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Cognitive Functioning in People With CFS: A Comparison Between Subjective and Objective Measures

Discussion in 'Latest ME/CFS Research' started by Bob, Dec 25, 2013.

  1. alex3619

    alex3619 Senior Member

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    Some depression symptoms are probably due to cognitive issues, and so the two are conflated. So its quite possible people get diagnosed with depression who have other things wrong with them instead (no, how could that happen?). I suspect depression is way too overdiagnosed. The argument basically is if it might be depression it must be depression, and please don't confuse me with the facts.
     
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  2. Hip

    Hip Senior Member

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    The issue of reliably and objectively measuring your current level of cognitive dysfunction is the subject of this thread:

    How to best gauge levels of brain fog & fatigue

    I'd like to find some easy, fast and accurate way to objectively measure my brain fog level.
     
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  3. alex3619

    alex3619 Senior Member

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    You and nineteen million other people, probably a 100 million if you count fibro fog. Why after more than half a century don't we know this stuff? (Rhetorical question.)
     
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  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think it would be that objective tests of cognitive dysfunction suck raw eggs.

    Sitting in a quiet, well-lit room taking a test is nothing like living life all day, every day. For people with cognitive dysfunction, I am not sure subjective tests are much better. I could not tell you how many mental lapses I have experienced today, let alone in the past week or month.

    I think the best thing to do would be to give people small (tape?) recorders, and have them record a short description of every cognitive dysfunction they experience over several days.
     
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  5. SOC

    SOC Moderator and Senior Member

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    That wouldn't work for me. I often don't realize, in the moment, the majority of my cognitive failures. :bang-head: It isn't until later, when my cognitive function has improved that I realize how bad it was. Or someone around me points out my problems while they're happening. :cautious: Maybe it's good to be blissfully ignorant while it's happening. Maybe.

    I remember when I was first diagnosed by an ME/CFS specialist. She asked if I had cognitive dysfunction and I said no. :oops: Then I proceeded to fail, dismally, even the simplest of cognitive tests. :aghhh: It was a shocking eye-opener.
     
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  6. alex3619

    alex3619 Senior Member

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    I can relate @SOC. I had a positive attitude toward my cognitive function, then during university study there were times it failed. Every time I became aware of an issue, then promptly forgot about it. Its only because I had hundreds of issues that I can recall that I had tthem, but they all blur in together.
     
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  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    If the person had the recorder for several days, some of that later realization could occur. It might not be perfect, but I think it would be better that asking a person to describe their cognitive dysfunction while sitting in an office.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think I am pretty good at determining when I am depressed and when I am not. I have had spells of depression in my life and have recognised what they were. I can still tell if I am getting that way, and can rationalise whether the feelings are appropriate in a given situation or not (e.g. bereavement). That's why I find long lists of questions to determine whether or not I am depressed irritating.

    They only need to ask me one question: Are you depressed?
     
  9. taniaaust1

    taniaaust1 Senior Member

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    Im currently in a ME/CFS (canadian consensus definition) study (which hopefully will be published soon), which one aspect of it is cognitive and memory functioning and had to do that Stroop test for it. It was sooo hard.

    I couldnt even get the two example practice words right so the researcher started to explain to me again what I was supposed to do.. I was like "I know that already and are TRYING to do that". When I finally got the two practice words right he then to my horror pulled out a whole page of these words which was this test. I was crying a bit by the end of this test as it was torture!!!

    I even ended up saying colours which were nothing at all to do with the word I was trying to read at all eg said green for something which said red but was blue. I was just trying soo hard that my brain broke down on me and hence had words coming out of my mouth I wasnt even meaning to say. Interestingly I even at times said the wrong word I think up to 4 times as thou I'd end up working out what it was meant to say as I knew after getting it wrong first time that I got it wrong (when I was sometimes told), I still couldnt say the right word for it while my brain was distracted with the discrepancy.
    ...............................

