olliec
Senior Member
- Messages
- 111
- Location
- London, UK
Before reading on please be aware I am moderately affected (mostly housebound, but somewhat vertical) and some of what I am about to say is inapplicable and inappropriate for those of us with more severe disease states.
My ME has a 16yr duration with sudden infection onset. In recent years my activity envelope has shrunk. I used to be able to walk a lot and would just feel sicker, but now it causes relapses that last days, weeks or months. In the last year or so I waited until I reached a stable plateau, and then started using slow walking (with rests) to gently and very slowly increase my "range". I used a heart rate monitor, kept my heart rate low, rested a lot, walked slowly, was very cautious with my goals. It was a complete failure. My health got worse and worse until I was unable to continue. Even a few minutes walking left me so ill I was completely disabled. In fact over the last two years I'd say that the combination of (intermittently) using walking as exercise, and keeping my heart rate down has been very damaging to my activity capacity. I am weaker (low creatinine supports my sense I have lost muscle), sicker, and more susceptible to PEM than eve before. In fact my health deteriorated physically so much I bought my first wheelchair.
In addition to all of this a lot of us are getting older (I'm 42) and my cholesterol is high, my balance is poor, I am weak and struggle to lift objects, I'm at higher risk of falling, diabetes, heart disease, and so on because I'm so immobile. Less muscle probably also means less mitochondria which may well not help my energy levels. In a broad sense I feel weaker than ever. Who says ME plateaus?! Lack of exercise also means I am obviously very unfit and my body is very inefficient, putting greater strain on my heart, lungs etc when I walk up the stairs or pick up a bag. Walking up the stairs gripping the handrail has had my heart rate fly over 120bpm (though I know many endure much worse).
In this vein, earlier this year I stumbled upon Dr Sarah Myhill's web site page about exercise http://goo.gl/wDWEYb She recommends patients (who are stable) do HIT, not endurance exercise. In particular she recommends an approach by Dr Doug McGuff called Body By Science, which is actually very simple in that you pick a muscle group and exercise it slowly with very high intensity until it fails (ie muscle shaking, painful, and stops moving). McGuff's system uses gym machines (12mins of exercise per week), but Myhill says to do a version of it at home using our bodyweight: press-ups, squats, etc. This was particularly interesting to me as my 23andme DNA results suggest I am likely to be more of a "sprinter" than an "endurance" "athlete".
I have been rather startled to find that even though a few minutes of slow walking lately has been enough to send me into a tailspin, I have been able to perform slow, intense short-duration (painful!) press-ups without much problem. I started with 10 seconds once a week, and some months later can now do 120 seconds each week with no sign of relapse. In recent months I have become a little stronger, and my PEM is slightly reduced. The inescapable conclusion is that for me at least the relapse trigger appears to relate more to the DURATION of the exercise, rather than the INTENSITY, and that I seem to have stumbled upon a way of exercising that is allowing me (very slowly and cautiously) to improve my fitness and strength by small amounts, and possibly even have a small positive effect on my ME symptoms. I'm aware this is completely contra to the experience of others who have found keeping their heart rate DOWN has been most helpful. For me that appears not to be the case.
This is what an (annoyingly!) healthy person looks like doing Body By Science, but using his bodyweight instead of machines.
Interestingly the guy in the video is a British sports science lecturer and he told me on Twitter that anecdotally he has heard of ME patients who have found HIT to be somewhat helpful in improving their fitness, as opposed to more traditional exercise.
I'm not suggesting HIT as a treatment for ME so much as an approach that (for me at least) seems to be allowing me to become a little stronger, and avoid the long-term downsides of a very sedentary life which we all know are significant in terms of other chronic diseases we are increasing our risks of developing over time.
I had a look through the posts on the forums and didn't see much about HIT. Has anyone else had any success with this style? It looks like Toby Morrison on Youtube has clients doing some form of strength training. I noticed a mention of Michael Moseley's BBC programme about HIT on the forums, but not much else.
