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Objective measures of our health and symptoms we can do at home.

Discussion in 'Lifestyle Management' started by Trish, Jul 22, 2018.

  1. Trish

    Trish Moderator Staff Member

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    There have been several posts on other threads where pwME have mentioned particular ways they use to measure their state of health. Some of these may be useful in enabling us to gauge whether we are well enough to do stuff or need to rest more, and to predict crashes and adjust our activity levels accordingly.

    Those I've come across include:
    heart rate monitoring - both resting heart rate and anerobic threshold.
    heart rate variability
    steps
    blood pressure.

    Other thinks we might try to measure include:
    sleep - duration and quality.
    cognitive function
    biochemical - urine, sweat, saliva, blood eg cortisol, sugar levels.

    Please do share what monitoring you do or would like to do, what equipment is needed, what it tells you, whether you find it useful, and in what way.

    My aim is partly to encourage and enable those of us interested in doing so to monitor our health and symptoms in ways that enable better understanding of what affects us, and possibly to contribute useful information to our communication with our doctors, and to research.

    Note - this thead is in the public area of the forum, so only share stuff you're happy to have made public anywhere on the internet.
     
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think cognitive testing should be used in trials, especially as this came out as the "worst/most limiting factor" in the S4ME survey.
    Not sure how this could be readily "measured" in a clinic, but it should at least be mentioned.
    Others will know more/have suggestions.

    One thing they use in the PIP assessment is counting back from 100, in 3s or 7s.
    They did not ask my friend this, but concluded that she was able to make complex budgeting decisions on the basis of what is the change from £1, when you spend 75p. She asked if she could write it down (allowed), initially got it wrong, but then corrected herself!
     
    Last edited: Jul 22, 2018
  3. Hutan

    Hutan Moderator Staff Member

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    Here's the link to the Psychomotor Vigilance Test that I have used in the past. I think it's basically tracking response time. It's a two minute test where you click your mouse or track pad when you see red numbers in a square.

    http://www.sleepdisordersflorida.com/pvt1.html#responseOut

    (Gosh, my results on it now are a lot worse than three years ago. I hope it is just that my track pad isn't as quick as a mouse click. :nailbiting: ).

    I'd be interested to hear if others find that results on this test correlate with other test results and subjective measures. I found that they did.
     
    Last edited: Jul 23, 2018
  4. Mij

    Mij Senior Member (Voting Rights)

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    I forgot to press 'start' so waited for 3 minutes lol
     
  5. Trish

    Trish Moderator Staff Member

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    I've just tried the response time test. Thanks for sharing it, @Hutan.
    I tried it 3 times in fairly quick succession. Your response time in milliseconds is averaged over about 25 responses in 2 minutes.
    Attempt 1 using laptop and mouse clicks - average =355, suboptimal, seek medical evaluation.
    Attempt 2 using mini tablet with touchscreen - registered around 700 to 1200 for the first few responses so I gave up. The screen was too slow responding to my touch. Also possibly having my finger moving in the area I'm watching could be a distraction - on the small screen my finger partly covered the are where the stimulus appeared in order for it to be close enough to hit the screen fast, meaning my eyes/brain had more to cope with.
    Attempt 3 using laptop with mouse clicks - average = 284, excellent vigilance and alertness.

    My conclusion - do it several times and use a mouse not a touchscreen.

    My diagnosis - I'm suboptimal, then half dead, then have excellent alertness. Take your pick!
     
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Mine came up suboptimal on my phone, but again, I don't think the phone was reacting quickly enough. That said, having a mouse cursor hovering over the numbers (so you can be poised to click) seems likely to give too positive a reading too. I wonder which it's intended for?
     
  7. Trish

    Trish Moderator Staff Member

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    Since it says 'click' that suggests to me that it's designed for a mouse, not a touch screen.
     
  8. Hutan

    Hutan Moderator Staff Member

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    I think if you don't feel that your technology is interfering in a major way, then it's probably fine to just take the numbers as relative measures that you compare from day to day (and not worry too much about the 'sub-optimal' rating).

    From memory, the sub-optimal rating shows up if you do worse than 344.
     
  9. Trish

    Trish Moderator Staff Member

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    I agree, @Hutan, it's about self monitoring over time, not competing with someone else's idea of optimal. But from my experience, it is pretty variable even on the same day, so if I decide to use it for monitoring myself, I'd probably do it twice and record both.
     
  10. Inara

    Inara Senior Member (Voting Rights)

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    I fear the reaction time to register your click is a bit too long - so the same experience as with @Trish. My average time was 806 msec when using a tablet. (I really had the impression I was faster.)

    So using it as a relative measure seems sensible to me.

