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

There was no mention that the 'highly functional' athlete in the video experienced PEM (yet), but the tests indicated she got worse after six months. A lower functioning M.E patient would only be able to do (stretching?) much less and I'm wondering if that would lower their function over time as well.

I'm able to power walk (I enjoy it) twice a week for an hour without PEM if I manage my energy throughout the week.
The problem is that I have no way of knowing whether this is a good thing for M.E. I'm not exercising because I think it helps improve M.E, I do it for overall health and enjoy getting out in nature.

How do we know?

 

I agree @Mij - we don't.

I tried to keep active and functionally able, but I now wonder if even the gentle yoga was too much and if that's why I am now severely affected.

 

I have the same question, @Mij. I don't know either. Wondered about it lots of times...

 

The key for me has been tapping into the mitochondria boosting high intensity training, I did a bit of fairly high effort short duration sessions on my bicycle turbo-trainer, and instead of getting worse I was actually improving. I use hills now when I go for a walk.


This article explains the effect on healthy people, and whilst our mitochondria isn't working as it should there is the same potential to improve its function. https://www.medicalnewstoday.com/articles/316229.php?sr

 

@ArtStu . . . I don't see how this applies to us.

How do you know we have the same potential to improve? We still don't understand the mechanism of PEM and why the symptoms intensify when we increase our activities.

 

I don't know for sure of course, perhaps I'm unique, perhaps I have a different illness, perhaps I'm special, perhaps we're all the same. All I can say for certain is that it works for me and the science confirms what I thought must be happening with the Mitochondria. Although I did think it may be increasing the numbers of them rather than the performance of them individually.

Edit to add, Perhaps we have a far greater potential to increase Mitochondria function than healthy people, if ours are at say 10% function perhaps we can increase that to 30-40% function, a 300 to 400% increase. still vastly below a healthy persons of course.

 

I think this is the right thread to ponder a question that's been bothering me for a while. It's this narrative I keep hearing that aerobic exercise is definitely bad for us but anaerobic "should be ok".

I find this concept difficult to get my head around. I'll try and elaborate although fog is dense nowadays.

If one assumes anaerobic exercise is predominantly muscle building exercise for strength, and that muscle fibre size and density can only be increased by lifting weights to exhaustion (as oppose to improving tone, joint flexibility and circulation by not), then surely strength only comes by damaging and then repairing the muscle fibres?

Bear with me...

So if you do tear your muscle fibres and call upon your body to repair them, this repair process over the next 24-48hrs requires energy to be utilised ...transporting metabolites, producing proteins and whatnot for cell growth and repair Etc? This is above and beyond your "normal" ATP demand.

So if you didn't use "aerobic respiration ATP" when you did the exercise you almost certainly will when the damaged muscle cells are being repaired later? Aerobic respiration is after all our bodies default for when we aren't required to do something sudden and strenuous. Anaerobic respiration (or fermentation) is only really used as a back up generator, or that's how I seem to remember it.

So following that logic, I would expect an ATP deficit to be created by strength training after the exercise. (I have no idea as to scale for this.... It may be small, but cell creation and repair takes a lot of energy from memory?)

So I don't think it really matters whether it's aerobic or anaerobic respiration used ...you still end up with a problem if you work beyond your energy envelope and all unnecessary exercise is potentially a problem unless managed within your pacing envelope.

That's my working theory anyway ...feel free to rip it to shreds/point out the flaws etc. This is more a question for comment rather than a statement of fact.

 

Can tell you from experience that anaerobic exercise can be as exhausting or even more exhausting than aerobic. I've been to the gym till about 3/4 years, maybe even more after I got sick. But the sense of depletion I felt after finishing a work-out.... I don't recommend it to anyone. Offcourse I kept pushing on, cause that's what the bastards at Het Roessingh told me to do, all to my detriment.

 

@arewenearlythereyet, I guess you explained why I get sore muscles if I do "too much".

This is just my personal experience, and I can't explain it in detail on a metabolic level.
I don't train my muscles till exhaustion anymore. That will most certainly lead to terrible muscle sores. Furthermore, it doesn't seem to lead to muscle gain (i.e. both - training till exhaustion and training not till exhaustion). My hope is to avoid too much muscle tissue loss, i.e. to keep some of the muscles I were able to build up. Don't know if that is realistic; haven't done an impedance measurement for a while.

I understood it that way as you explain - muscle fiber "damage" leads to the body "repairing" and - hopefully increasing - muscle tissue. Your body needs building material, e.g. protein, and enough rest. If you train your muscle again too early, it will lead to muscle loss in the long run, and if you retrain too late it will lead to slow muscle gain (or non at all, depends on the training level).

I think people with ME don't want any muscle damage.

Being above the anaerobic threshold doesn't mean necessarily to train till exhaustion or to train with maximal power. If you remain slightly above the anaerobic threshold you can keep the workload for up to 120min, depending on the training level and on health status. So I can only guess that's the level we should aim at, if at all (having vanNess' talk in my mind).

After getting ill with ME I kept my training level (I didn't know I was ill). During that time my CK level was highly elevated. (Later CK-MB was determined, too, which was at the upper limit, but normal.) I guess there was increased muscle tissue damage with inadequate repairing. Just a guess. Today CK is normal. I could imagine that the CK level could indicate, too, whether too much was done. (This is no knowledge, just a guess.)