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Brain fog: The Research

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 27, 2013.

  1. Simon

    Simon

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    Just had an email for Susan Cockshell sayinig she enjoyed the blog, and, more importantly, the patient comments on this thread, adding that "it is the patients that help provide some of the greatest insight into the condition ... they know what they are experiencing." Would be great if all researchers thought that way.
    biophile, Valentijn, ukxmrv and 2 others like this.
  2. SOC

    SOC Moderator and Senior Member

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    I had a greater variety of cognitive problems when I was more ill. Word-finding was a very prominent one and one I've heard other patients with ME mention. I was a little surprised it didn't come up in this study.

    I'll be interested to see Ms. Cockshell's post-test fatigue study results. Mental exercise fatigues me as much or more than physical exercise. Cognitive problems also show up first (or very early) if I overexert. I wouldn't be surprised to find that's true of many of us.
    rosie26, Simon, ukxmrv and 1 other person like this.
  3. SOC

    SOC Moderator and Senior Member

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    I agree that measuring the change in cognitive function (if only that were possible) from pre-ME to post-ME would be more meaningful. My husband frequently points out to me that the cognitive "impairment" I complain about now is the normal state for many healthy people. He says I'm just frustrated because I can't perform cognitively the way I used to, not that my cognitive function is substantially sub-par for humans in general. I think he has a point.

    Those of us in high mental demand fields -- law, medicine, engineering, to name just a few -- find ourselves unable to work due to a reduction in cognitive function as much or more than the problems of reduction in physical functioning.
    alex3619, ahimsa and Purple like this.
  4. searcher

    searcher

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    My limited experience indicated that the neuropsych tests do a pretty good job of comparing the areas where we have big deficits (our "brain fog") to the areas that have stayed mostly intact and reflect our original IQs (verbal skills and other areas that don't require working memory.) I wish getting the tests done weren't so incredibly expensive.

    I participated in a research study with Natelson more than a year ago that included a specialized MRI, a spinal tap, and some neuropsych tests. One of the tests was the ROCF (I didn't know the name until reading this thread.) I copied the drawing slowly but, I am pretty sure, accurately. When the test-giver removed the original drawing and asked me to re-draw the figure 30 seconds later I could only draw one big square. I am pretty sure 99% of the population could do better than I did. The neuropsych tests also include basic IQ tests that theoretically establish a pretty good baseline; I had to read a list of increasingly difficult words and I think I did as well on that test as I would have pre-illness.

    There was one additional test in which I had to watch numbers flash on a screen and click when they repeated twice-- I had to lie down after 10 minutes because my brain lost all ability to process information when trying to do that simple task. I studied computer science in college but find programming almost impossible to do now and I think the difficulty of the simple n-back test shows why. I likely could do basic physical work better than I can do mental work right now.
    Simon likes this.
  5. ahimsa

    ahimsa Senior Member

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    For patients with some type of orthostatic intolerance the results would probably be different if you tested them standing vs. sitting vs. lying down. I joke that I gain 30 IQ points just by sitting down, and probably another 20-30 points by lying down. Oh, and closing my eyes. I screen out the extraneous data that way and I can think better.

    Pre-ME/CFS I never had to close my eyes to think, never had trouble with too much input, and so on. But now this is a major problem.

    The other variable is how rested I am. In a crash I get pretty brain dead with trying to talk. But after a few days of resting my brain gets better again. I'm not sure how much of that is just what would happen to anyone feeling sick vs. specific to ME/CFS patients.

    My most obvious area of brain fog is word finding. Abstract words are not so bad. I used to say that when I was having aphasia I never had trouble with the word aphasia. (Yeah, I know it's not really true aphasia, it's more like anomia or some word like that...too tired to look it up right now)

    Similarly in my work environment, I never had trouble with words like algorithm, schedule, module, variable, or any similar abstract words. Since those were the majority of my discussion with my peers I didn't run into this problem all that much. I took lots of medical leaves, reduced my hours, etc. but I was able to deal with the brain fog okay. I was able to keep programming and I found lots of ways to compensate.

    But concrete items were always a problem. So at work I might say something like, "Hand me that.... ummm... black, square, holds data, it's right there.... DISK! Yeah, the floppy disk. Thanks."
    Simon likes this.
  6. tatt

    tatt

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    I'd second the compare me before and after ME issue. I used to think more clearly than most but at my worst would go into the kitchen and forget why I was there. I'd sometimes forget a word. A gluten free diet cleared it but I'm not coeliac. I suspect it reduces inflammatory load and allowed something to (partially?) heal. Hard to tell if my continued inability to both concentrate and to think as clearly as I once did is increasing age or continuing illness.
  7. alex3619

    alex3619 Senior Member

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    Yes SOC, in some ways I function mentally more effectively than the average person, though not in others. This leads many to think, I am sure, that cognitively I am OK. Someone who is intelligent and interacts pro-actively can't have anything wrong with them.

    I don't even know what my full mental faculty is any more. Its far more than I have, I can see that during the rare improved times, but by how much? Being physically exhausted or in moderate pain wouldn't stop me working from home as a programmer. Being unable to count or do simple math much of the time, and often getting it wrong, its a killer to programming.
    biophile likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    Aside from crashes, my cognitive problems are a result of orthostatic problems. When laying down all day for several weeks ( :eek: ) due to a bad OI episode where I couldn't sit up, my thinking improved dramatically. Too bad laying down all day is so boring and uncomfortable!

