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

[Sasha]

I really see no point in exercise protocols with this disease, even if they can be done without eliciting a crash. We don't have enough energy by definition, and it doesn't make any sense at all to waste it by running (or walking) around in circles.

OTOH, muscle wastage in and of itself can reach a point where it starts to affect function and it takes you more energy to do with weak muscles than what you could do with stronger ones.

 

[Wonko]

OTOH, muscle wastage in and of itself can reach a point where it starts to affect function and it takes you more energy to do with weak muscles than what you could do with stronger ones.

I started because I kept falling, and was clearly getting weaker, difficulty getting out of a chair etc., so thought improving strength would help. It did, at first, although it took me over 6 months to be able to bench press an empty bar safely (I could lift more but not without consequences), or get above a quarter bodyweight squat. Slow start, low reps, rapid reps, long rests in between sets to allow HR to drop, all still left me in this state.

I had never previously been interested in weights, or sport in general, and chose free weights mainly because I had read that pwME could use them much more safely than aerobic type exercise, and because weight could be started and added to at a much lower incremental rate than say, bodyweight exercises, would be both easier and more controllable. As per normal for me I did a lot of research to determine what was needed, and what was likely to help, and spent what was at the time a considerable amount of money, to me, on doing it safely.

I've since tried, on several occasions, very low weights, for 1 set, once a week, etc. It may work as a method for others, but for me, not so much, I deteriorate within a week or 2.

I do not recommend them for pwME.

 

[Sasha]

I started because I kept falling, and was clearly getting weaker, difficulty getting out of a chair etc.,

I'm also heading that way.

There was a Michael Mosley programme on TV this week about exercise, in which he reported on research that shows that if you exercise a muscle to the point where you can't do any more reps, you get the same strength benefits regardless of whether you use a heavy or light weight. It will take you fewer reps to reach the 'can't go on' point if you use a heavier weight, of course.

It seems likely that going for max load once or twice a day could therefore help. I found this when I was trying to strengthen my arms last year (before I wrecked my wrist). And it presumably would still be anaerobic.

 

[Alvin]

I'm also heading that way.

There was a Michael Mosley programme on TV this week about exercise, in which he reported on research that shows that if you exercise a muscle to the point where you can't do any more reps, you get the same strength benefits regardless of whether you use a heavy or light weight. It will take you fewer reps to reach the 'can't go on' point if you use a heavier weight, of course.

It seems likely that going for max load once or twice a day could therefore help. I found this when I was trying to strengthen my arms last year (before I wrecked my wrist). And it presumably would still be anaerobic.

But being stronger won't help us, we still need energy to do things. A strong muscle with no energy means no work gets done.

 

[Wonko]

But being stronger won't help us, we still need energy to do things. A strong muscle with no energy means no work gets done.

In fact it's worse than that, more muscle means energy gets burnt faster, whilst doing the same activity. More importantly it means that, at least for a while, your feeling of how much is left in the tank will be wrong. Running out of energy enough so you can't stand up (when you are not used to and not expecting this to occur) is a PITA. On occasion I had to drag myself the last couple of hundred meters home, often on the ground, took hours, with no offers of help from the people who were stepping round or walking over me. Fortunately for me I was barely conscious, if I had have of been I would imagine that could have been unpleasant.

 

[Sasha]

But being stronger won't help us, we still need energy to do things. A strong muscle with no energy means no work gets done.

I think it's a trade-off. Not all of us will be on the right side of it.

 

[ArtStu]

I've spent 10 years of my 12 year illness trying to get back to walking 20 miles in one go fairly comfortably, I'm at 5 miles now, and have settled at that for some time now, any more isn't really pleasurable. I choose to do a walk most days above anything else mainly because walking is and was a passion of mine.
Having said that I do not want any research money wasted on GET, or in any way endorse their concept of deconditioning, fear avoidance. etc. It certainly hasn't cured me, and I know I'm unusual here in that I can do it.

 

[Valentijn]

OTOH, muscle wastage in and of itself can reach a point where it starts to affect function and it takes you more energy to do with weak muscles than what you could do with stronger ones.

It's pretty speculative though, as to whether or not deconditioning is avoidable when generally operating at an energy deficit. I think we have a tendency to try to avoid absolutes, even when the evidence indicates the absolute is correct, and we end up with grossly unlikely speculation - "maybe exercise can be helpful for ME patients if they're left-handed, have a Red Bull enema beforehand, and only hop in circles, all during a full moon."

