1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

How to best gauge levels of brain fog & fatigue

Discussion in 'General Treatment' started by Hip, Jan 30, 2013.

  1. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    Nearly everybody on this forum experiments with various different supplements and drugs, in order to try to ameliorate their ME/CFS symptoms.

    Most of us try to gauge the effectiveness of the supplements and drugs we take just by subjectively noting whether our symptoms improve while taking the medications. Typically we look out for improvements in our brain fog (cognitive dysfunction) and fatigue levels.

    However, since ME/CFS involves having a poor memory and often poor perceptions as well (we often forget what we did or how we felt even just yesterday), it can be a challenge to actually notice day to day improvements in our mental symptoms, and it can be even more of a challenge to accurately observe that you are slowly improving over a period months, due to a medication.

    In other words, since we are unfortunately relying our own compromised memory and perceptions to gauge whether our brain fog and fatigue symptoms are improving on a medication, our self-impressions and introspections are less accurate than we would like them to be.

    There is also a human phenomenon that, in periods when we do feel a lot better, we tend to want to forget the bad times that we went through just weeks earlier. This is a natural human tendency, which makes us want to quickly forget the bad times once they are over, and just focus on better times that are now here. This is all very well as general optimistic strategy, but it does make it even harder for us to remember and gauge how much we have actually improved.

    It is of course important for us to gauge how much we have improved, because it is only by noting the degree of improvements that we can work out how much a particular medication is helping us.

    For me, in spite of the fact that I faithfully note down all the supplements and drugs I take each day (in a word processor document), I often suspect that I may have failed to notice the benefits that some medication provided, just because I was not astute enough to observe the gradual improvements it delivered over time.


    Anyway, to remedy this, what I want to consider in this thread is whether there is some objective way of measuring the level of brain fog and fatigue that you have each day, so that each day you can write down a figure (say from 1 to 10) that roughly represents your brain fog and fatigue level on that day.

    If this were possible, it you could have a long term record of your brain fog and fatigue levels, and looking back at this record, you would be able to work out whether you are improving over the week or months, and also have a measure of precisely how much you have improved.

    What I am thinking of is a daily self-test that could help gauge your brain fog and fatigue level on that day. I know myself that I tend to sleep more hours during days of increased brain fog / fatigue, so the total hours of sleep that you have during each 24 hour period (including those long naps you take in the middle of the day) might be one method of objectively measuring brain fog / fatigue levels.

    But ideally there would be some sort of 5 minute online or software cognitive test that you could take each day, that would give an accurate measure of your current brain fog (cognitive dysfunction) level.

    Is anyone aware of anything like this? If it does not exist already, it might be possible to devise a test like this. Some of the people on the Phoenix Rising forum with computer programming skills might be able to help set up such a test online.

    I am thinking along the lines of a quick test that checks your ability to remember say a series of random words, for example. The test should be fast and simple, taking only a few minutes to complete, so that there is no difficulty in taking it every day, or every other day. The online test would perhaps be designed measure your short term memory abilities, your working memory abilities, your task switching abilities, and so forth. All these mental abilities tend to get compromised as brain fog worsens.

    It would be nice if this online / software test would remember your daily scores, and would be able to do such things as plot graphs of your brain fog levels over time, so that you could see if you were improving or not over the weeks, months or years.

    A test like this could also become a serious research tool, very useful for examining the fluctuations in ME/CFS brain fog that occur from day to day, for examining the improvements in brain fog gained from taking medications, and for examining the increase in brain fog that arises after exertion (PEM).

    Such a test could also become a more objective way to measure the level of cognitive dysfunction in different ME/CFS patients, so that you have an accurate gauge of the severity of your ME/CFS brain fog compared to other ME/CFS patients. Such a test might even act as a useful tool to help diagnose ME/CFS.

    Any thoughts on this idea?
     
    SickOfSickness and L'engle like this.
  2. L'engle

    L'engle moderate ME

    Messages:
    966
    Likes:
    447
    Canada
    I tend to gauge my brain fog by how many 'useable' hours I get where my brain can function as it did when healthy. The number of these hours is shockingly little however. I plot them in an excel spreadsheet when there are enough of them for it to be worthwhile doing so. Far from an adequate recording of brain fog though.

