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Article: The Test: Part I of the Heart Rate Based Exercise Video Series with Dr. Klimas on ME-CFS Co

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 24, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

  2. Cort

    Cort Phoenix Rising Founder

    I want to reiterate that this is not your normal 'exercise' program. It took Dan two months before he felt it was working. At the end of 3 months he knew it was working. His neurologist - an expert in the the myoclonic jerks he was having - has an explanation why this program is working for him and I am going to get it and relay it.

    Dan still has to be very careful - I am vastly stronger than him, for instance - but these bizarre neurological episodes have diminished greatly over the past 10 months. I think that's just astonishing...

    He's also has benefit from NUUN - an electrolyte enhancer - he drinks 48 ounces a day.
  3. ahimsa

    ahimsa Rarely on PR now

    Hmm, it looks like the links require a user ID and password? I've already got way too many online identies to remember (I've abandoned more than I can count...) so I don't want to register at yet another site.

    Is there a way to see this without having to register? If not, no big deal, just wondering.

  4. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    I have an explanation as well although I suspect not the same one.

    We have an acquired mitochondrial disorder.

    Our bodies cannot meet all of our bioenergetic needs - be it from the muscles; brain; digestion; circulation, temperature regulation etc.

    Once we exceed the limits of our reduced energy production capacity we get PEM. Excercise; cognitive effort; high temperatures etc can trigger it.

    A 'co-factor' called PGC1-alpha appears to play a master role in mitochondrial biogenesis and maintenance and in reducing oxidative stress.

    Here's a easy to read primer :


    Via various signallling pathways PGC1-alpha can be upregulated by various stimuli including calorie restriction, exercise and cold exposure (anyone feel better when fasting or immersed in cool water?) - or by various compounds.

    We have a deficit somewhere in the signalling - mitochondrial biogenesis - oxidative stress loop. Vigorous exercise (or other excessive 'stress') raises signals to PGC1-alpha but the cavalry never arrives as increased mitochondrial activity; muscles fatigue and lactic acid and oxidative stress are induced. The absence of feedback (that the normal mitochondrial response has been activated) means that signals continue to be sent long after the stressor is gone and the energy deficit/oxidative stress etc causes PEM.

    Moderate exercise (within the reduced capacity of the mitochondria) has the potential to raise mitochondrial biogenesis and reduce oxidative stress via the PGC1-alpha pathway (note how gently the PACE trial participants were treated). Over time energy capacity may increase as long as always within available limits.

    On the other hand it may be possible to achieve in one week what may take 2-3 months through and exercise programme (exercise in a pill indeed) :



    Of course this is just a half baked theory that has never been tested and I certainly wouldn't advise anyone to try these compounds without proper assessment of the benefits and risks.

    Worth a trial though?
  5. svetoslav80

    svetoslav80 Senior Member

    Here - http://www.youtube.com/watch?v=OEDGjwdzaPM
  6. maddietod

    maddietod Senior Member

    East Coast, USA
    Thanks, Svet. I registered on the site and couldn't find the video!

    So I watched from your link and unregistered.
  7. Cort

    Cort Phoenix Rising Founder

    The video will be released to other sites in a month or so I believe.
  8. Cort

    Cort Phoenix Rising Founder

    Interesting stuff Marco. I had no idea about PCG1 alpha but I like the gist of the theory - signaling breakdown results in resources not being directed to the muscle mitochondria....I imagine that, one way or another, in one pathway or another - this could very well be happening. The Lights propose the SNS is not responding to signals to increase blood flow to the muscles -a similar take in a different area...They also believe gthe system is chronically turned on.

    Newton has stated that using the right kind of activity can help the situation. That is Staci Stevens belief as well. The question is - in which patients and how much?
  9. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    ME/CFS as a mitochondrial disorder is nothing new. Cheney; Bell; Myhill etc, I believe, all think this is where the problem lies although in terms of therapies, I may be wrong, they tend to suggest supplementing with substrates (B12; CoQ10; carnitine etc) that support mito function rather than targeting this key regulator.

