Trial By Error: Letter to British Journal of Sports Medicine from CPET Experts

This seems a strange reading of my experience. It was going great, with zero PEM and zero payback and a discernible increase in muscle strength, daily, for a good couple of weeks, until an unrelated problem - not a 'supposedly' unrelated problem - stopped me. It did work. There's no 'maybe it would've worked' about it.

Yes, it's an anecdote, but as you say, you're willing to accept anecdotal evidence for other things.

I'm a bit confused at why we seem to be in such disagreement here. I'm saying that there's a possibility that anaerobic strengthening may be possible, and I accept that there might be tight limitations on it and that it may not be possible for all PWME. I'm also saying that we need scientific evidence. Is that so far from your position?

 

Interesting- thanks.

I can't now, thanks to my injury but I suspect I've also lost strength through being repeatedly bedridden. I've visibly lost a great deal of muscle in my legs.

 

@Sasha, you were involved, reading the threads were I mentioned my training on the other place, 6+ years ago. My philosophy was the same as you seem to have now, it didn't work, it appeared to work, to start with, largely due I think to, I forget what it's called but basically nerve optimisation, the training made my nervous system better at lifting weights, it took nearly a year before my body needed to put on muscle, before I got "stronger", and from that point on it was all downhill, despite, or probably because, of me getting stronger my ability to actually do things decreased.

 

Interesting - I was told that my difficulty walking might not be to do with strength as such but loss of so much muscle that it's now a nerve-related problem. Just remembered that.

 

The general approach to training muscles to do a particular thing is to do that thing, using those muscles, it won't necessarily make them any stronger, just better, at that particular thing. Training other things in the hope of generally improving performance, across the board, is not IMO a sensible approach, particularly for pwME.

With pwME this approach has problems, and TBH I'm not sure what to suggest. Although swimming pool walking does come to mind as a therapeutic approach for normal people I shudder to think how it could affect a pwME.

You should note that I am sitting, slouched, supported by 2 pillows, having been unable to get anything done today, before acting on my physical health advice

 

I like swimming pools, i don't swim much, i just move slowly and relax but its fun. I do pay for it though

 

I have access to a heated pool and tried this many years ago and would not recommend it. First, the warm water is disastrous if you have autonomic issues, and pushing against the water tires the muscles much quicker than regular walking. I almost collapsed.

 

I don't know if comparisons can sensibly be made between dogs and humans. But I remember when my dog was doing hydrotherapy following a serious injury and surgery that I was told 10 minutes of it was the equivalent in energy expended to the dog doing an hour's strenuous walking. I've seen the same 10 minutes swimming = 1 hours strenuous walking for dogs a few times from various sources.

 

The link doesn't work anymore. Has anyone a copy?

 

The site is just having some technological problems. It is being worked on and will probably be functioning again soon.

 

I make the experience that a very low-level version of HIT, i.e. some seconds load, then longer recovery - shorter duration over longer duration - is ok for me; also, a low-level resistance training - few repititions (5 to max. 10), then recovery, not until muscle exhaustion - works well for me. I can barely train my legs, though, that causes terrible sore muscles. E.g. pre-illness I did squats with ca. 50kg weight, ca. 40-50 reps, today no weight, "gluteus maximus squats" (easier for the legs), 3x5 reps. (long recovery phases). I had to decrease weight and can't increase it or anything anymore.

A longer aerobic training - something like basic endurance training, where resistance is low, duration is long and the pulse normally remains under 130/140 bpm - is very bad for me; e.g. going for walks is much harder than doing a low-level resistance training.

I want to stress that I trained a lot and hard; volume today is max. 20% of pre-illness volume. My feeling is that (relatively) untrained people who get ME should be cautious with starting a new training. I can only do stuff I was "used to"; new training impulses don't work. For everybody, starting a new training is exhaustive. I can imagine for someone with ME it will certainly cause PEM. I don't know how low someone would have to start with ME. And I am certain training won't bring improvement.

In vanNess' talk about the 2 day CPET he explains this "HIT principle for ME" in more detail, with very interesting every-day-life tips, and for me it was helpful.
https://www.s4me.info/threads/2-day...pers-your-experience-discuss.1491/#post-25011

Edit: Just wanted to add that my "exercise" is part of my every-day-life, i.e. I can do that on a day, or get a visit or...I can't do both.

Edit2: For me, my training was everything. It's not some 'extra' stuff, it's an essential part of me.

 

Do you mean bodyweight exercises? These are much harder than training with weights (unless you add weights to your own weight ). I think this is a misconception: free bodyweight exercises are advanced.

 

I think from a metabolic viewpoint this is not correct. Also, you use different muscle groups for long duration and short duration. But I need to think about it - the main part is to train until muscle failure which should lead to muscle gain, so it's interesting to think about it.

On the other hand, I'd say you won't find a bodybuilder who makes more than 6 reps per set - there must be a reason.

In my case - I can't do many reps, even without weight. It is much better to use weight and make few reps.

 

What about Pilates or Yoga. Pilates helps with core muscles and posture and I don't think is very aerobically taxing. Even things like sitting on an exercise ball instead of a chair will help massively in improving core muscles. And you don't have to do any of these things for long. If you learn a few moves then you can do them when watching tv. I quite often sit on the floor and try to do some stretches - it does help ease the aches and pains.
I also had a thing called a flex-bar - a long pole with small weights at the ends. Basically you stand in a certain pose and then with your arm held out you wobble the bar. Depending on how you are positioned it targets different muscle groups. By making the bar wobble/vibrate it is supposed to transfer that vibration to the muscle group and make it work in a less energy demanding way. I don't think I ever really used it enough to say whether it worked or not but the theory was good and my osteopath suggested it knowing that other muscle toning exercises were too hard for me.

 

For me Pilates and Yoga are really hard, Yoga more than Pilates because everything hurts.

'The core' actually is everything except the arms. To strengthen the core means training the legs, the stomach, the back, the butt, the chest. Advanced exercises are free weight exercises like squats, one-leg squats, dead lifts, snatch/clean&jerk, pull-ups...or bodyweight exercises, like planks, burpees...great core exercises!

Oh sorry if I bubble too much...it's just a passion, I always lose myself.

 

This is what concerns me. Fast forward to 25:28 minutes. It took months of aerobic exercise to realize it was doing this athlete more harm than good.

https://www.youtube.com/watch?v=q_cnva7zyKM

 

@Mij, that's a highly interesting talk by vanNess!

 

When I was first ill I started practising very, very gentle yoga. I absolutely loved it. I even found it helped manage pain a little. Now I am severely affected, even a tiny amount of extremely gentle stretches, done while lying down will have the effect of someone hitting the off switch for days. Even if I feel fine when I do it. I've even sat down and worked out a bare minimum to do and not allowed myself to go over that. My body just can't handle it.

I adore pilates. It hates me....

I miss exercise sooo much!

 

I'd agree with this to some degree within the first 3 years of illness. However after that point I feel improvements can be made, but not in 6 months, more like 6 years.

 

Maybe one thought about the marathon athlete he is talking about starting at 25:28:
As I understood it, her aim was to start with basic aerobic training in order to slowly increase her fitness level (e.g. running bigger distances). It contains increasing workload over time and accepting pain (because: no pain, no gain) in order to improve. It's a classical approach in healthy people. My experience is this doesn't work in ME, and it shouldn't be aimed at increasing the fitness level but to ensure functionality (if possible).