Does anyone have any sense of why tiny bursts of very intense exercise might be less harmful to this ME patient than the more traditional type of low impact exercise that lasts a little longer?
My ME has a 16yr duration with sudden infection onset. In recent years my activity envelope has shrunk. I used to be able to walk a lot and would just feel sicker, but now it causes relapses that last days, weeks or months. In the last year or so I waited until I reached a stable plateau, and then started using slow walking (with rests) to gently and very slowly increase my "range". I used a heart rate monitor, kept my heart rate low, rested a lot, walked slowly, was very cautious with my goals. It was a complete failure. My health got worse and worse until I was unable to continue. Even a few minutes walking left me so ill I was completely disabled. In fact over the last two years I'd say that the combination of (intermittently) using walking as exercise, and keeping my heart rate down has been very damaging to my activity capacity. I am weaker (low creatinine supports my sense I have lost muscle), sicker, and more susceptible to PEM than eve before. In fact my health deteriorated physically so much I bought my first wheelchair.
In addition to all of this a lot of us are getting older (I'm 42) and my cholesterol is high, my balance is poor, I am weak and struggle to lift objects, I'm at higher risk of falling, diabetes, heart disease, and so on because I'm so immobile. Less muscle probably also means less mitochondria which may well not help my energy levels. In a broad sense I feel weaker than ever. Who says ME plateaus?! Lack of exercise also means I am obviously very unfit and my body is very inefficient, putting greater strain on my heart, lungs etc when I walk up the stairs or pick up a bag. Walking up the stairs gripping the handrail has had my heart rate fly over 120bpm (though I know many endure much worse).
In this vein, earlier this year I stumbled upon Dr Sarah Myhill's web site page about exercise http://goo.gl/wDWEYb She recommends patients (who are stable) do HIT, not endurance exercise. In particular she recommends an approach by Dr Doug McGuff called Body By Science, which is actually very simple in that you pick a muscle group and exercise it slowly with very high intensity until it fails (ie muscle shaking, painful, and stops moving). McGuff's system uses gym machines (12mins of exercise per week), but Myhill says to do a version of it at home using our bodyweight: press-ups, squats, etc. This was particularly interesting to me as my 23andme DNA results suggest I am likely to be more of a "sprinter" than an "endurance" "athlete".
I have been rather startled to find that even though a few minutes of slow walking lately has been enough to send me into a tailspin, I have been able to perform slow, intense short-duration (painful!) press-ups without much problem. I started with 10 seconds once a week, and some months later can now do 120 seconds each week with no sign of relapse. In recent months I have become a little stronger, and my PEM is slightly reduced. The inescapable conclusion is that for me at least the relapse trigger appears to relate more to the DURATION of the exercise, rather than the INTENSITY, and that I seem to have stumbled upon a way of exercising that is allowing me (very slowly and cautiously) to improve my fitness and strength by small amounts, and possibly even have a small positive effect on my ME symptoms. I'm aware this is completely contra to the experience of others who have found keeping their heart rate DOWN has been most helpful. For me that appears not to be the case.
This is what an (annoyingly!) healthy person looks like doing Body By Science, but using his bodyweight instead of machines.
I'm not suggesting HIT as a treatment for ME so much as an approach that (for me at least) seems to be allowing me to become a little stronger, and avoid the long-term downsides of a very sedentary life which we all know are significant in terms of other chronic diseases we are increasing our risks of developing over time.
I had a look through the posts on the forums and didn't see much about HIT. Has anyone else had any success with this style? It looks like Toby Morrison on Youtube has clients doing some form of strength training. I noticed a mention of Michael Moseley's BBC programme about HIT on the forums, but not much else.
Does anyone have any sense of why tiny bursts of very intense exercise might be less harmful to this ME patient than the more traditional type of low impact exercise that lasts a little longer?
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