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Questionnaire For Keeping Track Of M.E. Symptoms And Progress

Discussion in 'General ME/CFS Discussion' started by golden, Jul 27, 2013.

  1. golden

    golden Senior Member

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    Has anyone come up with a decent system of keeping track of progress when trialling treatments?

    I know most of the professional ones are seriously flawed.

    For me , its the neurological challenges plus an actual fluctuating illness that leaves me perplexed.

    I recall Hip raising this issue some time ago. Its an important point.

    But a symptom diary is no good to me. I am going to give it a shot though ...

    In a single day , important things to take into account :

    * Time waking up / time going to sleep
    * basal temperature am/pm
    *blood pressure sitting standing
    *room temperature
    *hormonal cycle
    *full moon cycle
    *weather changes
    *diet
    *fluid
    *any stress factors
    *what can be physically achieved
    *what can mentally be achieved

    A score of 1-10 maybe....

    I thought I made a leap in improvement.

    Then I woke up to 'insanity ' a couple of mornings ago. Its an exercise advertisement programme... crikey ...
    I know I definately cant do that!

    But what exercise could i do to proove to myself I am definately improving? I wondered....

    I have done a fair amount of chores...but this isnt really conclusive.

    Any organisational thoughts anybody┬┐
  2. golden

    golden Senior Member

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    For example :

    Mental improvement was ...

    When the remote control of the TV dies...

    I take the batteries out and give them a shake...put them back in and voila!

    However In my recent improvement - It occurred to me to simply shake the remote control... voila ! :)

    Obviously I cant use this test again as I have worked it out.

    I want to know how much my cognitive abilities are improving. I know I still have neurological neurological symptoms.
    Tinnitus , some head blockage - need to not jump about ....
    But I can cycle well.
  3. lnester7

    lnester7 Seven

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    To be honest I have in my things to do to write myself an cel App just with CFS tracker, I need to spec it (things that needs to do and how) It is my next project!!! If anybody has suggestions of what they would like on it, I will start it. Not planning to charge for it (unless I need to pay somebody to help me, then I would spread cost).
    golden likes this.
  4. golden

    golden Senior Member

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    i dont understand that technical stuff but i would be prepared to pay for it.


    This is something i have never been very good at. At worst all i could say was 'i am tired' - Whilst I forfilled all the M.E. criteria - after
    Now I have had a symptom picture change , I am at a loss.

    I think being able to translate info into a graph also would be cool :)
    lnester7 likes this.
  5. AbbyDear

    AbbyDear

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    I would add pain level - min, max, avg (or maybe just max), generally 0-10, 10 being worse.

    not sure how to measure brain function, memory, coordination, concentration.
    not sure how to measure physical activity, i have to cook for myself, otherwise..., but just brushing teeth seems to be a real feat at times. For those who can walk, or do exercise (reps), maybe they can record distance, reps/sets/weight.

    maybe:
    1. number of times waken at night, how long took to fall asleep, approx total sleep time (may be challenging to know this), or could score sleep on scale 0-10.
    2. fatigue level, or energy level
    3. sleepiness level (i considered tired to be different than energy/fatigue/weakness)
    4. mood
    5. pulse rate sitting/standing, am/pm, before meal, after meal
    6. body weight
    7. SpO2 if have device
    8. current Karnofsky score (though this not likely to change from day-to-day, also note here higher numbers are more functional unless scale is changed)
    9. stress level
    lnester7 likes this.
  6. lnester7

    lnester7 Seven

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    Ok I am starting A list. I guess part of the set up can be how do you want to track Like sleep 1-10; Hours; Awakenings....
  7. SOC

    SOC Moderator and Senior Member

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    I've kept track of most of the things listed earlier in this thread at various points in my illness. I'm a very data-driven and graphical person, so I thought having hard data would help me. Most of the information I recorded didn't help much, though. :( The ones that I've stayed with because they seem to tell me the most about where I am and what I can do are BP on awakening and HR throughout the day. Interestingly, these are the ones that Dr Rey and Connie (Dr Sol) advised me to record, so I guess they know their stuff where I'm concerned. :) I also include a very rough description of my activity for the day, so that if I do crash I can check back and see if there's a correlation to activity level.

    I've never had a good measure of cognitive function. My subjective assessments are often way off the mark, so that was useless. Also, cognitive function covers a lot of area and not all my cognitive functions were impaired, although some -- focus and memory -- were severely impaired at one point.

    Another thing to keep in mind when using these measures to evaluate treatments is that very few treatments show a strong improvement in a short time. For example, antibiotics and antivirals can take months to show noticeable improvement. It's going to take a long time to trial all the treatments one at a time for several months each.
    lnester7 and AbbyDear like this.
  8. lnester7

    lnester7 Seven

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    The best sign I particularly for me to measure my physical state are stairs and how easy is to go up.
    For BF my best measurement is how fast I think.
    My neuro symptoms are easy for me to measure because I get pretty bad at depth perception and dropping things. The more I drop the worst I get.
  9. golden

    golden Senior Member

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    I would find recording external influences important and easy.
    hormonal cycle, lunar cycle, temperature, weather, date ,
    chemical exposure, lights

    internal data:
    body temp, weight, bp ,

    diet
    fluid

    current protocol Eg. i do perrin technique each day...etc.

    Here lies a problem because most of us are on multiple protocols...

    second problem : when assessing eg.a supplement

    a) it needs time
    b) distinguishing side effects from a detox
    c) distinguishing side effects from a natural worsening of M.E. that would have come anyway

    Also a build up of drug/treatment /supplement may occur and cause delayed side effects

    plus the complication of the delayed 24-48 hour PEM on top of which in the meantime other things will be being done - how on earth can you pinpoint for sure the isolating factor 48 hours ealier as a cause of PEM.

    plus actually discovering that a balance of four or five things together works synergetically ...

    its complicated.

    Exercise - maybe better able to tolerate lying down or on a bicycle rather than being upright and bobbing the head about?


    So would i cycle a distance x each day ? or every other day or whatever... see if i get fitter and can do it faster?

    gague how easy it is to read a book? see if i have retained any info?
    lnester7 likes this.
  10. Allyson

    Allyson *****

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    Great idea to start this thread

    not read all and racing out but I would include temperature - outside plus if you are inside heating or aircon used?

    also compression clothing - if tht I swor it can make a difference in fluid levels

    electrolyte intake - ditto

    Cheers,

    ALly
    lnester7 likes this.

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