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Does this look like PEM to you?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by happy, Sep 15, 2017.

  1. happy

    happy

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    I apologize for long post... if you decide it's too long to read I will understand! :nerd:

    I am mildly affected: on average I walk 4500 steps per day and am able to do computer work 6 hrs per day as long as I don't do much else in life. No cooking, minimal dish washing, no other cleaning.

    In August I started meticulously tracking everything I did in a day and how I felt - OK, tired, very tired etc. From this I calculated an activity score (how much I did in a day) and fatigue score (high score = high fatigue) for each day.

    What I got was this graph:
    blue = activity score (the higher, the more active I was)
    red = fatigue score (the higher, the more tired I was)
    ActivityVsFatigue (2).png

    As you can see, sometimes I do a lot (for me) and don't feel as much fatigue and sometimes I rest all day and am very fatigued. Well, usually I rest all day because of the fatigue ;)
    Also I had 9 very good days with relatively little fatigue in the middle of the graph. In that time I was taking a recovery mix for bodybuilders and will definitely be trying it again!

    But what happens if I move fatigue two days to the left? That is, what if I compare how active I was to how much fatigue I felt 2 days later?
    blue = activity score (the higher, the more active I was)
    yellow = fatigue score two days later (the higher, the more tired I was two days later)
    ActivityVsFatigue+2D.png

    To me it looks like in this graph the yellow line moves more in sync with blue (fatigue moves with activity) than the red line did in in the previous graph. When blue line goes up, yellow line tends to go up as well and vice versa. At least much more often than the red line.

    My fatigue feels so random to me, I never know if I'm going to feel OK or terrible the next day. But in the above graph I think I see a PEM delayed by 2 days. Well, mostly. Sometimes I am tired, but still have things that need to get done so on those days activity and same-day-fatigue (red line) would both be high and the peak in yellow line would precede the peak in blue line by 2 days.

    What do you think? Does it look like my fatigue is delayed by 2 days or not? If you think there's no correlation, please tell me so :p

    Edited to add:
    The reason for logging activity and fatigue was mainly because how I feel fluctuates so much that it's hard to know whether a new supplement is doing anything (unless it would have a major effect). Also, I wanted to be able to compare how I feel now to how I felt six months ago and I didn't really get a good feeling for it by reading my symptom diary. I guess I'm more of a numbers person. It was not to asses PEM, I just thought once I had the data, let's see whether my fatigue is less random than I thought.
     
    Last edited: Sep 15, 2017
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  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Bristol
    This seems like something everyone should do! Perhaps you should suggest it as a ME/CFS Mendus study? http://www.mendus.org/

    Despite measuring various things on graphs I've never thought to do this most straightforward one and then move the line until it fits well = how long your PEM is delayed. But I get a sense it will be 24hrs for me.

    Are you measuring activity by steps?

    I think it does look like reasonable fit for 48hr PEM yes, it will never be perfect (how well you sleep, sensory and cognitive demands could be other factors).
     
    happy likes this.
  3. A.B.

    A.B. Senior Member

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    You can't assess PEM if you don't provoke it. Assessing PEM might require a test in individuals that have learned to live within their energy envelope.

    This test would involve reducing activities and doing less than usual for a several days. If there is some improvement this is consistent with PEM (but if there is no improvement it might just mean that you were already within your energy envelope).

    Then the individual would intentionally challenge themselves with aerobic activities on two days in a row, aiming for the same intensity on both (the more controlled the better, but walking the same distance in a similar timeframe is probably good enough). If it's harder to do this on the second day then this is consistent with PEM. If there is a marked worsening on day 2, 3 and maybe 4 then this is highly consistent with PEM.

    It's possible that a positive result is due to chance fluctuations in symptoms and/or biased observation of symptoms. Ideally, try to base conclusions on observed behaviour and performance rather than just feeling.
     
    Last edited: Sep 15, 2017
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  4. happy

    happy

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    Mendus site looks interesting! Will take time to check it out. Thanks for suggestion :thumbsup:

    Activity score = my activity estimate + daily steps (measured by Fitbit)

    My activity estimate is a bit complicated.
    I have 20 activity types, like Sleeping, Working on computer (sitting), Walking outside. Each activity type has a score from 0 to 7 which is a number that represents how tiring this activity is for me. Every time I switch an activity I record time, how I felt at old activity and new activity type. Then the time spent doing activity is multiplied by the score (0 to 7). So the more time I spend doing something and the higher score it has, the greater the activity estimate.
     
  5. Wonko

    Wonko Senior Member

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    The other side.
    I thought it had been shown that a TENS machine could now be used as a stressor to provoke PEM? To save on all the heavy breathing and sweating, PEM with none of the effort ;)

    (Nothing says I can't be both sick and lazy - or, if you're going to feel like &^%$ why wear yourself out first)

    I actually quite like the approach as a rough and ready, erm...thing, yes it's not rigorous, yes it probably involves too much logging for me to be able to do it, but I sort of like it.

    edit - Not sure I like the activity being directly tied to effort, as that's definitely not the case for me. At times using a computer to surf has no impact, at others I can't do it for more than a few seconds a few times a day - the effort for this activity does not feel constant to me.
     