    I do think our cognitive issues are very testable if one uses the more severe ME group and do THE RIGHT tests to show our issues eg some tests I do very well in, while others, I certainly dont with the ME. Also the thinking tests need to not be just done once but over and over which then shows how we 'burn out" with thinking and instead of improving actually get far worst. My result with some tests was soo shocking.

    Interestingly I could do visual memory tests with card prompts for recognition but not ones at all in which I heard a suscession of words said to me and had to then remember what I'd heard (in any order) .. I got by the end of it only 4 out of 50 words right due to brain exhaustion.. as the beggining of this test I got something like 8 (maybe more right) and even with using the same words, just got worst and worst). A normal person would of improved the more this test was done on hearing the same words repeated and not gone backwards the more times the words one had to remember were read out. This was a great test for showing the decline of our brains.

    The neuropsychologist by the end of that test.. was feeling extremely sorry for me.

    Anyone this study is finishing soon.. so hopefully we wont see it published too far in the future, Im sure the others would of had the same issues I did.
     
    Last edited: Dec 28, 2013
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  10. biophile

    biophile Places I'd rather be.

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    I get suspicious of studies that come out apparently reporting that a key feature of CFS is only a perception. Research is supposed to control for biases from both the subjects and researchers, but there are some features of CFS which I would be reluctant to accept at face value do not exist, and I would first question the paper before questioning the existence of the phenomenon. This is CFS afterall, where inadequate research practices seem pervasively routine.

    I think there are even a few studies which put patients though an exercise test and they basically reported no symptom exacerbations or activity reductions as a result. If you are a patient who has crashed countless times from physical activity, you just know from the deepest recesses of your heart that it can exacerbate symptoms and reduce activity, and no amount of poorly conducted papers on unrepresentative cohorts will sway you into believing otherwise.

    We always knew, from personal experience, that deconditioning was an inadequate explanation for primary disability in CFS. Research is showing us to be correct about that. I think we will be generally correct about other things too.

    Similarly, if you are a patient who has brain fog which makes you struggle to do anything, difficulties reading and writing, make clumsy mistakes and take hours to finish a simple post, or crash from reading articles, or at times can barely even remain conscious let alone conduct a cognitive test, you cannot accept that you have "normal" cognitive function.

    There is previous research studies showing cognitive impairments anyway, although IIRC the association between subjective and objective measures is not particularly consistent across studies. There are multiple possible explanations.

    As wdb mentioned, subjective measures may not be reliable. As Bob mentioned, patients may try extra hard to do the same work (and Simon linked to brain scan evidence of increase neural recruitment which suggests this could be the case and it certainly feels like it subjectively too with a cost). As MeSci mentioned, the cognitive impairments may vary at different times. As Snow Leopard said, they need to control for pre-morbid intelligence (which is difficult). As alex3619 and Simon suggested, the tests may be inadequate to detect the problems we do experience in daily life. In a previous study, the deficits only became apparent towards the end of the testing, because of fatiguability. Stress testing also sounds good.

    IIRC, the correlation between fatigue severity and physical activity levels is not particularly strong either. I suspect that if true this is because fatigue is not the most important symptom and patients tend to adjust their activity levels to how much fatigue they can tolerate, so the bed bound patients and high functioning patients may have similar levels of fatigue. Formal cognitive testing does not reveal whether someone can function normal over the entire day.
     
    Last edited: Dec 28, 2013
  11. Bob

    Bob

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    Although it often feels like we're fighting a losing battle against the proponents of the cognitive-behavioural model of illness, I guess that, ultimately, it is our personal experiences that has kept the biomedical research alive, and stopped the cognitive-behavioural model from totally dominating the field. The bottom line is that patients know that CBT/GET are unsatisfactory (they have no effect on the illness itself) and so we (as a community) have fought for decent biomedical research, and we have donated, raised and lobbied for funds for decent biomedical research. The patient experience is the reason why there is such a huge amount of biomedical research is being carried out now. The cognitive-behavioural model will become increasingly discredited as time goes by.

