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PEM/delayed fatigue - cardinal symptom?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Sasha, Oct 28, 2010.

  1. leela

    leela Slow But Hopeful

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    Hey CLoud,

    I was researching them recently and found a couple on amazon for under $50. I think they work best if you buy some sort of
    conductive goo for the strappy bit, from what I've read. Here are two that got decent user reviews:
    I presume this is "women's because of strap size:
    http://www.amazon.com/Acumen-Basix-...UTF8&coliid=I1HMVJ0N6QCREX&colid=TJCP5HBIVO1Y
    Unisex:
    http://www.amazon.com/Timex-T5G971-...UTF8&coliid=I3E0JY4SX2WT9X&colid=TJCP5HBIVO1Y
    conductive goo:
    http://www.amazon.com/Spectra-Elect...UTF8&coliid=I10277JSTRJA7P&colid=TJCP5HBIVO1Y
  2. Cloud

    Cloud Guest

    Awesome.....thanks Leela
  3. helen41

    helen41 Senior Member

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    Cloud and Leela, a word of caution. I did some looking into HR monitors, and I think the watches you showed don't keep track continuously- you have to hold your finger on a sensor for a few seconds to get it to give a readout.
    I couldn't find a strapless one that had anywhere close to a decent battery life, so I eventually settled on the Polar F4 for $89.00 The strap actually was pretty comfortable. What I didn't like was how quiet the alarm was. My hearing is fine, but it was almost inaudible.

    I contacted Polar, asking if there was a way to increase the alarm volume. They offered to replace it with the RS100, which they thought would fit my requirements better. It hasn't arrived yet
  4. leela

    leela Slow But Hopeful

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    Thanks, Helen, I had not considered that. One of the reviews mentioned an alarm--
    I would imagine that would imply continous monitoring? Or not?
    Glad you mentioned it though, 'cuz it was a detail I had not thought to look for.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  6. urbantravels

    urbantravels disjecta membra

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    ETA: I just replied to a post while missing a whole page of previous replies!

    There isn't any difference between "men's" and "women's" heart rate monitors - except the styling of the watch part. The chest strap is standard. I've owned three heart rate monitors and they are pretty basic equipment. Don't buy one that claims to work without a chest strap, they are not accurate. Every monitor I've had has an audible alarm that goes off if you go above or drop below a range that you set. Polar and Cardiosport are the two best brands that I know of, with Polar being the market leader.

    I think there is some confusion above about how we set our heart rate limit. There is the standard 220-minus-your-age "anaerobic threshold" as it exists for normal healthy people and then there is the threshold for us, which is typically MUCH lower, on account of our illness and everything.

    For me as a normal healthy person (sob) at age 40, the rule of thumb is that my maximum heart rate would be 180, and that I would cross my anaerobic threshold at about 80-90% of that number. I would be in the "aerobic" zone between about 108 (60% of max heart rate) and 162 (90% of maximum heart rate.) So if I were exercising, I'd aim to keep my heart rate somewhere between those two numbers.

    Of course these are just average numbers and for any given individual the max heart rate may be lesser or greater. Athletes can do testing to determine what their VO2 max really is, not just use a standardized number for someone of their age.

    For us, it appears that we enter anaerobic metabolism at a much, much lower heart rate than normal healthy people. How low? We don't really know without actual testing (ie Pacific Fatigue Lab), but we can guess at a number. I have my heart rate monitor set to go off when my heart rate goes above 110, which is fairly arbitrary but seems reasonable so far.
  7. leela

    leela Slow But Hopeful

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    Great info, UrbanT! Thanks for chiming in :)

    ggingues, I would avoid the one you have to place your fingers on to get a reading, for the reason that it thus won't alert you
    to having passed your AT unless you check, and for its lack of chest strap (which I guess is kind of the same reason.)
  8. Cloud

    Cloud Guest

    Thanks everyone for the input. Urban....I agree that 110 is more like it. I was a cross country runner my entire life pre-ME/CFS, and a threshold of 220 minus age would have been really high even in that condition at any age....so I knew 168 was way off for current conditions. I wish I could remember where I got the formula that gave the 98 as my current threshold because it seems more valid. Of course it's not just reaching the threshold that can be a problem...it's really more about how long I keep it there.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I had the disability testing done and my AT is about 130 BPM, I thought a reduction of that by 10% was a good value. I contacted the person I had it done with in Ithaca and she suggested that I start at 110! I am 40 and Moderately affected, I still have a full time job, but do not work full time hours. I only work 30hrs a week at most!

    GG
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Are you refering to 1 of the links I posted?
  11. leela

    leela Slow But Hopeful

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    Yes, I was--sorry I'm *extra* airheaded lately due to having moved this weekend. It's like I left a box of essential brain cells back at the old house.
    One of the links you posted for heart monitors (I forgot which one now) says you have to put your fingers on two contacts to get a reading.
    That's what the non sequitur in my post was about. :Retro redface:
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not a problem, thanks for the feedback, will have to research this more!

