If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

[Peter T]

For younger people I suspect as long as they are sensible reconditioning will be fairly straight forward. Indeed when I had periods of varying degrees of remission in the past I was always surprised how easy it was increasing physical activity even after years of being housebound.

But now approaching 70, I am less optimistic about my prognosis even if we have a successful treatment. I am developing other age related conditions that will presumably continue beyond any treatment. Dependent on what any treatment is addressing, will some symptoms remain? If a treatment addresses say immune issues, will cognitive impairment remain? Will secondary issues such as food intolerances or migraines or IBS continue?

For me premorbid functioning was as a very active and fit 30 something, but even complete remission for an unfit deconditioned 70 year old with additional conditions will be very very different.

 

[Kitty]

On a personal level I'd be interested to find out whether I recovered the power in my legs.

I'm not sure it's entirely ME/CFS related, because it only affects my upper legs and doesn't change with PEM or having a better day. Might be wrong, though.

At the moment my vision of a post-treatment me is still needing a wheelchair because of that, but all the same being able to pick up my swim training, getting involved in more wildlife surveying, and doing more music. I might also be able to work on my postage-stamp sized garden a bit.

If it turned out I didn't need the wheelchair, I'd be able to travel outside mainland Britain too. I'm never going to want go far, I like my own fireside too much, but it'd be good to visit some of the music festivals in Ireland.

I wouldn't envisage a lot changing, but it should be easier to do the things I most want to. I'd be better at them without the severe brain fog too, and I wouldn't have to spend 85% of my waking hours recovering from stuff I did in the other 15%.

 

[Murph]

If we were properly treated I don't think continuing to distrust physios would be a rational approach! They've always been good at treating people who are healthy just unfit. Problem is that's not us. In your scneario it would be though.

That said I've had remissions and it's just not a hard question. I sometimes discover i'm having a remission by the fact I seem to be doing more and more little by little.

 

[Sasha]

If we were properly treated I don't think continuing to distrust physios would be a rational approach! They've always been good at treating people who are healthy just unfit. Problem is that's not us. In your scneario it would be though.

We wouldn't be just unfit, we'd have wasted muscles, weakened bones, our bodies would have altered themselves to adapt to our slumped seated or recumbent posture, etc. etc. We wouldn't just be your average couch potato.

And are they good at treating people who are healthy but just unfit? I doubt even that, now that their general lack of understanding of how to assess evidence from RCTs has been thoroughly exposed.

 

[bobbler]

We wouldn't be just unfit, we'd have wasted muscles, weakened bones, our bodies would have altered themselves to adapt to our slumped seated or recumbent posture, etc. etc. We wouldn't just be your average couch potato.

And are they good at treating people who are healthy but just unfit? I doubt even that, now that their general lack of understanding of how to assess evidence from RCTs has been thoroughly exposed.

Agree on that last bit.

I’m impressed by physiosforME but sadly I think much of the rest of the profession has let itself slip to somewhere most healthy people I know won’t touch them based on direct experiences they’ve had and that includes those in allied professions.

They just allow themselves to be used as gophers in various games played to make people jump through hoops that aren’t designed for them and don’t check they do good, just come from a bad attitude to human beings and/ or other agendas and initiatives.

So I’d be incredibly cautious about trusting one. And it’s a bit like finding a good hairdresser where even if they seem ok the first few times that doesn’t guarantee you won’t get a disaster hairdo once you’ve got loyal and they are back in a rush or distracted.

Many of them many years ago just converted to sessions without much hands on and most of it being them at a computer asking if you did your homework so gone are the hands on type things being something that can be assumed if that’s what is needed.

I don’t quite now what they are going to do to sort themselves

 

[Utsikt]

If we were properly treated I don't think continuing to distrust physios would be a rational approach! They've always been good at treating people who are healthy just unfit. Problem is that's not us. In your scneario it would be though.

Have they been good at that, though? The research methods in physio seems to be all over the place, and I’ve received so much contradicting advice from physios over the years.

 

[EndME]

And are they good at treating people who are healthy but just unfit?

What kind of "treatment" are you looking for, if the only thing occuring is people being unfit? All they have to do is get as fit as they wish and the way there will be quite individual with similar problems occurring that occur in the general population (joint pain, back pain etc) for which there is no general treatment. Some will have no issues other will have some specific issues, maybe some specific problems might arise in more often in deconditioned people relating to certain areas, back, joints and similar but that probably isn't too different too how things are in the average population and where as has been said the advice can be very mixed, sometimes helpful, sometimes useless.