I think it's safe (and literally safer) to accept a blanket statement that exercise is dangerous and unproductive for ME patients. Maybe science will find a safe and productive exception some day, but speculating about very unlikely scenarios doesn't seem useful at all, especially when it could lead to behavior which is very unlikely to be helpful and very likely to be harmful.

Exercise for ME is on par with drinking bleach for autism: maybe it's a miracle cure (or at least not harmful) with some brilliant unknown mechanism by which it works if done just right. But it's far more likely that it's no help at all, and never will be, in any form. With some potentially very nasty side effects.

 

[Wonko]

OTOH, muscle wastage in and of itself can reach a point where it starts to affect function and it takes you more energy to do with weak muscles than what you could do with stronger ones.

Whilst in principle this is a valid idea......
I would only apply it to muscles which are essential, such as core muscles. These need to be strong enough to support the weight of your upper body or they will fatigue, very rapidly, and they will be liable to overstrain and damage. These muscles are only likely to get too weak if you don't sit or stand enough e.g. if you are mainly bed bound, although my old friend poor posture can have an impact on this. For example if, like me, you sit slouched and propped up by pillows.

I personally haven't worked out a useable solution to this problem with this particular muscle "group", but in theory it could be helped by several simple floor based bodyweight exercises e.g. planks, leg lifts etc., but I find these sorts of exercises much more damaging than I found weights, there is bound to be something that "helps", if it's deemed medically enough necessary, I'm just in a situation were I can't afford the risk/cost of trying stuff out.

But...the only muscle groups I would consider worth any attempt at strengthening are those that comprise the "core", nothing else (no other muscle group) is likely to weaken you enough if too weak to be worth the cost....and in general I've found that eventually, when in an upturn, my core is in fact strong enough, in such a situation my general strength is at least 5 times greater, I've measured it lol. It's the effects of ME that's making it not so, and training when in a downturn - quite a bad idea IMO.

ETA - sorry, somewhat garbled but I hope it makes the point I was intending, if a bit waffly, I did a bit too much yesterday, and I have a cat telling me to calm down and go to bed, using the medium of yelling in my ear every 10 seconds.

 

[Sasha]

I think it's safe (and literally safer) to accept a blanket statement that exercise is dangerous and unproductive for ME patients.

I see a trade-off of dangers. I'm worried that I'll soon be unable to walk safely. That will bring its own dangers. Exactly what the trade-off is may differ from patient to patient: some may be in a zone where they can do enough anaerobically to strengthen muscles without using up so much energy that they make themselves worse overall. Or perhaps you're right and it is the case that all exercise is counterproductive.

But I think that's an empirical matter.

Maybe science will find a safe and productive exception some day, but speculating about very unlikely scenarios doesn't seem useful at all,

Maybe I'm unfamiliar with the science on sub-anaerobic exercise but from my lay perspective and the reading I've done, I don't know that it is an unlikely scenario. I just don't know, and I'd be very happy to hear about the evidence or rationale either way.

especially when it could lead to behavior which is very unlikely to be helpful and very likely to be harmful.

This is a good reminder that we all have to be extremely careful.

Exercise for ME is on par with drinking bleach for autism: maybe it's a miracle cure (or at least not harmful) with some brilliant unknown mechanism by which it works if done just right. But it's far more likely that it's no help at all, and never will be, in any form. With some potentially very nasty side effects.

Again, maybe I'm just unfamiliar with the science but I don't see those two things as on a par. Maybe you're right - I don't know. What's your basis for being so certain about this?

Is there evidence one way or the other about the status of our anaerobic systems? There seems to be good evidence that our aerobic systems are shot. Or is this not an anaerobic-system issue? Is it going to be about mitochodria?

BTW, if I'm slow to respond or unable, it's because I'm not very well today.

 

[Sasha]

These muscles are only likely to get too weak if you don't sit or stand enough e.g. if you are mainly bed bound,

What has done me damage is a series of infections that have put me in bed for longish stretches over the years, having muscle wastage as a result, and never being able to recover the lost muscle, so that each new infection has had a cumulative effect.

in theory it could be helped by several simple floor based bodyweight exercises e.g. planks, leg lifts etc., but I find these sorts of exercises much more damaging than I found weights,

I'm unable to do enough reps of these relatively low-weight movements to have any clinical benefit. Hence my interest in low-rep, high-weight, anaerobic stuff.

But @Valentijn's caution on this is well worth reading. I'm not recommending that anyone try this. I'm currently in no state to try it myself.