    GG
  13. free at last

    free at last Senior Member

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    Fatigue was never just it, no where near enough to be close as a term to hilight the effects of excercise, more ILL AND FLUEY. More poisend goose pimples, on the arms ( just like a fever or flu. night sweating, nausea, weakness, jelly legs.

    fatigue is a joke, if it was just that, not a problem. Cant nearly lose your mind with just fatigue lol. or a lot of athletes would have panic attacks and all have ME nope that aint it at all.

    As ive recovered its more like that now ( when not in relapse ) Fatigue is not even close to describing what Bad ME can be like. I use to read about fatigue, and think, they aint got what i got. hard not too. because it just aint it. sick of that word. should have called it chronic feel like dieing syndrome that i would have related too. needs a name change me thinks
  14. Wonko

    Wonko Senior Member

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    poisoned goose pimples - check - lol

    good description for them
  15. SOC

    SOC Back to work (easy, part-time work)

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    Sorry, Cloud! I've been out of contact for a few days -- lots going on.

    I had some Polar heart rate monitor. It was the brand Dr Black recommended. She used one, I believe.

    I wasn't really able in increase my activity using the monitor. After a year or so of very careful management, I noticed some small improvement, such as being able to walk up a flight of stairs very slowly without alarming (as opposed to alarming half way up). I attributed the small improvement to the extra rest -- LOTS of extra rest -- I was getting.

    I don't think PWCs can use any formula for AT. It's symptomatic that our AT is low. When I started using the HR monitor, I think my formula-based AT was about 170. My measured AT was 126. About 6 months before, when I was trying to exercise because I thought I was out of shape, the "personal assistant" at the gym was trying to get me to exercise at 160 bpm. She was kinda disgusted with me that I couldn't achieve 160 bpm without nearly collapsing with exhaustion. :headache:

    I didn't notice that my heart rate increased all that much with ordinary stress, so I couldn't say if it helped me much in that regard. I'm not all that easy to stress out, though. ;)

    All the kids LOVED telling me to cool it. *grin* I think they got a real kick out of bossing a grown-up around for once. :D
  16. SOC

    SOC Back to work (easy, part-time work)

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    I was about the same place when I was first tested 4-5 years ago. I'm thinking that even though I tested at 126, I would have been better if I'd quit at about 110. That might have kept me inside my energy envelope as well as under my AT. I used the daily total kcal calculator and an activity diary to help me figure out when I had done too much even when I'd stayed below my AT. I think I spent a lot of time just under my AT, which I suspect resulted in too much energy consumption even without exceeding my AT. Setting the alarm between 110 and 115 would probably have been better.

    I couldn't work semi-fulltime and stay within my energy envelope and under my AT, though. :( I hope you have better fortune.
  17. Cloud

    Cloud Guest

    Hi Sickofcfs....no worries about responses, I haven't been on line either. I probably miss a lot of responses to my posts. I try not to.

    I agree that pacing only serves to limit crashes and disease progression....but it does nothing for increasing ability. If it did, GET would work, which it absolutely does not....I know, I've tried it many times.

    Since physical exhertion is the #1 offender when it comes to PEM, learning those boundaries is very important. But for me, physical exertion is not the only way to cause a crash, which is the same as PEM. The one that I never hear talked about that is actually quite bad for me is stretching.....If I do too much stretching, I will crash...even without raising my heart rate. And the crash can be just as bad as those following too much physical exertion. Sure would like to know what that's about and why I don't hear more about that in our community.
  18. leela

    leela Slow But Hopeful

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    I would like to know about this too. It is a great sadness to me to have lost my yoga practice. And then there's the weird dilemma of how much of the painful awfulness in the joints and muscles is due to deconditioning (after years of devoted yoga) and Aging While Sedentary. There must be a biochemical reason (like lactic acid, or toxins/pathogens stored in connective tissue or something) for why we can even crash from too much stretching.

    I won't even say what my body is like right now after moving house....:In bed:
  19. Wonko

    Wonko Senior Member

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    stretching can be very bad for me also - given the huge number of posts I've seen were people recommend stretching as a starting point (eg for the bedbound) I assumed it was just me being wierd
  20. leela

    leela Slow But Hopeful

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    Wonko, I think you have just stumbled on another item that should be added to the list of cardinal symptoms:

    Assuming It's Just Me Being Weird

    How many of us have had our secret strange personal weirdinesses confirmed and identified here on PR!
    There are *so* many unexplained and misunderstood systemic oddities in ME/CFS. Imagine how many
    people-hours have been wasted thinking we are just freaky eccentric weirdos! :eek:

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