Have they been good at that, though? The research methods in physio seems to be all over the place, and I’ve received so much contradicting advice from physios over the years.

Yes, but contradictory advice is probably irrelevant if there isn't a problem. One will tell you that you have to do Yoga, the next will tell you to work on your posture, the next will give you specific back strengthing exercises, the other will try some messages, the next one will recommend heat therapy, another will tell you to take certain supplements etc. But that all seems pretty irrelevant when all you have to do is as much as you like and if you'd like to do a lot then get there sensibly (don't start off by running a marathon or lifting heavy weights).

I see little reason why anyone should specifically a priori get involved.

 

[poetinsf]

If the happy day comes along and we get restored to better health, how should we try to get our bodies stronger and fitter again? Who should we look to for guidance and support? Is my scepticism about physios unjustified, in that new context?

I don't think you need to worry about getting back into shape. You'd naturally move/exercise more once you have an effective treatment. We are the bunch that constantly get into PEM sickness because we do more than we should, after all.

I remember cramping all over after walking in my boots from my car to the ticket booth back in 2019. I thought I was in a reasonable condition under the circumstance. Little did I know most of my muscles were severely deconditioned after 12 years of wallowing in ME/CFS. I quickly got back in the skiing shape though. All without physical therapy or therapist.

 

[Utsikt]

Yes, but contradictory advice is probably irrelevant if there isn't a problem. One will tell you that you have to do Yoga, the next will tell you to work on your posture, the next will give you specific back strengthing exercises, the other will try some messages, the next one will recommend heat therapy, another will tell you to take certain supplements etc. But that all seems pretty irrelevant when all you have to do is as much as you like and if you'd like to do a lot then get there sensibly (don't start off by running a marathon or lifting heavy weights).

I’d say it’s relevant if they overstate the evidence or just give unscientific advice. That’s an issue in itself, regardless of the consequences for any individual.

And it also makes it completely rational to continue to distrust physios, which is the opposite of what Murph argued.

 

[duncan]

If I could triage my physical rehabilitation, I'd start with my brain. Unfortunately, I am not optimistic all the brain problems will resolve with whatever treatment. I fear for some pwME, there may be permanent damage, and cognitive problems might remain, even if the lion's share of symptoms retreat.

Don't get me wrong - we should still try rebuild our other attributes if feasible, but if you can't return "me" along with the rest with my body (or at least a facsimile of "me"), then the treatment is pretty much just an exercise.

 

[TigerLilea]

Many PwME have been largely immobile for decades, with wasted muscles, osteopenia/osteoporosis, and poor cardiovascular fitness. Many of us are now elderly. If an effective treatment comes along, we're going to want to try to recondition our bodies, but physiotherapy as a profession has disgraced itself as far as ME/CFS is concerned (@PhysiosforME notwithstanding!). I would find it hard to trust a random physio now, and I'm far from sure that what they do has a sound evidence base. Plus, I doubt that many physiotherapists have much experience in working with people in the state that many of us are in.

If the happy day comes along and we get restored to better health, how should we try to get our bodies stronger and fitter again? Who should we look to for guidance and support? Is my scepticism about physios unjustified, in that new context?

The US Military several years ago did a study on deconditioning. They had a couple of men completely bedbound for a couple of months. After the study ended they were unable to support their own weight when standing. Within two weeks of the study ending they were able to go about their normal lives once again. I don't think that it would be any different for people with ME/CFS. It might take a bit longer, but each day I would imagine the people that were most affected by this would slowly see improvement in their physical abilities.

 

[Sasha]

The US Military several years ago did a study on deconditioning. They had a couple of men completely bedbound for a couple of months. After the study ended they were unable to support their own weight when standing. Within two weeks of the study ending they were able to go about their normal lives once again. I don't think that it would be any different for people with ME/CFS. It might take a bit longer, but each day I would imagine the people that were most affected by this would slowly see improvement in their physical abilities.

That's very interesting! But I've read that the longer you're immobile, the longer it takes to recondition. I don't know if that relationship plateaus but I do also worry that reconditioning might be particularly difficult for older PwME (because older people generally find it harder to put on muscle mass).