Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

[sebaaa]

In the title and poll, I'm not referring to ME/CFS or PEM improving from exercise. Clearly, it doesn't happen. I'm referring to muscle improving, as in a localized effect.

That's a good question, @Yann04. Even as a borderline moderate/severe person, I can't do what most people would call 'exercise'. I also voted no.

Perhaps a more refined poll would tell us more, including different severity levels.

Or perhaps it's really talking about exertion, so for me the question might be: does walking around my house a few times a day lead to me being able to walk further or faster. To which the answer is a definite no.

And for someone with very severe ME it might ask whether doing a small movement of a limb in bed every day enable you to do it more easily, or more often.

I guess I should've been more specific with the definitions. By "exercise," I mean activity that increases capacity to exert. The goal should be to move past the baseline, hence the recover AND improve part. Where the baseline is, should not matter. An example would be weightlifting or running, and improving at those activities, which implies recovery of course. You should improve regardless of the intent of the exercise. That's how it should work for a healthy person.

What I'm getting at is that if muscular recovery is impaired then what causes that? But I guess that's like asking what causes ME/CFS? Or what causes PEM?

 

[Trish]

From reading about others' experiences, I think a few people can increase strength in some muscles by very slow and careful focused exercises using specific muscle groups, provided the exertion involved doesn't exceed their 'energy envelope'. So they might be able to improve their hand grip strength, by gradual grip exercises at a level that doesn't trigger PEM.

But I don't know of anyone with a definite diagnosis of ME/CFS including delayed PEM, who can improve stamina by repeatedly pushing the envelope. It seems that people who try this find they can, for example, walk a little further each week for a while, until suddenly they find they can't and that not only have they gone backwards a bit, they may even be worse off than when they started the gradual increase process.

This is what makes GET so hazardous. We can cut back to our mythical 'baseline', gradually increase each week for a while, then hit a wall and go backwards. I suspect PACE physios on the GET arm did their best to make the increments so small and the 'baseline' so low during the trial months that most didn't hit the wall until after the trial. Clinics usually only see pwME for a few weeks, so hitting the wall happens after the pwME has been discharged as 'improved' by the clinic. And most clinics don't collect follow up data.

 

[Mij]

The cumulative effect will eventually get you. Don't kid yourself.

 

[poetinsf]

Depending on what you mean by "recover" and "improve". People do recover after minor PEMs that last several days. And they do improve in terms of muscle mass even if the exercise doesn't improve the exertion tolerance. Your QOL could go to hell though, if you try to build up your muscle or improve conditioning.

There is nothing wrong with normal functioning of muscles or aerobics, or how they respond to exercise. It's just that we keel over with PEM after exertion.

 

[Trish]

There is nothing wrong with normal functioning of muscles or aerobics, or how they respond to exercise. It's just that we keel over with PEM after exertion.

Not my experience. Rapid fatiguablity, pain, increased symptoms during and after exertion. Exertion intolerance. My muscles do not function normally.
PEM is a delayed worsening of all symptoms additional to this.

 

[Sean]

The cumulative effect will eventually get you. Don't kid yourself.

This.

 

[poetinsf]

Not my experience. Rapid fatiguablity, pain, increased symptoms during and after exertion. Exertion intolerance. My muscles do not function normally.
PEM is a delayed worsening of all symptoms additional to this.

There is no proof that muscle functioning is responsible for your symptoms. Most patients can push through when they are not in PEM. It's just that they'll pay for it if they do. The fact that patients can perform as well as similarly deconditioned controls on the first day of the 2 day CPET test is the proof. And there is no proof even for the next-day PEM that it is a muscle problem.

