Discussion in 'Cognition' started by anciendaze, Aug 17, 2017.
Gee, when I told my doctor I was suffering from an eerie lack-a-wanna, he groaned.
Significant working memory impairment (to the point where I can't even hold a phone number in my mind long enough to dial it, or add a couple of numbers without a calculator) is by far my worst symptom at present. There are big stretches of time when my physical functioning is not terrible and I might be able to have a sedentary job IF I didn't have cognitive impairment. In hindsight, it began in my teenage years. By mid-20s it was already severe. This makes sense since WM is a very energy-consuming process so you'd expect it to be the first thing to go as the brain's redox status deteriorates which could be creeping up on you for years before any full-blown physical crash arrives. This symptom shows a great deal of variability depending on my energy status and sometimes - rarely - the stars align and my brain functions like a well-oiled machine for an evening and it's truly marvellous and encouraging. Then the next morning I wake up submerged in the fog again. I think this symptom is reversible if they manage to figure out how to restore energy metabolism.
Anthony Komaroff may have already figured out a big part of this in his spectral coherence paper on ME. The brain has to have synchronous activity in various areas for effective functioning. Our brains have a big enough delay to be somewhat asynchronous.
@alex3619 What is spectral coherence? I do understand that the brain has to be coordinated, like a soccer (football) team moving the ball down the field. But how was Komaroff assessing the coordination? Was this via brain rhythms/speeds in different parts of the brain? Maybe you could offer a link to his paper too. I apologize for asking you to work so hard!
@Woolie , is there a simple way to explain spectral coherence? My knowledge is limited and I might get some things wrong.
To my limited understanding this is a putative measure of how different parts of the brain operate together. Its not so much about signal delay as consistency, that is how variable the delay is. I don't know enough to accurately make detailed comments.
I used to be a computer programmer. I could hold multiple potential software elements in mind, track interrelations, follow sequences and try variations. CFS/ME blew my working memory to bits and killed my career. It has also affected my long term recall. My working memory and brain fog have been so dismal at times that I could have been mistaken for someone with a severe mental disability or brain damage.
Over the past few years I've found the following supplements help to improve my working memory and mental energy: methylB12, methylfolate, Terry Naturally Clinical Glutathione, flax oil, and LDN. Recently I've also found that proteolytic enzymes are very helpful. From what I've read, almost every one of these supplements helps to reduce inflammation.
Other things that help: staying within my energy envelope (most important), improving my sleep quality (more supplements), and avoiding flourescent and LED lighting (both increase my brain fog and cause other effects.)
My brain fog has been a lot worse during the last 2 years or so, and even worse during the last couple of weeks after I started glutamine for other reasons. We've talked about this elsewhere, but some studies show it helps remove or lower ammonia (which has a connection to brain fog or cognitive dysfunction), while others like this one involving hepatic encephalopathy, this particular quote caught my attention:
"In hepatic encephalopathy, the Alzheimer type II astrocytes are the main neuropathological alteration, characterized by swollen cellular nuclei, with their chromatin displaced to the periphery. The accumulation of glutamine, a product of ammonia detoxification generated within astrocytes expressing activity of glutamine synthetase, is a major factor for the swelling of astrocytes."
So I'm going to regretfully stop the glutamine for a couple of weeks, and see if things improve.
Noted in that study above, and others, carnitine has shown benefit for brain fog, and I just found several studies which found an association with low vitamin D and cognitive dysfunction. Here are two...
It's likely that many of us may have suboptimal D status, especially if we're housebound. I just had mine tested last week -- it came back at the rock bottom end of 'normal'.
Working memory as in the first 7 seconds is the bit that's broken when fatigued.
(Mutter it over and over if moving so you don't forget why you moved)
Language and sentences, broken when fatigued
(I studied 3 languages to univstity level and 2 more learned with ease by taking advanced and beginner classes simultaneously, read Chaucer at 10 etc, mathematics was half of my other degree).
Now just jumble random words that relate to the topic (sometimes same category but not at all what I mean) or stare blankly, knowing what I want but no words working.
Some words just won't come, work around, clumsy.
But route-finding puzzles (not especially good in the past) completely unaffected.
Can do spatial puzzles, if I remain relaxed and not putting effort in, even in a crash.
(Although my finger might twitch off the thing I aim for)
But I can't tell you what my finger is.
Sometimes I open a familiar app and can't recognise the compose email button.
I know it must be there but it isn't. wonder if it's .... forgot what I'm saying.