    I agree an objective set of measurements for brain fog would be useful. In order to be a diagnostic for ME/CFS I think it would have to be a lengthy test (like the overnight sleep tests) that would show one's cognitive functioning not being sustainable for periods of time that a normal person could do without a problem.
     
  3. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    For diagnostic purposes, you might have to take a test on multiple occasions, and take an average score, since brain fog level can vary from day to day, even from hour to hour sometimes.


    In terms of what to test, I think that one's task switching ability might be a good way to measure brain fog levels. Task switching is when you are in the middle of a certain task, with all the facts and figures in your head, when someone or something interrupts your activity, and you have to temporarily switch to a new task for a while, before switching back to your original task and remembering where you left off. If you have a sharp mind, you will be fully able to remember where you left off.

    I know that on a bad brain fog day, even if I am doing something really mundane and very simple, like making a cup of tea, and somebody interrupts this activity, I am liable to completely forget what I was doing altogether, let alone remember where I left off!

    I have always found that the more brain fog I have, the more disruptive I find any small interruptions to tasks I am doing. Do you find the same thing?

    So a psychometric test that measured your ability to task switch might be a good way to gauge your current brain fog level.
     
  4. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    WOW! I have just found the perfect app for measuring you mental abilities!

    There is a free app called BrainBaseline. See here:

    https://brainbaseline.com

    This BrainBaseline app software has a suite of mental tests, and it even has a test that measures your task switching abilities!

    The only problem is that this app is only available for iPad and iPhone, neither of which I have. I just have an Apple Mac computer.

    If anyone else has an iPad or iPhone, I love to get your feedback on this free app, to see if it might be useful for ME/CFS patients, to gauge their mental abilities, as these abilities vary from day to day.

    You can download the BrainBaseline app here:

    https://itunes.apple.com/us/app/brainbaseline/id408975136?mt=8
     
    L'engle and merylg like this.
  5. taniaaust1

    taniaaust1

    Messages:
    8,247
    Likes:
    5,215
    Sth Australia
    Any good test would also message long term memory too. I had huge issues with long term memory for a time too (fixed by hydrox B12 injections thou)..

    I can know how my brain is going by how many big mistakes Im making during the day... eg stupid things I say to people due to me forgetting something or my brain malfunctioning. Today I've made 2-3 of those BIG mistakes.. Ive made many small mistakes too today. I can fairly accurately work out how my brain is going by noting down the mistakes Ive noticed I've done or ones others are pointing out to me.. eg in convo today .. I said I was going to get someone to hammer some "stobbie poles" in my garden to hold some trees up. My boyfriend started to tease me about stobbie poles and I still didnt understand I was using the completely wrong word.. he ended up having to tell me.

    Another small (or maybe some would count it as big) mistake I made today was I got my boyfriend to take me to a store..and once there had to ask him what I'd gone there to get. If I didnt have him there for support.. I wouldnt have remembered.

    One of the bigger mistakes I made today was once again.. trying to check out library books with my bank card instead of library card.... and I then thought the machine wasnt working.. another had to tell me I was using the wrong card.. if I was having a better brain day.. I would of been able to figure out what the issue was myself..but today I couldnt. I also while there, while attempting to check out my things.. had grabbed my DVD holds and unknown to me had taken another persons hold. (I did work that out in the end when it wouldnt check out and then I finally saw it was only a like my name on it and not my own name).

    Anyway.. a record of major (or major and smaller) daily mistakes..tells me a lot about my brain state.

    I can also measure how Im going brain wise by the comments of others who see me at times. (last week my sister goes "Are you sure you dont have Alzeiheimers? ... I'd just made several very big shocking mistakes that day including completely wrongly measuring something and then contacting the person to get a new one and gave them the wrong measurements (fortunately they didnt have one there for me anyway.. my sister ended up via phone having to try to sort things out thou).

    A big stuff up a few days ago was when I not thinking.. allowed a store attendant to over fill my shopping basket and then I forgot about the eggs sitting on top. We ended up with 3-4 eggs over the indoor mall floor smashed everywhere (with others rolled everywhere..fortunately not broken).. Tried to scoop eggs of the floor before people slipped in the mess before hurrying out in embarrassment as I couldnt pick it all up..too messy.

    If I wanted to give myself a rating for functional ability .. I could give myself 5 points at the start of each day and take a point off for each MAJOR mistake I make.. giving myself a functional rating score. (or this could be done starting with 20 points and taking one point off for each small mistake or two points for a big error or something which was a disaster due to my brain, that day).
     
