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

I know this is similar to another thread by @rvallee but I think the poll warrants its own thread.

I don't think I can properly recover from exercise. I feel like I never improve. It doesn’t matter if it’s swimming, running or pushups and pullups. I feel the lactic acid, and I always seem to move back to the baseline but never beyond. This has been the case for the last 10 years of my ME/CFS. I don’t know if this is connected to PEM or not.

If people with ME/CFS were able to recover from exercise why would GET be problematic? It seems like you could just push through the PEM symptoms as long as your muscle recovers. To me the fact that GET is harmful means that there has to be something fundamentally wrong with muscle in ME/CFS. I think the cases of permanent worsening of symptoms from GET are related to this.

Hanson’s urine metabolomics study might have something to do with this “inability to recover” issue.

Edit: 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.

Also, the title and poll refers to muscle recovering and improving. A localized effect. I'm not referring to the disease itself improving from exercise.

 

I'm able to exercise within my energy limits without delayed PEM, but that took years to figure out. I don't feel as though it's making me worse long term, but can't say for sure based on how I feel.

I've never been able to increase my exercise workout in 25 years.

 

As someone who has been slowly and steadily deteriorating for 14 years I voted ”no”.

I think the effects of not being able to recover are very obvious once you become severe. Something as simple as a shower sitting down can permanently lower the baseline. To me that’s evidence that something is very wrong with the recovery process.

 

Recovery from exercise seemed to be normal for me throughout my 20+ years of ME. I think improvement from exercise is fairly normal too. Back when I got PEM, common muscle usage didn't trigger PEM, even if it was hours of strenuous activity, but a few minutes of unaccustomed activity (washing a window overhead) would trigger PEM.

 

No, the harm could be unrelated to the muscles. There are plenty of other possibilities. For example, muscle usage involves certain neurons firing, supported in that activity by glia, so it could be those brain cells triggering PEM or long-term crashing. Another example would be the cytokines released due to muscle cell damage, causing long-term changes in immune activity. Maybe the increased oxygen levels or waste products triggers some long-term changes. I haven't seen anything that clearly supports problems with the muscle cells in ME.

 

Perhaps I shouldn’t have voted in this poll?

As a very severe person the answer is obviously no. But maybe you aim to ask only mild people?

 

If we were able to exercise without deteriorating or harm, we’d know because there would be people with MECFS in the paralympics, running the London Marathon etc. Because if you can increase your exercise you would increase back to your previous levels. Even I could do a 10k and was considering a half marathon before getting sick, and I wasn’t exactly a fitness freak, but I’ve never got past about 2k jogging during remission and that was a short-lived phase.

 

I voted no. A few years ago I had a good summer and managed to go for slow walks of up an hour, with rests, and managed to go a little longer without stopping and a little faster, a little more often, without increasing PEM. Not reliably - it had to be a good day. But I did crash, for whatever reason, and haven’t yet been able to get back to that level of activity.

 

The limiting factor is my underlying ME.

In general my answer is ‘no’, but there are windows when my underlying ME is remitting when my answer would be ‘yes’ within the limits of any improvement in my underlying condition.

 

I think there is a potential difficulty for me in the description of exercise. Are we talking about aerobic exercise like doing specific "exercise" like gym, cycling, running vs a relaxed walk rather than a power walk etc or strenuous activity? eg heavy housework like vacuuming or gardening

I had a stress fracture in my lower back last year and the only treatment was physiotherapy. She assessed my back, understood I needed a low intensity, recumbent, muscle strengthening program and I did that over several months at home on a mat. I never got out of breath or got a particularly high heart rate. It was staggered over time and progress from simple movements (and not done in pain) to resistance bands and then 1kg hand weights. I was in PEM at the time ( the pain and poor sleep had triggered that) but had no choice (but I do not think it worsened the PEM because in the end the pain subsided and my sleep improved). I was considerably stronger in my core. eg I couldn't do a squat but now can. I have continued these exercises as I never want to be as weak as I was and there is a risk it could happen again, on top of the ME is was pretty grim but instructive that I can do this type of non-aerobic exercise. So I do think I can recover from recumbent exercises.

About 6 months later, I had a time of forced overactivity as we had a major leak in our house due to adverse weather and I had to move things very quickly, pretty heavy things, very frequently. I had cognitive PEM as well as I suddenly had to chuck out a lot of stuff and decide what to save and deal with the insurance company and emotional stress as well. I felt fitter, so aerobically I probably was but I was very mindful I was pushing through PEM for several weeks (and so wanted to properly rest and pace) and there would be major payback! - took months of rest to get back to baseline. So I did "recover" but some aspects of my ME are worse but that could be age. (eg more sleep problems due to menopause and generally as we age).