    It seems that researchers might do well to consult with a patient group before designing their studies! I think, as a group, we might be able to give them some helpful pointers.
     
    Last edited: Dec 29, 2013
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes - I found it a refreshing surprise when @Jonathan Edwards started engaging with us in relation to the rituximab research, and showed genuine interest in integrating issues raised by us into the research. Wouldn't it be great if this were the norm rather than the exception?!
     
  13. Marco

    Marco Old blackguard

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    Just to add to the valid points already made - ME/CFS is likely heterogenous and simple group comparisons may be masking significant problems.

    I blogged on a large Japanese study some time ago :

    http://www.cortjohnson.org/blog/201...deficits-present-in-chronic-fatigue-syndrome/

    The gist was that (a) all patients showed very significant deficits in frontal lobe function (healthy controls no errors; patients 25-75% error rate);

    When each individual patient was tested using an objective measure of cognitive function (event related potentials ERP - or electrical brain response to stimuli) they were able to identify two distinct groups. One group had a statistically significant abnormally prolonged latency (time to respond) and (non significant) lower amplitude (strength of response) - a pattern normally seen in dementia (these were kids aged 9-18). The second group has a significantly higher amplitude response and shortened latency - a pattern often seen in panic disorders/phobia.

    The point is that these findings trended in opposite directions and would have cancelled each other out in a simple group comparison. In fact the simple group comparisons found no significant differences between the CFS group and controls on the ERP measure.

    Another factor that would need to be considered in addition to appropriate tests and testing under 'cognitive load'.

    In fact I wonder how many of these standard cognitive tests would exhibit acceptable test-retest reliability in a ME/CFS population?
     
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  14. Izola

    Izola Senior Member

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    Alex, why are you reading plasyic bags?;):p Iz:oops::confused: Just teasing because my initial response to anything is misunderstanding.
     
    Last edited: Feb 6, 2014
  15. Izola

    Izola Senior Member

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    I would lose the recorder or try to take photos with it.
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    If they test the more severe ME group who tire fast, even a one hr appointment would then show up the cognitive issues going on in many of the tests. I know I test quite poorly in some of those (thou some kinds of those tests I ace).

    I think what happens is they mostly use ME/CFS patients in these studies who are more able so not showing the dysfunctions up as much on testing. I wish the more severe group was ultilised more in studies if they really want to see well the abnormalities. (the ME/CFS study I was recently in, they came and picked me up as I cant drive or leave my house alone.. I wish more studies presented opportunity for ones like myself to participate..by doing that, some interesting study results should be found). No idea when the ME/CFS brain research I was in is going to be published, I guess if we get lucky we may even see it in the next year or two.
     
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  17. Sean

    Sean Senior Member

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    I have tried to answer the TV remote control, more than once, and it doesn't even look anything like my phone.

    Not my finest moments. :confused:o_O:oops:
     
    Last edited: Feb 7, 2014
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  18. alex3619

    alex3619 Senior Member

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    I might forget to use it, forget to turn it on, use the wrong buttons, or just never get around to using it. I would have to stop what I am doing to use it, find it - especially if I put it down somewhere that was not obvious; pick it up, switch it on, then remember what I was going to say after all that, then put it back somewhere sensible after I have used it. I have a small text file on my computer screen, right in front of me, and I forget to use it a lot. I now keep my keys on a lanyard around my neck if I think I might need them ... so I don't have to go looking for them in a hurry.
     
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  19. rosie26

    rosie26 Senior Member

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    I hid something on purpose in the house 2 weeks ago, I hid it very well because I haven't been able to find it since. I have no idea where I hid it. I obviously chose a place that I have never put it before and that was a big mistake.
    It's a mystery.
     
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  20. Bob

    Bob

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    I think my worst cognitive moment was to leave my home without my keys, wallet or phone.
    I couldn't get in my home, I couldn't phone anyone, and I couldn't go and get drinks or food or sit in a cafe because I didn't have my wallet.
    Luckily it was late afternoon, and I only had to wait a couple of hours until my flatmate returned.
     
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