Safe Exercise? The Heart Rate Based Exercise Video Series with Dr. Klimas on ME-CFS Community Center: Pt I

July 24, 2011

Posted by Cort Johnson

In collaboration with Dr. Klimas, Dan Moricoli of the ME-CFS Community and Knowledge Center has created a video series focusing on using VO2 max and heart rate measures to create a relapse free ‘exercise’ program to enhance ones health.

 

Part I focuses on using the VO2 max test to determine at what heart rate patients enter the danger zone – their anerobic threshold. It features a patient, Brenda, Dr. Klimas and her exercise physiologist Connie.

 

Parts II and III will focus on discussing what the test means and how to implement a relapse free exercise program (even for the very ill) and will be released over the next couple of weeks.

The “Anti-Exercise’ Exercise Program -A chief tenant of the heart rate based program is to kind of exercise without exercising…ie you never break a sweat…you don’t breath hard, you never allow your heart rate to get high; this program, in fact, is so different from what we think of normal exercise that it could almost be viewed as an ‘anti-exercise’ exercise program…yes, you do exercise but you do it so mildly and slowly that it doesn’t fit the healthy communities conception of exercise at all.

Nevertheless it does appear to be able to help rehabilitate parts of these patients systems. It has significantly improved the quality of life of several people I talked to. (A fuller piece will follow).

Nobody is healthy – nobody is ‘exercising’ the way healthy people exercise but several people have reported significant improvements in their quality of life and health. Dan’s rather horrific relapses – which used to occur almost daily and were punctuated by myoclonic jerks – spasmodic uncontrollable movements of his limbs – have been reduced tremendously. He is still very limited in what he can do – but he is much, much better off.

I am unable to afford the VO2 max test but I believe the series will provide ways for people like me to use a cheap heart monitor to determine their correct activity level. After that it’s a matter of the dreaded “D” word – discipline. I will report on how I do.I believe over time that this heart rate based approach will definitively prove that ME/CFS is a physiological disorder.Dan has created an Exercise Group area to display the video’s, provide resources and talk about the approach.

This is just the beginning of a series of video’s by Dan and Dr. Klimas on ways to enhance  your health and quality of life using heart-rate based activity management, yoga, pilates etc. – simple, slow, boring things that can help :) .

Phoenix Rising – a certified 501 (c) 3 non-profit

5 comments

{ 5 comments… read them below or add one }

Corinne July 26, 2011 at 6:25 am

Hi Cort

I thought this was extrememly interesting being that my exer-intolerance is so severe, however I wondered if you knew if the people who claimed to be improved by this had been diagnosed with OI/POTS. As you know with OI the dysfunctional ANS can sometimes raise a heart rate without the corresponding activity one would expect. For instance, I know when I have stood upright too long as my heart starts to pound, probably in response to my dropping BP. Also, I know when I have been on the computer too long as I can suddenly feel my heart start pounding even though I have not done any exercise (except perhaps mental. ) I know others who have experienced the same thing. These instances will in fact trigger mini-relapses in me though no exercise was done. The opposite can also happen as shown when I did my VO2 max stress test. Though I felt as though I were working extremely hard, Dr. P told me after that my heart rate did not increase proportionately to the amount of work I was doing (which may substantiate the premise that the blood is not being pumped to the muscles to flush out the toxic by-products as mentioned in the Light papers you wrote about.) I will be curious to know how it works for you. :-)

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Cort July 26, 2011 at 6:48 am

Thanks Corinne, I will ask Dan and hopefully Dr. Klimas about this. POTS seems like the wild card here – how can you exercise when your heart starts pounding everytime you simply stand up. I do know that the 3rd video will have ‘exercises’ for the severely ill and many of the exercises are actually done lying down so that you can work your muscles without add the stress of standing to the equation….

In my experience heart pounding be caused by mental as well as physical stress. When you’re really bad off it seems like almost anything can contribute to that.

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Barry Fotheringham July 26, 2011 at 2:19 pm

I run a Facebook group focused on using a Heart Rate Monitor for those with M.E. – new members always welcome… https://www.facebook.com/groups/ME.CFS.HRM?ap=1

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Chris April 10, 2013 at 5:15 pm

Corinne, I am currently experimenting with what is sometimes called “home tilt table therapy”–you can find an abstract about this from Julia Newton’s great Newcastle group at PubMed, PMID: 19912315. There is more work on this in the context of neurally mediated syncope, but I am assuming that fainting and feeling dizzy or light headed belong in the same large category of ANS dysregulation.

In essence, this consists of leaning gently against a wall with one’s heels about 15 cm in front of the wall, one’s shoulders against it, in relaxed posture, for as long as is comfortable. It is emphasized that if there is the faintest danger of this provoking a faint, you need to have a “drop zone”–deep cushions I assume –and a friend standing by. You do not try to tighten your leg or abdominal muscles to compensate, as one does while waiting anxiously at a check-out line. You are trying to let your ANS relearn how to modulate BP, HR, venous tension, etc. so as to adjust to the standing position all by itself–it used to know how. There is some evidence that this works, and the Newton article (I only have the abstract, pay wall..) suggests that after 6 months patients also experienced less fatigue.

I have only been doing this for about 10 days, but already notice a change for the better in both OI and fatigue, and have gone from 8 mins to 22 mins. It is very boring–I have chosen a spot opposite my TV, and try to choose tennis matches or other things that will entertain me without triggering intense anger, as most current political stuff does. I have noticed my BP is steadier since beginning this.
Best, Chris

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sharon hagan June 22, 2013 at 4:03 pm

Hi there, I am trying to join the exercise group on the page and it won’t send the confirmation email to my inbox for me to confirm, please help, thanks, Sharon

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