    Also starting on an NRI which helps my low blood/pulse pressure problems has had a huge impact on my cognitive issues, not just on orthostatic intolerance itself. Basically I can think pretty clearly most of the day now ... read books, play complicated games, etc.
    ahimsa likes this.
  9. Simon

    Simon

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    Comparing now vs pre-illness/IQ issues
    Cognitive performance correlates with overall IQ, and many studies explicitly compensate for this. As searcher says
    Susan Cockshell's latest study certainly took IQ into consideration, while the large (n=>300) Thomas study I mentioned used National Adult Reading Test scores "to measure pre-morbid intelligence'.


    Impact of Orthostatic intolerance on test performance
    There was an interesting study done on CFS patients with POTS that found CFS patients response, but not controls, got worse as they got more upright in an n-back test, concluding " Increasing orthostatic stress impairs neurocognition in CFS subjects". The results indicated the problem might be with how brain blood flow responds (or not) in response to orthostatic stress.
    SOC, ahimsa and Valentijn like this.
  10. Enid

    Enid Senior Member

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    I have a feeling there are different stages too depending on the damage (or whatever) sustained at any one time. At the severest I could not recall names nor even recognise a plug in the sink with slurred speech and delayed understanding of anything said to me (though strangely going over it later "processing" was normal). My brain MRI revealed "high intense spots" so I do know there is some brain "damage" involved - for now vocabulary, memory and greater processing speed is vastly improved - why I don't know except following all the accepted ME supps by those in the know, though quite some time "locked in", and very "black holes".

    We really do need the new generation of Neurologists to identify - viral, bacterial, impaired blood flow, lactic acid build up etc.
    ahimsa and Valentijn like this.
  11. PennyIA

    PennyIA Senior Member

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    I know that this problem has gotten way worse for me over the past few years. I just stop midsentance and can't for the life of me remember what word I need to use, let alone how to describe the physical object that I want to find the word for. It's like that section of my memory just had a hard-drive failure.

    And, to be honest, I've spent a lot of time thinking that my current condition started in the summer of 2005. But as I look at my sons and see their health ailments get worse, now I remember that there have been a lot of times in my youth where I wasn't healthy and there wasn't an explanation - but I just attempted to power through it. During my 20's I would commonly substitute two or three words in a sentence with a separate word without even realizing it. So, if I wanted my son to put the pot on the table. I might say something like 'Dog, get the can and put it on the couch'. And then wonder why he didn't do what I asked him to do. I think there have been small clues to my future state for decades now that I look at it and understand myself better.
  12. Eliza

    Eliza

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    Because of my memory problems I wanted to do a neuro-cognitive test.
    I had to do a few hours of serious testing.
    The psy-lab I went to is known for extensive testing with specific "cfs" testing possibilities.

    My results were a bit what I expected, but I was surprised of one thing:
    I really like doing the kinds of tests mentioned above. I focused totally and wanted to get things right. And I did. Hardly made a mistake, both in maths and in word-tests.
    The surprise was: I thought I was quick but ... I appeared to be slow (!).
    If you know what I did for a living before I got sick you would be surprised too.

    The other thing that they found was that my memory problems are problems of imprinting (don't know if that's the right word in english?). When you're not able to soak things up from the start, you won't be able to retrieve a memory of something. That could explain the "wholes" in my memory.

    The third thing that was very obvious from testing was that I used all the resources and brain "tricks" possible, to be able to perform the tests.
    When I had to do a test where 2 things had to be done at the same time (crossing certain numbers in a list + counting the fire shots I heared). Others (healthy people?) can do both at the same time. Whereas I compartementalised the 2 tasks. I stopped crossing numbers to be able to count the fireshots and then went further to cross the numbers they told me to cross in the test.

    They also "saw" that I went pale and was really exhausted very soon after the start of the tests. Whereas I did my utmost best to perform well and tried not to show the effort I had to put in.
    The just "saw" it ... I fysically showed signs of exhaustion, far too soon ...

    So, what was the conclusion:
    - I use all my brain resources to perform (they couldn't learn me any braintricks I didn't already use myself)
    - I use all regions of my brain whereas others don't have to do that
    - I'm far slower than normal, although I still perform very well (almost no mistakes)
    - My memory problems are problems of "imprinting" (I should take fotos of everything and every place I go to they advised me ...)
    - I get exhausted and drained out very very quickly
    - I'm not able to "multi-task" in a normal way

    these results correlate perfectly with what I experience. i'm able to concentrate, able to write ver good campaign-letters, able to translate and read very complicated (scientific) tests. But I forget the things I read immediately after reading, I forget things that are asked of me, I forget places we went to, ... And when I focus on something I "get it" very well but it drains me out very very quickly.

    I had these extensive tests done at my own initiative and at my own expense.
    I wanted to "get" what I felt was wrong with my former high-functioning brain.
    Little Bluestem, Simon and Valentijn like this.
  13. Simon

    Simon

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    You might be interested to know that with most cognitive tests. there is a trade-off between speed and accuracy. In research, CFS patients usually do very well on accuracy on 'self-paced' tests, but less well (relative to controls) on fixed-speed tests.
    A few studies now have found, using fMRI, that CFS patients use (activate) more brain regions than healthy controls to accomplish the same cognitive tasks to the same standard.
    That's interesting too (and not just because i have the same experience :)). Which is why Susan Cockshell's latest study will be good to see since it measures fatigue after testing as well as before. Would be good to have some sort of 'in-test' measure of fatigue too, to capture what your testers 'just saw', since it may be one of the most important differences between CFS patients and controls.
  14. Leopardtail

    Leopardtail Senior Member

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    I have noticed that if I am given saline (thus improving total blood volume) that I can feel the increase in blood flow to my head and for a while my brain works normally. One of the 'adrenal' benefits of liquorice root is better availability of Aldosterone the adrenal hormone that helps retain water (and therefore blood).
  15. Leopardtail

    Leopardtail Senior Member

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    @Simon

    you have clearly done a lot of systemic reviews, have you every published any?

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