    I'd never heard of PGC1 - alpha myself, but once I stumbled upon it, it turned up everywhere. For example try Googling PGC1- alpha and :

    bipolar disorder; autism; Parkinson's; Huntington's disease; type II diabetes/metabolic syndrome; cardiomyopathy; schizophrenia; COPD; ALS; Duchene's muscular dystrophy to name a few.

    My problem with the exercise studies is that in focussing on pain and fatigue signalling from skeletal muscle we are missing a large part of the elephant. Anecdotally, when I overdo things physically it exacerbates my other symptoms such a cognitive problems; gut problems and temperature regulation. Likewise gut problems can trigger physical and cognitive 'fatigue' and cognitive fatigue can leave me unable to walk with no association whatever with physical activity. If I'm unable to moderate my core temperature in hot weather then everything goes to hell on a handcart.

    This may be just my own experience of our disease but from our numerous discussions here it does seem to be typical and suggests a global systemic inability to meet our energy needs rather than just an abnormal reaction to physical exercise. If I could sort out my gut issues; temperature regulation problems and brain fog I'm pretty sure I could manage 95% of daily life without needing to worry about breaching the anaerobic threshold. Others may differ.

    Just two examples from the above list.

    COPD is a chronic inflammatory lung condition often associated with smoking. People with COPD have high levels of oxidative stress (PGC1-alpha also helps control oxidative stress) and progressively experience exercise intolerance. It appears though that this exercise intolerance is not due to reduced lung capacity but PCGC1-alpha mediated mitochondrial capacity in skeletal muscle :

    Peroxisome proliferator-activated receptor expression is reduced in skeletal muscle in COPD


    BTW - Tobacco smoke contains cyanide - a mitochondrial toxin.

    Huntington's disease is one of many progressive genetic mitochondrial diseases although one that normally doesn't manifest itself until middle age. The symptoms of Huntington's may strike a chord with PWME and include myoclonic jerks :


    PGC1-alpha is downregulated in the brains of Huntington's patients which suggests a potential therapeutic route.

    Here's a useful summary of the role of PGC1-alpha


    Whether or not upregulation of PGC1-alpha via exercise or a range of compounds (Resveratrol; Quercetin; Luteolin or the type II diabetes drug Bezafibrate etc) will work in PWME is another issue. TNF alpha has been found to be raised in PWME and TNF alpha 'silences' expression of PGC1-alpha. TNF alpha antagonists may be another route.

    I'm not aware of any studies on ME/CFS and PGC1-alpha to date.
  10. GaryK


    Canada Niagara Falls
    Cort ..first off thanks for posting this.

    I have a question for you though....one I'm interested in as well as I cant affort the test either ...how does one asume their heart beat anarobic threshhold level ? I mean its great to watch your heart beat but howdoes one actually calculate that number for exercise heart rate?

    thanks GaryK :)
  11. Cort

    Cort Phoenix Rising Founder

    There is a way to do that and I'm not sure right now of the exact process and I think it will be explained in future video's. If not there then I'll be able to post it and I will.
  12. Tristen

    Tristen Senior Member

    Northern Ca. USA
    I'm interested in how this treatment approach might affect the pathophysiology behind "Crashes" that have nothing to do with crossing the anaerobic threshold. "Post Exertion" is surely the number 1 offender, but there are other ways at least for me, to have the same exacerbation of symptoms (crashes), without raising my heart rate (ie, Heat, infections,mental stress, and stretching or other use of muscles, etc).

    Since having a good result on my VO2 max this last time, I have been attempting very cautiously to expand my activity boundary, with minimal success. So, I'm very interested to see what she has to say about this because (so far) from my experience, the VO2 max results are reflective of my baseline condition, but not my exertion capacity.
  13. DAnnFL


    Crashes and AT

    Tristen - Not sure if my experience might be of use, but just in case here's what I've found so far:

    I had VO2Max testing 5 years ago at the Hunter Hopkins center (DrLapp's team) in NC. They gave me my Anaerobic Threshold (AT) heartrate and had me wear a Polar heart monitor like the one pictured in the article that had an alarm to warn me when I was crossing the AT. It was EXTREMELY helpful; for by making sure I didnt go over my AT, I had fewer crashes and less pain. It makes SO much sense avoid the buildup of lactic acid in the muscles and then they wont hurt as much; avoid the extra stress on the heart and avoid triggering cytokines.

