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.