Hip
Senior Member
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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?
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?