    Wearing the monitor daily was an eye-opener. It taught me what my limits really were even in everyday activities, not just exercising. It was interesting that during 'crashes' even light activities like combing my hair could send me over my AT! The alarm going off forced me to take a break and prevent over-doing it = fewer and less severe crashes.

    Emotional and mental stress would also set off the alarm at times and it was interesting to see how the deep breathing exercises from the Telehealth study could quickly bring my heart-rate back down. This, in turn helped me to have fewer post-stress crashes.

    Using the monitor also helped my friends learn to respect my limits, for there was a tangible alarm telling them I had passed my limits even when I still looked fine. When I had to have physical therapy, the alarm helped the therapist to respect my limits, too.

    Just a thought for those who can't afford VO2Max testing: If you live near one of the sites doing testing, like Dr. Klimas is currently conducting in Miami, you can get free VO2max testing by participating -- keep your eyes open for testing near you!
  14. Tristen

    Tristen Senior Member

    Northern Ca. USA
    Hey DannFL, yea very helpful. I need to figure out how to decipher my anaerobic threshold from my VO2 max report because it doesn't list it directly.

    I was just questioning whether the pathology involved in post exertion crashes would also explain non exertion crashes (ie, Heat, muscle use, infections, etc). Do all cause oxidative stress? Certainly crossing ones AT is not the only way to crash. I think there are many variables influencing the pathology and the avoidance of PEM. I also know that my AT can't always be the set point for max exertion to avoid crashing. Sometimes it's much lower depending on a number of variables.

    Gonna check out the video's, get my AT figured out, and probably get one of the watches. here a formula. for me/cfs. 220 - your age) * 0.6 = anaerobic threshold (that is, 60% of your maximum heart rate)
  15. Cort

    Cort Phoenix Rising Founder

    That's great news...I really look forward to trying this. I want to note that Dan uses his heart rate upon getting up in the morning as his key factor in determining how much he can do. If its raised a bit he does NO exercise. In fact he told me he usually does his exercise routine only a couple of days a week. So the 'exercise' program is also a 'no-exercise' program as well as he now knows when to cut back.

    Even doing the program just a couple of days a week he has been able to increase the amount of weights he lifts (from 3 lbs to 8 lbs) (always in the prone position)... (this is from a guy who was apparently something of a exercise freak prior to CFS - he told me he was at the gym at 5:30 every morning).

    I could use those deep breathing exercises as mental/emotional stress causes my breath to shorten and my muscles to clinch up. that is all about awareness and then having the discipline to do things like that.
  16. SOC

    SOC Senior Member

    My experience is very similar to DAnnFL's. I also did VO2Max testing about 5years ago at Hunter Hopkins and discovered that virtually all my daily activities put me over my AT. The heart rate monitor with the alarm was a real eye-opener, not just for me, but for my family and my students.

    I cut back HUGELY on my activities based on the feedback from the heart rate monitor. I also kept very careful logs for a couple a weeks that included AT for certain daily activities, and avg HR over the day and how I felt. Moderating my activities based on staying below my AT was one of the best things I've done for my ME.

    Once I moderated my activities based on that info, I had fewer flares/relapses -- especially ones with muscle pain. But it means that I have to dawdle in bed in the morning, sit to shower (or do much of anything) and walk v-e-r-y s-l-o-w-l-y.

    I'd like to add some points from my experience that I'm not hearing from Dr Klimas or anyone else (so far). For several years I managed my behavior and activities to stay just below my AT. I didn't have as many pain flares and I think I maintained my level of (ill) health during that time. However, I didn't get better, either. I was happy to be doing as much as possible (even if it wasn't much) without making myself worse.

    When I caught H1N1 and had a major infection-induced relapse (the whole bag of worms -- pain, exhaustion, terrible brain fog), I couldn't recover.

