the three languages other than English that I could attempt, only my German remains at all functional, but often contains words from French or Gaelic as I can not reliably identify them as not not being German. The deterioration in my least used languages may not necessarily relate to my ME, but the fact that I often will unwittingly pepper my German with French and Gaelic words I feel may be linked to my ME.

Further I could not attempted to learn a new language. In South America I could attempt an occasional word of Spanish, but I had experienced some Spanish when a child. However in Kenya I failed to retain even a handful of Swahili words or phrases as with Japanese in Japan, even with frequent repetition over several weeks.

 

[Invisible Woman]

The odd thing about the getting lost in familiar spaces while driving - I was still driving competently when this was happening. Driving skills are obviously very different in terms of brain function.

I very rarely feel up to driving these days and if I do drive it's normally under supervision.

I didn't stop and rest in those days - didn't know how to manage what was going on and desperate to get home , usually after work. I just drove round until eventually something clicked. One night that took over an hour .

Who knows what the locals thought!

 

[Daisybell]

@Peter Trewhitt i find my spelling deteriorates significantly when I am feeling bad. I transpose letters/leave letters out etc. Normally spelling is not a problem at all. I am also now unable to read any book requiring significant concentration. I can manage lightweight fiction when I’m feeling average, although I read far far less, but non-fiction is hopeless. I have a book about birds my mother sent me two years ago and I’m only about 1/4 of the way through it...
As for research papers..... I just rely on other here to read those and tell me what they say!

 

[MeSci]

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.

I doubted it too, when prior to getting ME, after a night of little or no sleep and a good lungful of dope, I performed extremely well on a newspaper test that would potentially have qualified me to join MENSA!

I would have trouble now, but only in the last couple of years, I think, not in the previous 20-odd years with ME - in fact I gained 2 degrees in science, the second at level 1 (a Masters) while physically impaired by ME.

How I wish I could still use them. I even have trouble following science papers now.

 

[MeSci]

My frequent problem is inability to think due to bowel inflation! Once that goes down, I can think much better. But sometimes it's present almost all day.

 

[Woolie]

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?

Yes, the brain and cardiovascular (CV) system are really closely intertwined. In healthy people, CV efficiency - as indicated by low resting heart rate and high heart rate variability - is associated with good performance on effortful control tasks.

You've probably seen all that recent research demonstrating that exercise enhances cognitive function, and this is probably how it does so.

Its hard to know if increasing blood flow to the brain in general would help. This is more about effectively channelling blood flow to the parts that most need it. Still, it would be a useful first step, as it might help mitigate the worst of it.

@Skycloud, your suggestion is actually a good one. What about just lying down? Do people get any relief from cog symptoms when horizontal?

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.

Its not exactly hypoxia, that would kill your neurons. Its more failing to modulate blood flow in a maximally productive way.

The problem is blood flow not oxygen per se, but who knows, maybe oxygen might offset some of the worst consequences? Hard to know, but could be worth trying..

@Wonko, what you say about seizures is interesting. Some PwMEs have seizures too, and it would be interesting to know if those people also have more impaired cognitive function overall.

 

[Peter T]

What about just lying down? Do people get any relief from cog symptoms when horizontal?

I can do more lying down. I can use my iPad lying down, but struggle to use the computer sitting. Also I do not have a phone set up in my bedroom (no mobile signal where I live), so generally try to Skype/ FaceTime or email lying down rather than using the phone.

 

[Woolie]

I can experience higher order language comprehension problems such as spotting subtle humour, or when reading I struggle with understanding material that requires integrating information between sentences or paragraphs. I particularly struggle with scientific material, especially if it requires assimilating new technical vocabulary.

Reading is much harder work, though premoridly I had a higher than average ability, I used to read three or four books a week, both fiction and non fiction, but now struggle to read one or two a year.

That must be a total bummer, @Peter Trewhitt. Especially given your profession. Its very sad to read some of the things people are saying.

The navigation problems @Peter Trewhitt, @Wonko @Invisible Woman and others talk about sound really "hippocampal" to me. About retrieving familiar, well-learned spatial maps. That's got me thinking a bit differently now, will explain when I've thought it though.

But I'm still not sure, no-one has really talked about everyday memory problems of the kind you get in diseases affecting the hippocampus, like Alzheimer's. This would be things like not remembering that you just saw a person the other day, not remembering whether you had a shower earlier that morning. Early Alzheimer's people mention experiences where suddenly they find themselves in a situation, and they have no clue how they got there - no memory of what just passed before.