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  6. happy

    happy

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    I'm not sure what you're trying to say here...

    I'm not proposing to anyone to do what I did with the logging and graphs. I'm just wondering if other people also see a delayed fatigue effect (we don't have to call it PEM). Because you know maybe I've been just looking at it too long and I'm imagining things that aren't there :p

    From what you wrote I imagine you think that the data shown above doesn't show much correlation between activity score (blue) and fatigue 2 days later (yellow). Am I correct?
     
  7. happy

    happy

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    We are all different and this thing is set up in a way to capture my experience. For me using a computer feels different from hour to hour of course, but that is captured in another variable - the level of fatigue while doing the activity. For the first two hours I might feel OK and then tired the rest of the time. Some days I do very little (activity score is low) and yet fatigue is high.

    Do you think the blue-yellow graph suggests fatigue follows activity after 2 days?
     
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  8. Wonko

    Wonko Senior Member

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    The other side.
    I'm sorry, my brain can't make any sense out of the graphs. I understand the approach, logging, plotting, and time shifting - but the graphs - nada.

    Explaining them won't help ATM - I just don't have that much function, right now :(
     
    Last edited: Sep 15, 2017
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  9. A.B.

    A.B. Senior Member

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    There seems to be some correlation at some parts but the signal is weak. In my view PEM is noticable event, if you have to finely comb through the data then it's not there or there is something wrong with the methods used. I am suggesting that the problem might be a lack of sufficient exertion. If there is insufficient exertion then you'll mostly see noise in your data, with a little correlation.
     
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  10. happy

    happy

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    Thanks for your opinion. Yes, when I push too much I usually see effects the very next day.
     
  11. happy

    happy

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    Ouch... yes I've been there too. Hang on :hug:
     
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  12. NelliePledge

    NelliePledge plodder

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    PEM for me isnt simply fatigue, it is feeling like Ive got flu, aching all over, having no energy etc
     
    Last edited: Sep 15, 2017
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  13. Wonko

    Wonko Senior Member

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    The other side.
    Tho there is fatigue involved I'd agree it's not the dominant problem most of the time.
     
  14. NelliePledge

    NelliePledge plodder

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    yes W Ive slightly edited to reflect that fatigue is a part of PEM
     
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  15. Cort

    Cort Phoenix Rising Founder

    It just underscores how severe this disease is since you describe being able to work on the computer 6 hours day so long as you don't do anything else as mildly effected.

    My mother had a autoimmune disease which required that she be on high doses of prednisone and she could do a lot more than you.

     
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  16. happy

    happy

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    I do get the flu aches with extreme fatigue (without signs of respiratory infection), but only when I seriously overdo it, which is maybe twice a year. But if I get that far it takes me months to get back, so I don't know if it would be called PEM. The flu aches are the first to go away, fatigue stays for a long time.

    Here I was trying to understand why my energy levels go up and down so much all the time.
    I'm not sure what is the difference between extreme fatigue and "having no energy" that you mentioned?
     
  17. happy

    happy

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    Yes, it's scary how severe it can get :( As you know there are many PWME that are much much worse off than I am.
     
  18. Dechi

    Dechi Senior Member

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    I don't understand why you move the red graph to the left. Shouldn't it be to the right, since PEM happens 2 days after ?

    Also, I was wondering what you use to log your fatigue and activity ? Do you manually input a score based on perception or do you use data from apps, and if so which ones ? I personnally find it very hard to objectively input reliable manual scores. Even with the best intent, it is virtually impossible to disregard data and be 100% impartial.
     
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  19. happy

    happy

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    Let's say that this is my schedule of the week (I work 6 hours per day, but don't do much else):

    Monday: a friend comes to visit me on top of my 6-hour job (so a very active day for me). That day I feel moderately tired, but not much at all compared to how active I was. - high activity, moderate fatigue

    Tuesday: I work and rest. I feel about the same as on Monday. - normal activity, moderate fatigue

    Wednesday: I work and rest, but I feel terrible, I am tired when I get to work, can't concentrate, can't wait to go home. - normal activity, high fatigue

    To compare Wednesday's fatigue to Monday's activity I have to move the red graph (fatigue) to the left, so that Wednesday's fatigue level is displayed on Monday instead.

    Activity log is complicated and consists of the type of activity I was doing and how long. Every time I switch an activity for at least 5 minutes I log it. I log it in Google sheet on my phone. That way it's easy to make a log right away so I don't have to rely on (inaccurate) memory. Also, since it's Google sheets I can switch between using phone and computer to edit/view data and it's always synchronized.

    The log also consists of number of daily steps from Fitbit (half the weight of final score comes from steps). I think the activity log is quite objective. I can't imagine logging that I was sitting when I was actually walking around.

    I log fatigue level alongside activity (so every time I log activity I also log fatigue level for that activity). This one is subjective, of course. There is no way around that :)
     
    Last edited: Sep 17, 2017
  20. Dechi

    Dechi Senior Member

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    Yes, of course, I didn't see it this way for your PEM log ! Thank you for explaining. It makes sense, and yes, it looks more correlated when you move it two days.
     
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