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Article: Pt. III: The Success Stories: Dr. Klimas's Heart Rate Based Exercise/Activity Management Pr

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 4, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    Nothing like this here of course Cort, but I appreciated the notion of deconditiong being addressed/can add to problems.
  3. Sasha

    Sasha Fine, thank you

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    Thanks, Cort - interesting article.

    I looked into this stuff about 18 months ago and the problem for me was establishing the threshold heart rate without any possibility of the sort of testing that these patients got. I've read Staci Stevens's stuff and it's clear that people with ME can't do the usual calculation of max training heart rate based on your age that healthy runners etc. do. Perhaps one approach would be to choose an arbitrary but low heartrate and stick to it while training and see what happens!

    I like the idea of strengthening the muscles that help keep the blood where it should be in OI. It makes sense that that would help us.
  4. Cort

    Cort Phoenix Rising Founder

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    Thanks Enid. Yes the big 'd' is inevitable if you're really whacked out by this disorder - there's just no two ways about it. I'm definitely not deconditioned but I think I could really use the core exercises that stop blood from pooling in the abdomen.
  5. Cort

    Cort Phoenix Rising Founder

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    Thanks Sasha. I believe the third video will demonstrate a way for people who cannot afford the VO2 max testing (at Nancy's clinic I think its about $500 - alot lower than others, if I heard right) to get some idea of their heart rate at AT. In the meantime I like the idea of monitoring activity levels using early morning heart rate.
  6. GaryK

    GaryK

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    Yes I was wondering the same thing Sasha..... on an average lower Heart rate at base line rest might be something worth checking into.

    Cort thanks for the nice write up. I've always admired Dan. Great to see he's doing better.:D

    GaryK
  7. dancer

    dancer Senior Member

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    Just a question...were the patients who reported this great improvement receiving other treatments as well the regulating-heart-rate-activity program? Doesn't Dr. Klimas also utilize immune-modulators, meds for POTS issues, or other things?
  8. Cort

    Cort Phoenix Rising Founder

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    Yes, she does - she employs a large array of treatments and I imagine everybody will be a bit different. Pat got some of her immune problems knocked down by Immunovir and she used meditative techniques from the Amygdala Retraining for keep her system calm.

    Dan's neurologist give him a drug for the myoclonic jerks but it wiped him out too much. I think his other main treatment was NUUN - the electrolyte enhancer - which he feels has done him quite a bit of good.
  9. pamb

    pamb Senior Member

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    Thanks Cort,

    This series has been super. I'll be printing your three articles out for John's doc, in the hopes he will then watch the videos. John just got into a pain clinic and they are big fans of exercise to manage pain.

    The amazing thing is the doc John got has a few other ME patients and he actually 'gets' it. He is totally onside to prescribe an exercise program to help John, and ex-competitive athlete, learn how to NOT do to much. Your timing is perfect for us. A true gift from heaven :thumbsup:

    I'll let you know how it goes, but expect it will be a few months before it gets going as the doc wants to work on John's meds first. His doc in France just had him on narcotic painkillers and benzodiazapines, for mercy and to keep him quiet 'till he died. So far the new pain doc is just amazing.
  10. Cort

    Cort Phoenix Rising Founder

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    Glad to hear it.

    Exercise certainly is a paradox in ME. Recent studies have shown that 'real exercise' increases pain sensitivity in ME instead of decreasing it (as occurs in healthy people) but this very careful program has done the opposite for these two people.

    I feel for John - an ex-athlete - having a disorder like this. (I've been there.). Good luck with everything.

    One more video to go :cool:
  11. Ernie

    Ernie *****

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    Watch out for a cytokine storm.
  12. gregf

    gregf Senior Member

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    Interesting. This fits with my own experience. I think exercise and ME is actually a complicated topic, that the science has a long long way to go, and then only after the etiology of ME is understood. We need to prove the retrovirus, then understand all the heart-blood issues, then take into account the reduced blood flow to the brain, BEFORE anyone can claim to have a scientific and moral position on ME and exercise. I choose the word "moral" deliberately. For anyone pushing us to exercise without the deeper understanding of all the things mentioned, is actually medically negligent.

    Yet there is a suggestion in my experience, that a little exercise does help. It helps reduce pain, it helps maintain the existing energy level, and it helps head off the little bit of clinical (disease induced) depression that we can get.

