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How to objectify brain fog / cognitive dysfunction?

Messages
57
Location
Germany
I was always wondering, if brain fog / cognitive issues are part of my issue.

I mean, it seems so, somehow. When I take a look on the ICC and CCC criteria, I match nearly every cognitive problem mentioned there. Its definitely a much milder form of cognitive problems than others have. At least, from what I have read here. Some of us have really hard stuff to deal with. On the other hand, some of you show a pretty impressive amount of intellectual work, when it comes to researching your own illness and concluding possible treatments.

When thinking about myself, I had theese problems lifelong, at least long before illness onset. Word finding problems, forgetting what I was supposed to do...

So when it is pathological? And are there ways to objectify?

I recently ran a IQ test (60 mins) with time limit to see how I react to the cognitive work and mental stress. My body reacted (sweating ect.) and I felt mentally challenged somehow (loss of focus ect.), but I was able to make it through and achieve quite a good result. Does that mean, my cogntition is pretty ok? What are you doing to check yourself?
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
The cognitive symptoms are my main problem, since I don't really have any physical ones. I don't think ME has dropped my IQ. The main problem seems to be finding the mental energy to deal with significant tasks. I just don't have the energy to hold focus on a problem; my mind keeps drifting sideways.

Maybe there are tests for ability to concentrate?
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I was able to make it through and achieve quite a good result. Does that mean, my cogntition is pretty ok? What are you doing to check yourself?
When I first became sick I had a neuropsych testing done because my abilities felt so diminished. But I suppose I'm smart because my results weren't as terrible as I had thought they would be. I wish that I had completed a neuropsych battery before I had gotten sick, because then the scores could be compared apples to apples.

However, an overall IQ score doesn't really tell you much (both in my case and in general--this is speaking with my special educator hat on). In looking my subtest results there were some areas of weakness that really stood out. Although most of my scores were in the 90th percentile, on certain subtests of functional memory, working memory, attention and concentration I struggled a lot and my scores were much lower than would be expected. Depending on the tests they ranged from the 25th percentile to the 80th percentile.

And are there ways to objectify?
Maybe there are tests for ability to concentrate?

There are a variety of different subtests that can test different types of memory as well as the ability to concentrate. Some of these might sound familiar, like recalling lists of words, letters and numbers; well as sorting, sequencing, and manipulating lists of words, letters, and numbers; reading the names of colors that are printed in different colors (ex: blue, yellow); recalling detailed stories; reproducing pictures of complex shapes or designs, being shown a picture and then being asked to recall specific details, etc (I know there's more, but I can't remember them at the moment)

I don't think that ME/CFS diminishes your overall intelligence or intellectual potential (not permanently anyways, but perhaps at times when you're exhausted). But if you have a full and diverse battery of tests, it can reveal specific areas where your brain isn't quite working as well as it would one would expect based on your overall score.

A slightly unrelated postscript: the psychologist who performed the testing diagnosed me with depressive disorder with somatic features, and recommended that I receive counseling, anti-depressants, participate in group therapy, and focus on self-care. Sigh. Getting that report felt like getting hit by a truck (emotionally).
 
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Rufous McKinney

Senior Member
Messages
13,249
Getting that report felt like getting hit by a truck (emotionally).

Sorry to hear that happened.

I've been somewhat wondering what happens if its neurologists who we have to see for the CCI and neck issues, but then they are also the ones who sometimes diagnose things as somatiform, functional etc.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I've been somewhat wondering what happens if its neurologists who we have to see for the CCI and neck issues, but then they are also the ones who sometimes diagnose things as somatiform, functional etc.
My guess (and I'm not in the best position to psychoanalyze doctors, but here goes) is that confirmation bias comes into play a lot. If the doctor has a preconceived notion about what your problem is (which can be based on their education, background, and experiences, as well as your appearance, age, gender, or notes taken from another doctors), then whatever result they get they are going to interpret in a way that confirms what they expected to find.

I thought that the psychologist I saw would look at the data from my test and conclude that I was having a problem that affected certain areas of cognition. Again, wearing my special educator's cap (I read a lot of intelligence test results), that's how I interpreted the data. But that's certainly not how he saw things.

I wonder if anybody has done research on what specific cognitive effects ME/CFS has on patients. Maybe by doing neuropsych tests on a large group of us and seeing the similarities? Or, to make it even more interesting, but doing neuropsych tests on a group of patients who are in the throes of PEM?
 

Rufous McKinney

Senior Member
Messages
13,249
Or, to make it even more interesting, but doing neuropsych tests on a group of patients who are in the throes of PEM

Like the nite I'm in the Hilton, and its 9 pm and I'm exhausted from traversing to the location and have to go on a plane the next day and have to register a boarding pass, and I can't find the letter "R" on the keyboard. Its just not there, I cannot find it.

wow.

Then there is the novel I probably won't be writing, on my 48 hours on Zoloft. I recall it took like two months to recover from those two days.
 
Messages
65
One cognitive issue I have is finding things. When I am crashing or crashed, I can have trouble finding something that is right in front of me. I recently discovered an interesting correlation. I have always liked Sudoku puzzles, and in the past I could solve them easily. Since getting sick, I got a book of Sudoku puzzles to help pass the time. When I am especially exhausted (from running an errand, say) I can't solve the puzzles because I keep making errors. I look to see if a particular digit is in a 3x3 box, don't see it, add it in, then much latter see the error. It's the same problem that makes it hard to search for things at home.

The Horne Bateman Center has been working on testing methods for ME/CFS symptoms so that they can use these methods to measure the effects of treatments. They have a smartphone app that was developed to test cognition with stroke victims, and they say it is pretty effective at measuring the cognitive effects of PEM. They are also working with a local university to develop a device which measures how much time a person spends upright, sitting and lying down.