 

[Wonko]

@Sasha

Your basic assumption is wrong, bodyweight exercises are harder, involving more "weight" than what most people would consider a "heavy" free weight. For example with the plank, your core is holding a fair proportion of the weight of your trunk static, this is much more difficult than holding your entire upper body in place, so therefore the effective weight could be considered to be more than the weight of your upper body, arms and head.

 

[Sasha]

@Sasha

Your basic assumption is wrong, bodyweight exercises are harder, involving more "weight" than what most people would consider a "heavy" free weight. For example with the plank, your core is holding a fair proportion of the weight of your trunk static, this is much more difficult than holding your entire upper body in place, so therefore the effective weight could be considered to be more than the weight of your upper body, arms and head.

That's interesting - but it's still all relative. When I started exercising my arms, I (rashly) did it by attempting to lift my full bodyweight off the ground and I couldn't do it. After a few days of trying, I could, and then for longer and longer periods (until my wrist packed in, which was due to an old injury). So that was full bodyweight, not just upper-body, arms and head. Of course, what is a big weight will partly depend on what muscles are trying to lift it.

 

[Valentijn]

Maybe I'm unfamiliar with the science on sub-anaerobic exercise but from my lay perspective and the reading I've done, I don't know that it is an unlikely scenario. I just don't know, and I'd be very happy to hear about the evidence or rationale either way.

Basically there is a lot of evidence that exercise harms ME patients - large surveys, anecdotal evidence, and some circumstantial evidence regarding blood abnormalities after exertion. There is also a lot of evidence that every form of GET used in trials has failed so far - symptom responsive, rigid schedules, heart rate dependent, "relaxation" exercises, etc.

Based on all of that, I think we start with the same assumption about exercise for ME patients that we start with regarding drinking bleach for humans - there's a very strong prima facie argument for it being ineffective and harmful. So my view is that we need more than speculation to rule that it's potentially safe in some circumstance, since there's already a very strong case against it.

Is there evidence one way or the other about the status of our anaerobic systems? There seems to be good evidence that our aerobic systems are shot. Or is this not an anaerobic-system issue? Is it going to be about mitochodria?

There hasn't been any good evidence in favor of non-anaerobic exercise either. It's a lot of speculation, anecdotal evidence (mostly that it doesn't work), and the (unpublished?) report of a woman who was able to work up to being able to go up and down a flight of stairs to her apartment once in a while. And even that story explicitly states that gaining that functionality came at the expense of other activities.

I think what we know at this point is that our aerobic systems are indeed in a very poor state. But that doesn't mean that we can necessarily exercise our way around that either. And the limited evidence available suggests that we can't. Maybe that will be proven wrong, and we can somehow safely exercise - but I think that's as probable as holding onto the hope that there's an effective way to drink bleach. Even if it's theoretically possible, we really should wait for rigorous scientific research to establish that it's safe.

 

[Sasha]

Basically there is a lot of evidence that exercise harms ME patients - large surveys, anecdotal evidence, and some circumstantial evidence regarding blood abnormalities after exertion. There is also a lot of evidence that every form of GET used in trials has failed so far - symptom responsive, rigid schedules, heart rate dependent, "relaxation" exercises, etc.

Agreed, but wasn't that all aerobic?

Based on all of that, I think we start with the same assumption about exercise for ME patients that we start with regarding drinking bleach for humans - there's a very strong prima facie argument for it being ineffective and harmful.

Aerobic, yes. But anaerobic? I just don't find this bleach analogy helpful or accurate. Bleach is a toxin at any dose, isn't it? Whereas a different dose of exertion involves different systems, doesn't it?

So my view is that we need more than speculation to rule that it's potentially safe in some circumstance, since there's already a very strong case against it.

I agree that we need more than speculation to rule that it's potentially safe in some circumstances. I don't understand what you're basing your statement that there's a strong case against 'it' on, if by 'it' you mean both aerobic and anaerobic.

There hasn't been any good evidence in favor of non-anaerobic exercise either. It's a lot of speculation, anecdotal evidence (mostly that it doesn't work), and the (unpublished?) report of a woman who was able to work up to being able to go up and down a flight of stairs to her apartment once in a while. And even that story explicitly states that gaining that functionality came at the expense of other activities.

Is that really all there is in the literature? (An honest question - I don't know.)

I think what we know at this point is that our aerobic systems are indeed in a very poor state. But that doesn't mean that we can necessarily exercise our way around that either. And the limited evidence available suggests that we can't.