  6. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    Yes I know exactly what you mean by those big mistakes you describe, Taniaaust.

    And that is a good way of scoring your brain fog level, by counting your major mistakes.

    In another thread about brain fog, I named the type of brain fog errors you mention as "miscategorization of environmental stimuli". When you tried to check out your library books with your bank card instead of your library card, your brain miscategorized: your brain mistook one thing for another. This mistaking one thing for another seems to be a quite common occurrence in ME/CFS brain fog. Another example of miscategorization that someone told me about was answering the telephone when the doorbell rang.

    In these miscategorization examples, it is almost as if the brain's internal "focusing" is blurred rather than sharp, and in that blur, one thing looks or seems like another. I know this brain fog state of mind all too well.
     
    taniaaust1 likes this.
  7. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    I can never remember my major mistakes - not even the really funny ones I make a note of remembering.

    I'm really impressed you remembered so many, Tania, :hug: but I did notice a tiny one you made recently in the vitamin B12 thread - you used the word subliminaly instead of sublingually. Both are very big words for somebody with ME to cope with, please don't take offence that I pointed it out - I remembered it because I thought sublime was quite a good word for the effects B12 had on me.;)

    Hip, there would be a confounding variable of improvement with practise of any tasks performed - particularly if performed often.

    I don't have a clue about how to rate or measure physical states. I do not suffer from "fatigue" of any sort. My body simply won't produce enough energy to do something - it goes anaerobic and I get lactic acid pain; sleep and I are not comfortable bedfellows.
     
  8. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    Possibly, though my guess is that after a few weeks repeating the psychometric test daily, you'd plateau on your improvements, and from then on the test would reflect your brain fog level.

    Yes, this psychometric test idea is more for the mental fatigue and brain fog, rather than the physical fatigue.

    There are of course other mental and cognitive symptoms in ME/CFS that are disturbing, debilitating or just plain unpleasant. These include extreme sensitivities to noise, light or odors; depression in some cases; anxiety or panic disorder in some cases; and irritability. All these create further problems for ME/CFS patients when they are present, but none would be measurable by the brain fog psychometric test I have in mind.
     
  9. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,881
    Likes:
    962
    US
    You may be able to install an iOS simulator or emulator and run it.
    http://developer.apple.com/ipad/sdk/
     
  10. tandrsc

    tandrsc

    Messages:
    72
    Likes:
    45
    UK
    I found that a good way of measuring my brain fog level was to try and read (anything would do, book, email etc) and make a note of how far I got before the words started to merge together and my eyes started to ache.

    6 months ago I could only manage 1 or 2 sentences, but now I can manage a whole page without any trouble. The supplements are clearly working :)
     
  11. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    That's quite a good gauge.

    That sort of thing can also make you realize how you have improved since an earlier time. I can remember a period a couple of years ago where I was unable to write any emails longer than a few sentences, as I just did not have the mental energy and mental coherence for more. Now I can look back at that time and realize that I have improved quite a bit since then.
     
  12. taniaaust1

    taniaaust1

    Messages:
    8,247
    Likes:
    5,215
    Sth Australia
    Its no good making a note to remember with the brain cause yeah we then forget. If one is really wanting to observe how one is doing one needs to go and mark the mistake down on whereever one is keeping the record right away (and have that notebook with one all the time and not be constantly loosing it!!).

    haha.. it may of looked impressive but it wasnt. notice i said 2-3 big mistakes i made that day.. I said 2-3 as I'd forgotten which it was throu I'd been trying to pay attention and counting them that day. And out of those 2-3 BIG mistakes I knew I'd made, I could only remember what 1 of them was.
    I probably made 15-20 mistakes (big+small) that day all up (not including word mistakes I put in my typed posts) and could only remember the few I mentioned even throu it was in the same day.

    ohhh thanks, that is one I make often and struggle to get right. I'll try to "remember" to pay more attention with that word. lol I know I'll probably forget.

    My brain isnt going too great today.. I just had to edit this post about 7 times.]
     
  13. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    It's a pain having to edit so much! :hug: (that took 3 edits)
    You have an excuse - you've been working so hard on your garden - not just the "doing what you can" - but all the planning and plotting and organising and thinking about it. And that's on top of all the stress of the moving.:thumbsup:
    (only one edit - yay, I'm improving!))
     