Here's a brief overview of this work. I had seen a long video of a talk by Suzanne Vernon, Bateman Horne's research directory, but I can't find it. It might be this one.
 
Messages
65
The main problem seems to be finding the mental energy to deal with significant tasks
This is my biggest problem. I seem to have levels of exhaustion. There is just lying still with my eyes closed. Then there is doing an easy puzzle like the Jigsaw puzzles at the New Yorker website (you don't have to be a subscriber to play) , then there is reading headlines. Reading anything more demanding only happens occasionally and trying to do things like schedule appointments or go through the mail is usually beyond me.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I was in a ME/CFS study which do lot of neuropsych testing done (It was done as part of quite intensive ME/CFS study of all different things eg MRIs with contrast, eye scans and other things), when they published I dont think they published the stuff on the neuro testing results or not much on that area).

The specialist doing the test was completely shocked at my neuropsych results.

I started off great but my brain to exercises where a normal person would improve at it.. I went downhill as my brain got more and more burnt out. In the end I couldn't even say all my colours right and was calling yellow "red" and doing things like that.

Also if someone shows me some cards to memorize.. the more times I go through the set trying to memorize with retesting... the worst I get due to loosing my ability to think. I didn't improve like would normally happen with a healthy person studying something and trying to remember.

There was also some neuropsych testing I did great in and other things were terrible due to ME/CFS so it appears only specific functions are mostly affected.

I think one could only say something was pathological if you are getting issues out of what is ordinary. If you can mentally challenge yourself and not get mental fatigued and are not struggling to function brain wise with normal daily living stuff.. I'd think you were fine in that area as far as far as ME and brain issues go.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Since Long COVID came on to the scene, the term "brain fog" has changed from being a somewhat exclusive term to the patient community to a term that is being used by society in general.

The result is that it has lost its medical meaning entirely and become just a synonym for "forgetfulness".

Prominent ME advocates now say that it is time for the ME community to start saying "cognitive dysfunction" instead of "brain fog":

 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
In the future, neuropsychological testing may be replaced with electroencephalograms (EEGs)!



Related article:

Central Autonomic Network Disturbance in People with ME: A Conversation with Dr. Mark Zinn

https://phoenixrising.me/myalgic-en...fatigue-syndrome/mark-zinn-autonomic-eeg-pem/

Along with his wife, Dr. Zinn pioneered the use of advanced electro-encephalography (EEG) techniques in the study of ME. EEG is a non-invasive, inexpensive technique to record electrical brain activity using electrodes placed on the patient’s scalp.

Specifically, he has used an advanced EEG analysis called exact low-resolution electromagnetic tomography (eLORETA), which produces three-dimensional images of electrical activity in the outer portions of the brain.
[...]
Bronc:
How did you seek to measure post-exertional malaise in the participants of your pilot study?

Dr. Mark Zinn:
To study post-exertional malaise, we decided to record the participants’ EEG before and after performing moderately strenuous exercise involving a basic handgrip challenge.​
A defining aspect of PEM is that it often lasts 24 hours or more. So we had everyone come back the next day and measured their EEG again to assess for changes that might occur after a 24-hour period...​
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I hope that someone with the right expertise can tell whether the changes in EEG signals, or the changes in white&grey matter, are likely due to changes in astrocyte function. It does seem at least possible.
 

Rufous McKinney

Senior Member
Messages
13,249
The specialist doing the test was completely shocked at my neuropsych results.

your results sound like what would be my results. Not sure what the psych part of all that is....

I can readily pull facts and information out of my brain pretty often, in short lived bursts.

Prolonged thinking is a wipe out. Planning.

And then if you've crossed over the threshold- now you can hardly think, period.

And nothing like when a loved one starts hollering at you, during such events.
 

Woof!

Senior Member
Messages
523
Like the nite I'm in the Hilton, and its 9 pm and I'm exhausted from traversing to the location and have to go on a plane the next day and have to register a boarding pass, and I can't find the letter "R" on the keyboard. Its just not there, I cannot find it.
Hey, @Rufous McKinney. I just found this post from 2019. Oh, I sooooo can relate! It reminds me of a time not very long ago when I spent many minutes just staring at a spoon next to my kitchen sink just wondering if it would be a good idea to move the spoon into the sink. I knew then it was time to lie down and rest, regardless of whatever else was going on.
 

Centime Tara

Senior Member
Messages
176
When I first got sick (4 years ago, after a virus) I was alarmed by my cognitive problems and got myself tested by a neuropsych doctor. I scored much higher than I expected—within the normal range for someone my age. I repeated the tests this year because my symptoms are so much worse—can’t find words, lose things, can’t concentrate, forget everything, etc. etc. The tests did show a slight decline in concentration and memory but my IQ went up. Go figure. I think these tests are sophisticated guesswork, based on what’s determined to be normal. The tests did not reflect the reality of my experience.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
The tests did show a slight decline in concentration and memory but my IQ went up.
A person's overall IQ score isn't terribly valuable and doesn't tell you much (don't tell the folks at Mensa I said that, but it's true). You gain more helpful information about your cognition by looking at the relative highs and lows of your subtest scores, and also where your scores have changed over time.

And also bear in mind that a neuropsych test score can only reflect your ability to take that one test in one setting at one moment in time, not your ability to perform similar tasks in the real world when you're not necessarily concentrating on them in the same way. There's a big difference between being able to recite ever-longer strings of numbers while sitting in a doctor's office and actually remembering where in the world you put your keys.