What evidence? (Again, I'm not familiar with this literature.)

Maybe that will be proven wrong, and we can somehow safely exercise - but I think that's as probable as holding onto the hope that there's an effective way to drink bleach. Even if it's theoretically possible, we really should wait for rigorous scientific research to establish that it's safe.

My own personal experience is that I was able to strengthen some muscles anaerobically without payback (apart from injury). I may have been very lucky to have been in a narrow window in which that was possible for me. If I'd kept going longer, maybe it would all have gone pear-shaped. I don't recommend that anyone else tries this - I agree that we need to be very cautious indeed about exertion and that many of us are so fragile that it will take very little to do us in. But haven't you yourself benefited from trying things for which there wasn't rigorous research evidence? Doesn't my experience suggest that your bleach analogy may be incorrect?

 

[ukxmrv]

OTOH, muscle wastage in and of itself can reach a point where it starts to affect function and it takes you more energy to do with weak muscles than what you could do with stronger ones.

Does it really or do PWME use more "something" to support larger muscles than they need for what they can do?

I didn't find it less tiring to do things when I had larger muscles.

 

[Wonko]

That's interesting - but it's still all relative. When I started exercising my arms, I (rashly) did it by attempting to lift my full bodyweight off the ground and I couldn't do it.

Not unless you were doing a headstand at the start it isn't (your full BW). Assuming you have normal arm length for height it's probably no more than a quarter bodyweight, using your arms in a way they were supposed to be used, i.e you probably couldn't hold that sort of weight out in front of you using just your arms. There's all sorts of stuff involving sine, cosine etc that could tell you exactly how much of a proportion of your bodyweight you were actually holding at full extension, but it's a long, long time since I did that sort of basic math.

ETA - as an example, given I've given some numbers below, I could stand, holding a 160 KG bar on my shoulders (so most of the weight ran through my core) for much, much longer than I could do a plank with no weight.

 

[Sasha]

Not unless you were doing a headstand at the start it isn't (your full BW). Assuming you have normal arm length for height it's probably no more than a quarter bodyweight, using your arms in a way they were supposed to be used, i.e you probably couldn't hold that sort of weight out in front of you using just your arms. There's all sorts of stuff involving sin, cosine etc that could tell you exactly how much of a proportion of your bodyweight you were actually holding at full extension, but it's a long, long time since I did that sort of basic math.

I had my feet off the floor between barres, supporting my full bodyweight on my hands (and therefore via my arms).

 

[Valentijn]

Aerobic, yes. But anaerobic? I just don't find this bleach analogy helpful or accurate. Bleach is a toxin at any dose, isn't it? Whereas a different dose of exertion involves different systems, doesn't it?

Bleach also kills things - so the speculation is that maybe there's a dose where it kills theoretical pathogens but doesn't harm the child who is ingesting it. But please bear in mind that this is an analogy, and being a completely identical situation isn't really the point

I don't understand what you're basing your statement that there's a strong case against 'it' on, if by 'it' you mean both aerobic and anaerobic.

It = exercise in general.

Is that really all there is in the literature? (An honest question - I don't know.)

As far as I know, yes. And it's something I follow pretty closely.

What evidence? (Again, I'm not familiar with this literature.)

Anecdotal evidence, primarily.

But haven't you yourself benefited from trying things for which there wasn't rigorous research evidence?

Those were things which had a plausible indication for use, and no indication of harm likely resulting. With so much evidence of exercise in general being harmful, and one specific subtype being harmful, I think any remaining subtypes of exercise should be considered harmful until proven otherwise.

Doesn't my experience suggest that your bleach analogy may be incorrect?

Your anecdote doesn't sound like it turned out very well. "Maybe it would've worked if it weren't for a supposedly unrelated problem" isn't exactly persuasive

 

[Wonko]

I had my feet off the floor between barres, supporting my full bodyweight on my hands (and therefore via my arms).

So using the same rough approach to trig that would make it at most 50% BW and not actually a press up at all, more of a plank (ish), but all this is beside the point.

If you're at all interested in relative strength levels (between types of exercise not between us) I couldn't do more than 10 of them when I was at my peak of training, at the same time I could deadlift 180 KG, squat around 160 KG, bench 92 KG, and over head press 52.5 KG - so more weight may not be, and probably isn't, the answer to your problems.

IMO if you can do that sort of "press up" strength isn't your problem, and it also suggests your core doesn't need working on either.