If it's language and if it were a symbol I'd see it?
But it can't be Alzheimer's because sometimes I'm fine, so long as I don't overdo it.
Pacing pacing pacing.
I first began having memory problems in early 2013 ( I was in my early 30's at the time) while working part-time as a teller at a bank. I started noticing that I could not for the life of me record to memory very simple computer procedures I was required to do daily. I would have to ask my co-workers for help repeatedly and/or make little notes. This was soooo out of character for me. Just a few years earlier while completing my bachelors degree one of my college professors had said I was ready for graduate level study, and here I was a few years later suddenly not able to memorize a simple computer task!
Looking back it now seems that it was at this time that I first began to have ME/CFS symptoms as with the decline in memory I also was experiencing fatigue unlike I had ever experienced before, although compared to the level of fatigue I have now it seems like barely anything. My memory and ability to process information/thoughts has definitely worsened more as my ME/CFS became more and more severe. I've tried to explain it to doctors by saying that when I am having difficulty retrieving an answer, a piece of information, etc from my memory it's as if I can sense that it's in there somewhere, but that the "files" are all jumbled up and bouncing around at the same time which makes it impossible to grab a hold of.
Actually for short term task I don't have huge problems. I could make a short phone call without anyone noticing I am so sick. Also, I make meals, clean the apartment but then after 2 days I feel so bad (like my head is empty without brain cells) by not only having pem but also clinical depression with guilt that I want to kill myself.
I'm still in the process off moving to a new location, and will likely be off-line for a while to recover afterward.
Added: Just a coincidence, but the actual movers will be here tomorrow morning, Saturday September 9, 2017. This also happens to be the day hurricane Irma makes landfall in South Florida. I'm expecting it to weaken a little before it reaches Orlando. Still this is going to be a memorable weekend. Recovery will involve people besides me.
After that I will see if I can pull my thoughts on this subject together. I've been working on a piece about how not just ME/CFS, but the entire field of psychiatry tends to be used by other members of the medical profession as a dumping ground for unpromising cases without convenient clinical signs. There is evidence of huge biases affecting the majority of these professions.
Another theme I intend to explore is the way medical people tend to avoid a range of measurable changes indicating temporary cognitive impairment. Changes in working memory would seem easy enough to measure. The problem is then ascribed to emotional causes, ignoring the possibility that physiological impairment can produce cognitive and emotional problems, as happens all the time with the elderly.
The brain is one of the major consumers of metabolic energy. It is also a highly vascularized organ. This is where you should expect subtle problems with metabolic function or vascular response to changing conditions to show up, yet work like that by Naviaux at UCSD or Systrom's group at Women's and Children's Hospital is so rare as to be almost unique.
This is a general problem with the entire profession, not limited to individuals who happen to be treating you, or to specialists like psychiatrists. Nor are the only victims those who end up in places like this forum. Entire lives can be wasted by missing treatable problems that just don't fit in preconceived categories until the damage is irreversible.
Just as an example: how often do you hear about a neurologist who actually cured a patient, returning them to full health and complete function?
I do that too!
People think using lists and reminders should entirely compensate for poor memory. While I do find it somewhat helpful it's the working memory dysfunction that makes the system unworkable. I want to put a date in my calendar or an item on a shopping list - I pick up my phone and can't remember what app I wanted to open or why.
I could have written this (in fact I checked to see if it was my post )
Not sure if this counts as working memory.
I was not too bad on guitar and music generally, including small a cappella vocal groups.
But from the day I got sick my musical timing and structural memory was compromised, in a very specific way: I would frequently come in a touch late on changes between sections or the start of a new phrase, etc, even for pieces I knew very well and knew exactly what was coming.
A kind of a hole in the audio-motor memory or processing functions.
Still happens to this day. Compounded, no doubt, by the more general concentration deficits.
So much for the music career.
@mhrps Is your depression due to the severity of your ME or have you always had depression as another illness? I only get depression when my ME is severe, so it's situational for me. I just wondered if that was the same for you.
Also, you described just how it is with the exertion on a better day and then paying severely for it. I can do a bit more than I used to now. So, do hang in there and rest as much as you can because the rest is what helped me the most.
I have always had ME and before I suspected I had something like low grade chronic depression called dysthymia. But I was always motivated, did not have symptoms of classic depression, so now I think it was just ME (my throat was always inflamed). Nowadays I do have full blown depression but only along PEM which begins ca 24 hours after exertion and lasts 3-4 days.
Excellent discussion. Good luck with your move!
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