I do think these prolonged crashes over the last 30 years have nibbled away at my baseline, slowly making me more severe (now housebound). I have never been one for the gym but did like some uphill walks and cycling which I could do when was mild-moderate without inducing PEM. Was on my feet most of the day with work, worked long hours and weekends so never had the time or energy. I think this is what annoys me when people say, you just need to exercise - activities of daily living are/is my exercise! And now I am unable to do strenuous activity as it induces PEM and takes several days to recover

 

In the US, current stroke treatment requires that you perform exercise for your brain to develop new pathways to compensate for the injury caused by the stroke. When I had my stroke in 2022, I was told to practice getting out of my living room chair into my wheelchair five times in a row every day. At the beginning, I was able to do this quite easily; but as time went on, my ability to do this exercise diminished to the point that I was lucky to be able to do two reps. I now struggle to do even one transfer from LR chair to wheelchair. So I'm a definite "no."

 

Until the last couple of years I have always done some sort of exercise in addition to the usual house and garden activity. Years ago it was hiking and aerobics classes then it became uphill walking, then no hills. Now I save my energy for the basic essentials.
Apart from less overall stiffness, never, ever has activity/exercise at any level made me feel better or invigorated like it has for other people I know. I always just feel like a buggered zombie for the days or weeks it takes to recover.

 

When I had an improvement from severe to moderate some years ago (after private treatment; no help whatsoever from the NHS aside from being offered CBT, which I declined), I found I could go out for short gentle walks for the first time in years (prior to illness, I had regularly gone for long brisk walks). So my husband and I went for Sunday walks along a nearby canal and finding I could manage a 15-minute walk, we decided to try 20 minutes next time, and increase a bit more each walk and see if I could restore something approaching my pre-illness level of stamina and strength, which I thought/hoped was finally possible.

Instead, after increasing to 25 minutes one week, the next time I found I was starting to feel like I was going to keel over after 20 minutes, so we went back to 20 minutes. And then next time, had to reduce it to 15 minutes when I started to feel like I was going to collapse at that point. And then the next time I could only manage 10. We gave up after that because it was getting too depressing.

Welp, good first-hand proof that incremental increases/'GET' does NOT work...

(So, I voted No!)

 

Definitions are important here, I think. If by exercise you mean any activity that takes me beyond my sustainable exertion limit then, to answer the poll question, I might have very short term temporary benefit from it but very soon I will no longer gain any benefit and start to deteriorate.

If by exercise you mean activity that is below my sustainable exertion limit then I can recover and benefit from it but I'm sure a healthy person would not recognise my limited stretches and attempts to keep my leg strength from deteriorating further as exercise.

And to answer the question in the thread title, yes I think it is a core component of ME/CFS.

 

I am a bit unclear as to what is being asked in the title.

As far as I know there are virtually no illnesses that improve with exercise and certainly exercise does not make you recover from an illness. Being unfit is not an illness.

Most people with ME/CFS learn not to do exercise that worsens their symptoms. So hopefully most people with ME/CFS do not do 'exercises' for the sake of it.

The important question seems to be whether exercising leads to some long term physiological change that cannot be reversed by rest or at least not for a long period. That seems to be the case but it doesn't seem to be simply a problem with muscle. After exertion people have more orthostatic intolerance, more sensitivity to stimuli, and so on. If it were purely a muscle problem like in muscular dystrophy none of this would occur.

So I don't think worsening with exercise is particularly indicative of a muscle problem.

 

Feeling invigorated after power walking or exercise was both a positive and negative outcome in my case during the earlier years of ME. Recovering after 3 days from delayed PEM was what fooled me into believing it was a good thing to keep going at that pace.

I didn't realize the damaging ramifications until a few years later and how it was lowering my cognitive energy with every delayed PEM episode which was not an issue with ME for me earlier on in the illness. I never went back to my normal state.

 

IN the long run I don't seem to be able to improve my exercise load, but in the short run, sometimes. I've at times increased how far I can walk, increased how much I can lift, increased how far I ride, etc. Later I crash and it all goes backwards. And its all gone backwards on net over the last 10 years, but I can gain and do gain fitness during certain odd periods.

I think this is what being mild is: I'm less affected by me/cfs than a person who is moderate or severe. But not as healthy as a normal person.