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

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.
 
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%.
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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).
 
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).

Theoretically it should be no different to any other circumstance that led to them losing muscle mass.

If they reach the stage where they're beginning to manage normal daily living activities, they'd build from there. They'd probably make quite rapid progress and then hit a frustrating plateau—that often seems to happen when people try to increase their activity.

I'd go back to heavy weights/low reps training first. Lack of mobility and early menopause put me at additional risk for osteoporosis, and too many elderly women fall, fracture a hip, and are never the same again. There are instructors who do weights work with older people regardless of whether they're 86, amputees, whatever. You're only too old or frail for it when you can't safely push against a resistance at all.

If PEM didn't flatten me afterwards I'd be doing it already. :blackeye:
 
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.
I honestly don't really see the problem. I suspect that they will just explain the basics of progressive overload and give you some kind of exercise program depending on your fitness. And they might also give some recommendations on diet (getting enough protein) etc.

I think especially for people that need to relearn/train how to walk it would be useful to know what exercises to do and how to progress in a safe way.

What kind of unscientific advice are you worried about?
 
I understand there are whole swathes of the NHS who are just jumping at the chance for us to regularly increase our activity, so we should be grand/s
 
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.
Indeed. And really the most important thing we need is the mindset and capability for staff to run a monitoring system that is curious and openminded to be taking down the different actual situations different peoples bodies might be in

I’ve lots of other comorbidities that are no doubt caused by the me/cfs pathology and not the ‘lazing round’ (I was bed bound a lot but still having to pull off more than most who weren’t at various points yet being given the label cfs makes these people disgustingly assume we are both unfit and do little and now that’s the cause of anything) but facts never got in their way and it’s unforgivable to stick a fake history on someone to fudge your suns which is what they do

So no I don’t trust them and I shouldn’t trust those who can’t step out if an abusive mindset just because it’s convenient to fudge truth to prop up their beliefs and the ideology of the subject and wish to turn on its heads what going on to treat the opposite of what is happening. It’s why I’m so ill and my life got written off to hell and no space for me to survive or exist. Which yes was them choosing that to my face knowing deep down somewhere their five mins of convenience mattered more than me getting five minutes of a right to life or existing. I do t won’t amoral people who don’t really give two hoots being given power over writing who I am anymore

I think unless we finally get some trustworthy people then some of us will still be in a dystopian hell. We will just get rewritten narratives on top of the distorted notes we can’t wipe from the last stuff. And a line up of people who want to do what they want to do predating on us again by making up our stories to lobby someone for money to ‘deal with us’

I have a horrible feeling I’m beyond saving and whilst I hold on for some cure there are many other things I have but am just being played by those systems because I’m on the don’t treat list and I’ll have gone from ‘too young to worry’ to ‘too old and missed out on family anyway’ to bother saving or helping excuse people do in their minds. I’m just someone who no one stood up for against the narcissism that really underlies all this and if you have an advocate who takes advantage of the sympathy for them if not correcting that I’m just a loser and ‘well done them for putting up with me’ instead of telling them to stop playing games and stick to the truth (so they had to offer less help because I actually would get support instead of managing out) who has been buried quite deliberately by day after day if these well practised quite vile but inbuilt now to many tactics. My life has been delay and lie about me.

I don’t know why the system got converted a few decades ago to a focus on making then keeping people like me far more ill than I ever needed to be by crushing me with these games but I can only conclude that those who went in (bps) and changed the whole of medicine to this had this objective for people like me. It wasn’t an accident. I can only guess there was money to be made or something else in making and trapping some in illness by the foot on neck bullying.

I know it’s not been about saving money or positive end goals. No system works as it does to this extent accidentally. It’s a new layer all the time to make life harder as you get closer to it. But about taking a service that used to get to the bottom of and making it into one that uses that as a carrot and power to destroy and play some and instead this ‘symptom focused’ or other buzzword Trojan horse term nonsense let destructive stuff be lobbied at said patients instead. And I watch it roll out more widely to other things and people and know they know (the ones at the top not the ones ‘just playing their part in the system’) it’s about making people sicker than decades ago by avoiding for no good reason other than to make them sicker providing access to basic diagnostics or even if tested that even being acknowledged to treat stuff on their record.

I’ve concluded from my position it’s bigger than just not helping sick people and leaving them but about these schemes creating an ongoing bunch of very ill people quite deliberately that never needed to be so ill. So I have to think why. And it must be to have us as some warning or underclass or just a source of income.

So no we can’t just assume these people become better people. Not with us. Those who played their part in punching down and didn’t come to a realisation at all the dating points we’ve had already have shown who they are when they are in those situations.

The thing I think will be transformative - and I know this because it’s just little tiny windows of where I got a tiny respite and was treated as normal person might for a no here or there why I’m still alive at all (and it’s like a parting of the Red Sea level of shocking when you realise it is in people gifts to just stop it with the years of games and ‘do’) - is that I have hope it might lead to a change of who is in charge of us and a protective layer in who advocates for us when those of the system do their knee jerk sneer of trying to ‘manage out’ us and lie. It’s that finally having someone saying ‘no’

It’s taking us out of that bucket of untrained abuse. I’d say my health was initially damaged by me/cfs but I hold the purveyors of all this architecture of ‘functional’ abusive stuff multiplied its impact by 25. And they took my opportunities. And they put me in this position of a pawn to be sucked dry for what I could be used for ‘in name’ and just look at the size of these kingdoms and edicts built in the name of keeping people like me bullied and from access to sane care of any type including support and including leaving me open to bullying in every aspect of day to day life.

I’m so ill I can’t hide from these people (no matter how ill it makes me or how much human right to support I’d turn down to do that it was safer) and am just a sitting duck. It’s what I’ve spent my whole adult life scrabbling to try and avoid . Unless these people change to instead the type of people I see for other illnesses I can see just how they will pull on the thread of those things still left for those who don’t just recover overnight - because we’ve tested how they react when their gravy train had to maybe change with the new nice guidelines. It will be a double-down on those people they see as ‘entitled to use’ who are still left as a smaller number under their capture.
 
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