Going back to the original question though, your muscle mass/tone will definitely will improve if you somehow manage to exercise regularly. It's just that you can't exercise regularly enough because of PEM. You exercise, get knocked out several days, lose whatever you gained from exercise, and then you have to start all over again. Patients on the mild end of the spectrum can, and some do manage to improve their muscles and conditioning because they have enough headroom to exercise a bit without triggering PEM. In fact, that is probably the kind of improvement they claim in exercise studies. They take patients in mild/moderate end, put them through pace within their limit for 16 weeks, report 15% improvement on 6MWT, and then claim GET works. That of course is false since the conditioning improvement won't continue past the ceiling. Exercise does not raise the ceiling; it only improves conditioning within the ceiling.

Edit: added the last sentence

 

[Mij]

What turns it off though? I stay within my energy limits to prevent delayed PEM, but sometimes I go through periods when my leg muscles cause gait abnormalities, they feel rubbery/wobbly, or stiff, and I can't move forward with a smooth gait. I feel like they will give out so I stay close to base. This feels very different from PEM muscle fatigue but I feel it is all related in some form.

 

[bobbler]

There is no proof that muscle functioning is responsible for your symptoms. Most patients can push through when they are not in PEM. It's just that they'll pay for it if they do. The fact that patients can perform as well as similarly deconditioned controls on the first day of the 2 day CPET test is the proof. And there is no proof even for the next-day PEM that it is a muscle problem.

Going back to the original question though, your muscle mass/tone will definitely will improve if you somehow manage to exercise regularly. It's just that you can't exercise regularly enough because of PEM. You exercise, get knocked out several days, lose whatever you gained from exercise, and then you have to start all over again. Patients on the mild end of the spectrum can, and some do manage to improve their muscles and conditioning because they have enough headroom to exercise a bit without triggering PEM. In fact, that is probably the kind of improvement they claim in exercise studies. They take patients in mild/moderate end, put them through pace within their limit for 16 weeks, report 15% improvement on 6MWT, and then claim GET works. That of course is false since the conditioning improvement won't continue past the ceiling. Exercise does not raise the ceiling; it only improves conditioning within the ceiling.

Edit: added the last sentence

Worse than that (not confusing past the ceiling) it wasn’t a new ceiling at all, just people who are early on shifting more and more out so they do their increase but now haven’t been to the supermarket for a month when they used to be able to spend an hour there

.. and then if you keep it up at that limit I’d say you crash back to where or worse than before, because actually you can’t avoid the supermarket forever and had cut that and any superfluous showers out.

but actually as it happens you also look blinking wrecked and wonder why 9/10 claim they don’t notice or actually don’t then 1 friend or indeed acquaintance will suddenly be shocked because it is indeed obvious. And then it becomes obvious to all and they assume you’ve just gone randomly mad instead of watching you be exhausted dragging round doing way more than you can in front of them for the last 6months feeling as if you are doing the old gag where you pretend you are going downstairs you are so exhausted.

maybe it isn’t muscles but I’ve had enough years where I’ve been forced continually to push through for very long periods of time and it wrecked my calf muscles slowly and ends up with my body being wrecked. So it’s not just the signal ‘to not do it’ because enough of us over rode it to test that one out whether we wanted to or not. And it doesn’t end well.

 

[TiredSam]

I voted yes, because I can walk slowly for 1-2 hours without PEM, so I recover from that walk. If I do it often enough whilst staying in my envelope (every few days) I feel generally better. My ME doesn't improve, but the rest of me feels better for moving, stretching and getting some fresh air. That's the extent of the exercise that I can do, and I generally feel better for it, but it doesn't change my ME situation one bit.

 

[poetinsf]

If you don't mind PEM, your muscle mass will increase with exercise. Back in 2010, I temporarily moved to a new city. I did 2x4 pushups and/or 2x4 chair-dips every other day for a year. When the time came to move out, the landlord commented how much better I looked compared to when I moved in. The only problem was that I was in PEM nearly constantly. And the PEM baseline did not improve. A heavy price to pay for an improved physique. I stopped regular muscle exercise since then and I was all skin and bones in my 2018 picture.

Edit: oops, I thought this was a new thread. I guess COVID wiped out the memory.