    Some time after that I started on Valcyte, which has given me big improvements so far (bedbound to housebound), but I've found that in order to really make progress, I have to rest way more than I would if I was staying just below my AT.

    So, for me, at least, staying below my AT seemed to moderate my pain-type flares, but didn't do much for the more immune-type ones (exhaustion, sore throat, swollen lymph nodes). And I wasn't getting better, I was just not getting worse.

    While I've been on Valcyte, it's been clear that if I do as much as I can without going over my AT, a make some, but small, progress with lots of slide-backs. If I force myself to uber-rest, I improve faster and don't have the regressions.

    I have to question, for me, anyway, the wisdom of maintaining activity near the AT limit until I'm in the "mild" range -- which looks to me like a recovery phase where we are probably not dealing with serious infections (or only intermittently).

    In conclusion, for me, moderating my activity to just below my AT educated me and those around me to what was needed to stop getting slowly worse. That was amazingly useful. But in order to get better, I have had to stay well below my AT.

    Just my experience, YMMV.

    PS I'm wondering if Dr Klimas' exercise experience/recommendation is based on people who are routinely taking the immune modulators she often recommends. That may alter how the patients react to exercise. Just a thought....

  17. Cort

    Cort Phoenix Rising Founder

    Thanks SickofCFS - (and I can see why you are :cool:) - Klimas does include immunomodulators with some of her patients and one person I interviewed who really did spectacularly on the program was taking one (immunovir I think) and she was doing other things but she gave most of the credit to her exercise program which required her to do exercise without, how do you say it, really exercising.

    She never sweated...her heart rate remained low - and yet she was able to build up a considerable amount of strength over time. She will do the VO2 max test again in August and it'll be interesting to see what it tells her..She was a very good responder to that program. I imagine many people do not respond as well. s

    Anyway I wonder if this kind of really stringently monitored 'exercise' program might have or might in the future help with you ?
  18. SOC

    SOC Senior Member

    I do hope this kind of 'exercise' program will help me in the future. :D

    At the moment, I'm sweating just from daily activities like making dinner, hanging laundry -- basically anything that keeps me mildly moving for more than about 10 mins.

    I tried a very gentle yoga class with an understanding teacher. I wore my heart rate monitor and stayed below my AT. I crashed and PENE'd anyway. :( I suspect the getting to the class plus the yoga attempt was too much total even though I stayed below my AT. The most basic yoga on Wii Fit also crashed me, even though I stayed below my AT. I have to admit that it was discouraging.

    I think the idea of exercising below our AT is a big plus for PWME. I believe many PWME will be able to maintain some degree of conditioning and muscle strength they wouldn't otherwise.

    I suspect, based on my personal experience, that the technique is still a bit crude and may not account for some of the finer details of ME. For example, I wonder if total daily energy consumption isn't as (or more) important than AT at any given point in time. This may be a bigger issue for the more severely impaired or those who have been ill longer. Just a thought.....

    This whole "exercise below your AT" is a great idea for PWMEs, but may not be appropriate for all of us, or at all points in our illness.
  19. Cort

    Cort Phoenix Rising Founder

    That's rough. We are still in the learning stages. I'll bet just getting to the yoga class blasted you. One of the people I talked to started off 5 mins aerobic, 5 mins active rest (on the floor light weights), 5 mins aerobic, 5 mins active rest - that was it!

    Dan only does the exercise routine a couple times a week - that's it! Its amazing....
  20. SOC

    SOC Senior Member

    Goodness! That program would probably kill me, lol! I was lightly exercising for 2 minutes (without exceeding my AT) and resting supine for 6 minutes. Still crashed. :(

    I've been trying some isometrics flat on my back in bed before my daily nap. Don't know if it's doing me any good, but at least I feel like I'm doing something. :D
    Nowhere near my AT, though. :D

    I look forward to being able to do some exercise closer to my AT sometime in the future. I keep an eye on the Snell and Stevens work on which this is all based. I think it's brilliant. Still trying to find a way to make it work for me, though.

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