    I was told to do aerobic exercise. Yet I found doing aerobic exercise (treadmill and static bike), was disastrous. I got deep headache, anxiety and noise intolerance for the first time. For me these were frightening new symptoms I was left to deal with on my own.

    When I did isometric exercise (weight based machines), I could maintain and even improve my health. After 5 years of weekly 30 minutes of slow isometric exercise at the gym, I still do they same exercise volume, yet I am in substantially less pain and able to enjoy life a little.

    I think it is important that when we take the Wesseyites to court, we must not say exercise is wrong, but that their rationale and unscientific implementation of GET was wrong. Actually, plain bloody evil.
  13. sickness

    sickness

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    While reading this article, I thought 'I wonder what my heart rate is?'. So I took it while I was sitting here, quietly, at the computer. It was 124. I can't imagine what my 'safe' heart rate would be! I've had POTS issues for ages, but I think this is the highest my 'resting' heart rate has been.

    Great article, very interesting stuff.

    take care, ness
  14. valentinelynx

    valentinelynx Senior Member

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    ( :oops: NB: If anyone actually read this before 12/8/11, please note that I had messed up in reporting the heart rate I was using to indicate sufficient rest (said it was 120, when it is actually 100. This would make a huge difference if you were trying to do what I've been doing! 120 is the rate I use, rather arbitrarily, as a indicator that I am exercising aerobically, so I can monitor the time spent doing so.)

    I, too, am a former athlete, and so far, truly unable to not overdo it. Even after 18 years of ME (Giving this name a try; I just can't get comfortable with any term for this illness). I am not as devastated by the illness as many, though I've been much worse at times. I've also been much better (I used to be able to work full time). Intrigued by the heart-rate controlled exercise concept, I decided to incorporate some of the ideas when I finally got back to weight-based exercise. My goal was to avoid aerobic type exertion as much as possible, which makes me feel ill when I do too much. I failed at avoiding aerobic exertion, but I am doing much better at not hitting the "sick" zone

    A couple of principles are helping me exercise without making me sick. One is to focus on increasing the load (my exercise terminology is lacking) per rep, rather than doing more reps. I set a fairly arbitrary heart rate threshold of 100. I use this heart rate as a marker for my rest periods. I do a set of reps (I'm working out with kettlebells), for example, 10 squats, then rest until my heart rate returns to below 100 bpm. Regarding the load vs rep dichotomy, for example, this week I discovered I could do 12 box squats using a 10" stool with a 20# kettlebell! Oh boy! Then, I realized, oops, what I should do instead, is find a lower stool or use a heavier weight, not do more reps.

    Resting until my heart rate drops to a certain level is key, I think, to avoiding immediate relapse. Two years ago, I starting using a video workout and followed along faithfully, taking only the 2 minute breaks between sets indicated on the video. This was clearly not enough, and I would end up shaky, with my head feeling plugged up and generally fluish, clear signs of overdoing it. I was able to push through for a couple of months like this, but inevitably it was a bad idea and I ended up not exercising again for 2 years. Just started again this past summer and with the new methods, am still at it.

    Why 100 bpm? I wanted a heart rate that I knew I could rest and achieve in the middle of a workout. Given that merely standing up would make my heart rate jump to 90+ (from the 70s sitting), I couldn't set it much lower. With 100, I end up resting during a session the same amount of time that I work, or often more than I work. Over a couple of months, I've found that my heart rate drops faster from its highs when I stop exercising and that I can achieve a higher heart rate. Both of these are supposed to be good signs. I also have developed some very nice muscle tone. If only I would lose the overlying fat, I might look pretty good!

    The problem with all this is: this is all I can do. When I'm doing this exercise 2 days out of 3 or more, I have nothing left to do anything else. I alternate hard days with easy days: 25-30 min on a hard day (half of the time is rest) and 15 min on an easy day (still 1/2 rest). Because I am building muscle and strength, I am OK with that, as I feel like I'm doing something of value. I believe that I am building strength that will be useful if, say, I get to go back to work, for example. I suspect that if I dropped the ego need to really work it, I would still improve my general fitness and not destroy my ability to function the rest of the time. On the other hand, the workouts are a boon to my self-esteem. I am grateful to Dr. Klimas et al for the heart rate control concept, although I'm not really being a good example; it is still helping.

    Thanks for letting me share.

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