New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

But can we actually know that at the moment? Do we have the evidence to know what is actually safe?

 

We don't know. But many with very mild ME will choose to exercise - like the person mentioned in the video who trained for a multisport event, ignored the advice to take enough rest days and crashed themselves.

So no, we don't know how much, if any, exercise is safe but we do have pretty good evidence, including from the CPETs, of what isn't safe and that's exercising again before having recovered from the previous bout. Hence my surmising that some people with very mild ME who choose to exercise could benefit from a reminder to at least pace their exercise.

 

Near the beginning she says exercise improves immune function in non ME patients, do we all agree on this? Is there any evidence for it?

At about 22:00 she says function is restored after 3 days and implies it's safe to exercise at that point. I have to strongly disagree with this based on personal experience. She must have been testing very mild ME patients.

 

No no no. I would have been considered "mild" in 2000. I was functioning at 80-90% as long as I got adequate rest in between activities. Some days I had to rest longer for whatever reason. I was not "restored" 3 days after exercise, yes I felt better, but I could not exercise again after 3 days. They need to stop making these assumptions based on test results.

 

She says she rates her participants mild to moderate. I'd be very surprised if anyone with moderate ME would recover from PEM within 72 hours. But I guess if PEM is a cascade of processes going wrong where one thing leads to another leads to another leads to another... then it's hypothetically conceivable that there could be a recovery from the sort of function CPETs measure within 72 hours while all the downstream symptoms are still ongoing.

I can certainly see a risk of the usual suspects willfully misinterpreting the 72 hour findings to conclude that everybody with ME should exercise every 3 days irrespective of symptoms (which I'm pretty sure is not what Lynette Hodges is implying).

I don't have any evidence to hand but I think that's widely accepted - with the notable exception of overtraining in athletes.

 

@Ravn

My main issue is putting pwME into categories of 'mild, moderate and severe' and expecting a different outcomes.

 

What we call exercise amounts to what was normal activity for the first quarter million years of our evolution. It’s no surprise that it goes well with people in normal health. Study after study shows that people who can exercise to any reasonable extent benefit from it in myriad ways.

To my mind what those studies call exercise it is simply offsetting an unnatural state of lack of motion and lack of effort, a torpor which is only been possible for average people in the last 100 years or so.

We have a very unusual illness, and other than people with post polio syndrome I know of no others who are more easily harmed that helped by exercise.
I still hope there’s some amount and method of exercise that I can do which is a net benefit. I still have nothing to go on other than try it and see how I fare after the inevitable post crash. Even then, I don’t get a permanent answer because what worked this year can be harmful next year, or the reverse.

 

Any type of exercise that causes PEM is not suitable. After many years, I'm still not confident that power walking (which I can do for an hour) is ok even though it doesn't trigger PEM. It can take years to realize with proper before and after testing (Workwell Foundation) to actually see the results.

 

When you move respiration is anaerobic for the first 2 minutes then aerobic respiration which is damaged for us begins. it might have been Workwell but i read that keeping things to this 2 minutes can help you do more without payback.

I have been doing this when I can and it seems to work. At the very least stopping as soon as I feel the first signs of becoming tired or whatever this feeling is called - I can't remember normal after 52 years- is working well for me as I am managing to do some art work which makes me happy even in short bursts.

 

This is not exactly true.

There is always a balance, regardless of time. On a physiological level, the balance depends on the pattern of motor unit recruitment, which is in turn primarily determined by intensity of the force output and the gradient of oxygen available to the muscle fibres. On a molecular level, the balance depends on the kinetics of each of the processes relative to the rate of ATP energy demand (including availability of oxygen/glucose etc). Anaerobic metabolism is favoured during short, high intensity bursts of activity, simply because it is faster at producing ATP.

Maximal force (~8 seconds) will consuming the energy already stored in ATP and creatine phosphate in the cell. Maximal force for ~30-40 seconds will also utilise stored glycogen in an anerobic manner as well as a modest proportion produced through aerobic metabolism, since some of the pyruvate produced through glycolysis will be fed into the citric acid cycle (and in turn, oxidative phosphorylation), at the same time.
Maximal force for these time frames is much higher than can be maintained for longer time frames. Past this point, force will drop off and aerobic (ox-phos) metabolism will contribute a larger proportion of the energy. After hours (the exact amount depends on intensity), the glycogen stores in the muscle will be depleted and the individual will "hit the wall" unless they stop or slow down to a level of activity that can be maintained through replenishing glucose via circulation and through fatty acid metabolism.

But we are far from maximal force when doing the dishes, or walking around the block, hence when doing these activities, a much greater proportion will be due to aerobic (ox-phos) metabolism.

 

You understand these things much better than I do! I was using something I read. I watched the Workwell video on energy management and they say 30 seconds but it is always possible I am misunderstanding.

Biology is so complex and my brain is not what it was.

 

I suspect it was the Workwell video that was misleading. Maximal exertion may be predominantly not-aerobic for 30 seconds, but unless you are an athlete who does weight lifting, this kind of activity isn't normal.

 

I miss my ATP. Big, beautiful buckets of ATP, being faster, stronger ...
I could wait for bionics, but I’m short the $6 Million.

 

The Ancients would like a word.

“No citizen has a right to be an amateur in the matter of physical training. (…) What a disgrace it is for a man to grow old without ever seeing the beauty and strength of which his body is capable.”​

- Socrates