Though never proficient, my ability to use foreign languages has deteriorated markedly. Of the three languages other than English that I could attempt, only my German remains at all functional, but often contains words from French or Gaelic as I can not reliably identify them as not not being German. The deterioration in my least used languages may not necessarily relate to my ME, but the fact that I often will unwittingly pepper my German with French and Gaelic words I feel may be linked to my ME.

I get that too, though, despite not getting many other cognitive symptoms (if any really). I'm especially good at swapping cognates (e.g., similar sounding words in French vs. Spanish). Maybe that one's just lack of practice/ageing?

 

[NelliePledge]

I definitely find that I can do more reading and posting lying down. When I was still working I had to take breaks to lie down on my sofa to rest. And if I had used my energy into the red I could still have a reasonably sensible discussion for 30 minutes on the phone lying down. And I’m mild/moderate on severity.

 

[Inara]

But I'm still not sure, no-one has really talked about everyday memory problems of the kind you get in diseases affecting the hippocampus,

Actually, I have bigger short memory problems (and the PET scan showed undersupplied regions in the hippocampus and amygdala).

I can forget from one moment to another what I wanted to say, what I wanted to do, what other people said. I forget that I already told a story, I forgot that I met people on certain occasions, I can't keep any numbers or anything (a single number maybe, for a short time). I "confuse" things.

It fluctuates, though. I had a very bad phase in 2016, where even simple logic thinking was difficult, and I forgot a lot. Then it got much better in 2017, and for some weeks it's a bit worse now.

 

[MeSci]

It fluctuates, though. I had a very bad phase in 2016, where even simple logic thinking was difficult, and I forgot a lot. Then it got much better in 2017, and for some weeks it's a bit worse now.

I sometimes wonder whether it's the weather or the daylight-levels that's affecting me.

 

[Invisible Woman]

But I'm still not sure, no-one has really talked about everyday memory problems of the kind you get in diseases affecting the hippocampus, like Alzheimer's. This would be things like not remembering that you just saw a person the other day, not remembering whether you had a shower earlier that morning.

The snag is I often forget the symptoms till someone says or describes something and then think: "Oh, yeah! That happens."

Sometimes I've been in the phone when my husband comes home. He sees me chatting and wanders off. When he sees me again not 5 minutes later he might ask who was on the phone and I look at him in bemusement - "was someone on the phone? Did it ring?". I might remember in a few hours or I might not.

If we're out and having a decaff coffee somewhere he usually gets the drinks while I go and sit. Sometimes if I'm feeling cognitively overwhelmed I'll stay by his side in case I get lost - it has happened. I'll look at the menu board and tell him what I would like. Then I'll tell him again. And again. Eventually, I might notice that he's got an incredibly patient look on his face and ask him if I've told him before. "Yes, love, but don't worry. Just 5 times."

We can have whole conversations about food shopping or arranging booking the car in for a service or whatever. Conversations that I have been fully participating in - 30 mins later....gone.

I'm not that bad ALL the time, but if I push myself it can get scary.

 

[Peter T]

The snag is I often forget the symptoms till someone says or describes something and then think: "Oh, yeah! That happens."

I find it hard to recognise general problems in intellectual functioning that are ongoing. As discussed in other threads problems can just become the new normal.

However at those times when my brain actually works well it becomes very apparent that in general it is not working well.

 

[Invisible Woman]

I find it hard to recognise general problems in intellectual functioning that are ongoing. As discussed in other threads problems can just become the new normal.

However at those times when my brain actually works well it becomes very apparent that in general it is not working well.

How true.

The new normal in terms of cognitive function is definitely much, much lower than normal.

On a very good day, it is still much lower, but a marked improvement in my New baseline.

Then there are the bad days

 

[Subtropical Island]

@Skycloud, your suggestion is actually a good one. What about just lying down? Do people get any relief from cog symptoms when horizontal?

Yes I think so. I don’t think I have OI (as others on the forum describe it) but I do now (only figuring all this out over the past few months) find that lying down means I can carry on reading and even commenting on the forum far longer than I can when sitting or standing.

But I'm still not sure, no-one has really talked about everyday memory problems of the kind you get in diseases affecting the hippocampus, like Alzheimer's. This would be things like not remembering that you just saw a person the other day, not remembering whether you had a shower earlier that morning.