  14. tandrsc

    tandrsc

    Messages:
    72
    Likes:
    45
    UK
    In case it's helpful, I just wanted to add how I gauge my general health. I make a note of the things I manage to do each day - showered, dressed, hoovered etc. If, over time, I am managing to do more then I know I'm getting better.

    A year ago I couldn't get dressed every day, but now I can. My daily list is quite short so it's easy for me to keep track :)
     
  15. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    I gave up on showering every day very early on;
    It was a choice of have a shower or do something - I prefer to do a wee something.

    vacuuming? - well I have a theory that I must have done something bad to a vacuum cleaner in a former life, because the evil things all gang up on me in this one.
    I'm very kind to the evil thing. I don't make it do much exercise, I never have. Only when the floors get *too* disgusting.

    I do get dressed every day!:angel:

    I tend to use how well I can comprehend reading to gauge how well I'm doing. If I can understand something slightly more challenging than a rubbishy women's magazine, I'm having a good day.
     
  16. Research 1st

    Research 1st Senior Member

    Messages:
    118
    Likes:
    211
    Hi Hip.

    A good way to gauge brain fog with a relatively inexpensive test would be to take a psychological assessment measuring IQ and other cognitive factors, then do a task that taxes you for a few hours or however long it takes to feel foggy, then retake the test to compare the before and after results.

    If your IQ was lowered or other problems arose you could demonstrate that activity (physical or mental) does tax your neurological functioning at an organic level. Perhaps you could add an EEG brain scan in to the mix also to see if your brain waves have become sleepy and groggy post exertion or are like this before even. This could demonstrate to skeptics you have a rapidly fatiguing illness not consigned to a psychological belief but a physical brain dysfunction.

    If people were well enough, they could add in a physical stress test too, such as a treadmill repeated over two days as has already been done in the US by the University of the pacific fatigue lab

    http://www.pacific.edu/Academics/Sc...Sport-Sciences/About/Pacific-Fatigue-Lab.html
     
    peggy-sue likes this.
  17. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    The IQ test would actually be a rather useful one, because the different tasks in it target different areas of "cognition".
    Some, which are very visual-spatial, such as copying a geometrical pattern using coloured wooden blocks, and do not require a lot of conscious effort should remain fairly constant.

    So should answering questions on history which require simple, one word answers (I know we do have trouble with retrieval sometimes, but that could be noted by the person administering the test).

    Other tasks which require memorising lists, or repeating sequences backwards, (which are likely to be drastically reduced from the normal range of ability in PWME in the first place) would show deterioration.

    I'm personally 99.99% positive that PWME would show an abnormal WAIS-R (Weschler Adult Intelligence Scale-Revised) profile in the first place.
     
  18. Research 1st

    Research 1st Senior Member

    Messages:
    118
    Likes:
    211
    I like the sound of that Peggy-sue, the 'Weschler Adult Intelligence Scale-Revised', although I don't know if I'd be able to pronounce it!

    Maybe other measures of assessing brain fog would include a brain blood flow scan, SPECT scan. I believe blood flow changes are diminished in CFS research after cognitive challenge (thinking) or it could be exercise (activity), or both.

    Certainly if less blood is inside your head then cognitive function should decline at the very least. This should also fit in with the use of EFA's in ME with Dr bassant puri's research in London, UK.

    Source:
    Long-chain polyunsaturated fatty acids and the pathophysiology of myalgic encephalomyelitis (chronic fatigue syndrome).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860620/
     
  19. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    It is easier to write it than to say it - and I can edit and do it slwoly.;)
    WAIS-Rs would be cheap and easy to do.
    It was one of my practical classes at uni to administer, score and write up a profile. (blinded, naturally. I scored somebody I didn't test.)
     
  20. Hip

    Hip Senior Member

    Messages:
    3,245
    Likes:
    3,125
    An IQ-type test is what I have in mind, but it really needs to be a short one, say not more than 3 or 4 minutes in total, otherwise you will never want to do it on a daily basis.

    Some sort of multiple choice test perhaps, that was accessible via a web page, that you could just easily click your answers with the mouse, and then the test would give you your "brain fog" score, and also automatically save that score in a database so that you could look at trends later.

    It would have to be a really simple, enjoyable, streamlined process if you were going want to do it every day, or every few days.
     

See more popular forum discussions.

Share This Page