    It's fun though :)
     
  11. Ravn

    Ravn Senior Member (Voting Rights)

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    I use the following:

    Heart rate monitor:
    • for resting HR: The standard recommendation is to take RHR first thing in the morning but that doesn't work for me; my HR upon waking is extremely erratic and random and probably most linked to how recently I turned over in bed. So I take RHR mid-morning and this tracks my current state of health relatively well but it has no predictive value.
    • for peak HR: I have POTS that worsens with PEM. If I cannot keep my HR below 125 during my morning routine I know I'm heading for either PEM or a coldsore reactivation (always comes with significant flu-like symptoms these days).
    • for pacing: trying to stay below my anaerobic threshold is difficult with POTS but even just aiming to stay below it results in fewer episodes of physical exertion induced PEM. I used to use an audible threshold alarm, and sometimes still do now, to learn about the HR impact of a new kind of activity but mostly I keep the alarm off now because with POTS it gets triggered so often it becomes maddening. I'm pretty good now at remembering to glance at the monitor regularly.
    • for HRV: my heart rate monitor does a kind of heart rate variability based “fitness” test. This tracks my current state of health very well. An unexpectedly low reading is also a warning sign I'm about to hit PEM or a viral flare. Sadly this indicator comes too late to stop the damage but at least it gives me a few hours notice to cancel any plans.
    My HR monitor also measures steps and sleep duration and quality but the data is meaningless in my case. The step count seems erratic and doesn't relate well to my actual level of activity nor to whether PEM results or not. The sleep measurements are plain nonsense. I don't know if that's because I always end up sleeping with my HR monitor bearing wrist jammed under my body resulting in faulty readings or whether my sleep quality is so abnormal that a monitor calibrated for healthy people doesn't work.

    In summary, the HR monitor data correlates well with symptom severity. Changes in HR are also the earliest sign I have found yet of PEM and viral flares, i.e. changes in HR precede other symptoms by a few hours. Unfortunately starting aggressive resting as soon as HR changes register does not stop the PEM or viral flare.

    Using HR monitoring to prevent PEM by staying below my anaerobic threshold as much as possible is only partially effective but makes enough of a difference to definitely be worth doing.

    An indirect positive effect of HR monitoring is that it objectively confirms physiological changes when I'm feeling more symptomatic. This serves as a good psychological fortification when confronted with yet another “it's all in your head” argument. I find some people who don't accept verbal explanations can be convinced by some nice heart rate graphics. Like the two below. Both taken over 25 minutes of complete rest, flat on my back doing absolutely nothing, at the same time of day. One the day before a doctor's visit, the other the day after the visit. No prizes for guessing which is which.
    HR good.JPG HR PEM.JPG

    Blood pressure monitor:

    I got one of these pre-diagnosis when dizziness was one of my major symptoms and I wanted to figure out if BP had anything to do with it (it did). These days I only check sporadically because I eat industrial quantities of salt for my POTS and want an early warning sign of increasing BP (so far all good).

    Blood glucose & ketone monitor:

    This wasn't planned monitoring, I “inherited” the monitor so thought I might as well have a play with it.

    It showed, to my surprise, that while my glucose readings are ok when I'm at my ME baseline, during PEM they swing all over the place, both too high and too low. Additionally, the worse my ME the more likely I'm in ketosis (despite not actually eating keto).

    All this is of little practical use to me and I haven't continued regular monitoring (cost of test strips, dislike of finger pricking) but I wonder if this could be a useful research angle, glucose dysregulation in PEM?

    Wish list:

    Would quite like to do some thorough cortisol and other hormone testing, variations throughout a good day versus a bad day, and repeated regularly, that sort of thing. I think that could give some useful information but it's not a realistic option for now. The same would apply for microbiome & virome tracking.
     
  12. Trish

    Trish Moderator Staff Member

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    Thanks @Ravn that's really helpful and interesting.
     
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  13. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

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    Hi @Trish,

    One more to add to the list: End Tidal CO2.

    ETCO2 is the partial pressure of carbon dioxide at the end of an exhaled breath. It can be useful to monitor hyperventilation, something prevalent & mostly unrecognised in those of us with significant OI like POTS. This is an exaggerated physiological response to being upright and often involves excessive depth of breathing rather than rate. Hyperventilation & hypocapnia can cause unpleasant immediate symptoms and knock-on vascular/metabolic effects.

    Devices for monitoring ETCO2 are capnographs (waveform) or capnometers (number). They are both available as small, battery powered devices. For similar results (+more) you could also test Arterial Blood Gases from an ear lobe blood sample, though this is getting a little bit extreme...there is one person around here that bought the kit though!

    Ryan
     
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  14. Wonko

    Wonko Senior Member (Voting Rights)

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    Results:
    Test Duration= 127 seconds

    Number of false starts= 0

    Average response time= 510 msec over 24 attempts.

    Your results show that your alertness may be suboptimal. Consider medical evaluation.
     
  15. Inara

    Inara Senior Member (Voting Rights)

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    What's the name of it?
     
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  16. Barry

    Barry Senior Member (Voting Rights)

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    Just a thought, re cognitive tests. Any test that requires you to rapidly perform a physical action, no matter how apparently trivial, may (I'm guessing!) actually be measuring a composite of both cognitive function and physical fatigue.
     
  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    One more thing you can chart is body temperature. PwME often have below normal temperatures, or run a low grade fever. This could be something you can show your doctor. I believe page 18 of the CCC Overview lists abnormal body temperatures as a sign common for pwME.
     
  18. Andy

    Andy Committee Member (& Outreach when energy allows)

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    An app that might help tracking symptoms is Bearable, https://bearable.app/

    Main reason for mentioning it, given that there numerous alternatives out there, is that it can sync "Apple Health/Google Fit data such as Steps, Heart Rate, Blood Pressure and Weight". There might be alternatives that do that but I've not investigated the options. I've no connection with this, I just happened on it today.

    Also the Solve registry could help tracking as well, https://solvecfs.org/you-me-registry/, our thread on this is here, Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E. - only available to people in the US at time of posting though.
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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