That was an early clue: not knowing if i’ve just been to the toilet and having to deduce it from observing that my hands are faintly damp.
(And, oh dear, this comment inserted here: below I responded to this whole paragraph but the screen flicked and I thought this was a new comment I wanted to reply to, not the middle of one I’ve only just answered.)

Early Alzheimer's people mention experiences where suddenly they find themselves in a situation, and they have no clue how they got there - no memory of what just passed before.

Definitely happens. See ME moments thread. Story of my new life.

I get that too, though, despite not getting many other cognitive symptoms (if any really). I'm especially good at swapping cognates (e.g., similar sounding words in French vs. Spanish). Maybe that one's just lack of practice/ageing?

Swapping words in other languages was a sign I was getting fluent for me in the past. I remember being in the car on the way home from the airport, after a year in China and Switzerland, thinking in Mandarin then switching to French and German looking for English somewhere. Took an hour to get into consistent English.
Or I’d be looking for the word in a new language and keep inserting one from French or Mandarin. Or getting lazy in French and using the much simpler Mandarin (skip tense and just use a word to say it’s a completed action: le).
That was all pre illness (unless you subscribe to the idea that my illness -got ‘the flu’ and was unresponsive to voice and touch for 2days- decades ago in China was my starting point).

Swapping unrelated words in English is my new thing. Sometimes there’s a sense to why I picked a word, sometimes it’s just a word that existed in my brain when the one I wanted fled.

The snag is I often forget the symptoms till someone says or describes something and then think: "Oh, yeah! That happens."

Yes! I hate this, it makes me feel like any impartial observer like my doctor will think I’m a hypochondriac. He asked me the other day if I get tingling and numbness in my fingers and toes and I said “yes!” and then my heart sank because surely I can’t say yes to everything.
With limited doctor time, i tend to accidently focus on the new curiousities and forget about the big every day issues.

Sometimes I've been in the phone when my husband comes home. He sees me chatting and wanders off. When he sees me again not 5 minutes later he might ask who was on the phone and I look at him in bemusement - "was someone on the phone? Did it ring?". I might remember in a few hours or I might not.

If we're out and having a decaff coffee somewhere he usually gets the drinks while I go and sit. Sometimes if I'm feeling cognitively overwhelmed I'll stay by his side in case I get lost - it has happened. I'll look at the menu board and tell him what I would like. Then I'll tell him again. And again. Eventually, I might notice that he's got an incredibly patient look on his face and ask him if I've told him before. "Yes, love, but don't worry. Just 5 times."

My husband isn’t quite as sweet or calm as Invisible Man, mine gets ‘out of the blue’ exasperated with me. I’m entirely bewildered with the sudden turn of events. I’m trying to learn that probably it really is me who is being unreasonable. At the moment it happens though, it’s hard to understand why asking if he could please do x when he gets a moment unless he minds ...goes so horribly wrong.
Just this morning I recall desperately trying to tell him i’m not a nag. ...oh dear. That doesn’t sound right does it?

We can have whole conversations about food shopping or arranging booking the car in for a service or whatever. Conversations that I have been fully participating in - 30 mins later....gone.

I'm not that bad ALL the time, but if I push myself it can get scary.

Yes, it was this sort of thing that made me realise I really was having cognitive difficulties.
And I always reassure myself that because it’s not always like that it can’t be ‘real’ (permanent/irreversible) damage.

I find it hard to recognise general problems in intellectual functioning that are ongoing. As discussed in other threads problems can just become the new normal.

However at those times when my brain actually works well it becomes very apparent that in general it is not working well.

Yes.
The double edged sword of the good day. Balancing.

 

[Invisible Woman]

My husband isn’t quite as sweet or calm as Invisible Man

Dunno he can be a grumpy git...

But, to be fair, he has had 20 years to get used to it. It took him a long time to understand that how he handles it can make a big difference. Becoming annoyed with me when I'm like that only makes it worse. It's in his own best interest too.

 

[Woolie]

Thanks, @Subtropical Island. What you say sort of complicates things, because if everything's uniformly bad, then we don't have any leads on what to test for.

Maybe I should be asking what sorts of problems people don't generally experience. No, that's impossible to answer. Maybe I need to know which problems are the most persistent and troublesome.

Or maybe the key to it all is to focus on what situations the problems are worst in. Lying down more than standing up, right? When attending to multiple things more than just one thing, right? When you've been physically or cognitively active for a while, right?

Can anyone shed any more light?