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

Sasha

Sasha

Senior Member (Voting Rights)
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?
 
Maybe I’m naive but I imagine that if a treatment would come along, I’d start by simply sitting in my bed, then walking a bit, showering - things like that. I am thinking that gently easing into normal activities of daily living would be great for my body. I don’t know if I’d need a physiontherapist for that. As long as I don’t get PEM, there would not be a problem.
 
I have been thinking about this- I was very surprised after several months of severe/very severe ME that when I felt well enough to play the guitar again, the muscles generally were ok unless I tried to bend strings or play fast, and what stopped me was that I very quickly got exercise intolerance symptoms and developed PEM later on.

But when I try to play now, 4 years later, all sorts of muscles and tendons in my arms and shoulders are straining and pulling in funny little ways because they have wasted so much.

I wonder if there were hypothetically an effective treatment that returned me to something like heath, how I would safely recondition myself to playing without risking tendon injury. I am prepared for the fact there may be some degree of permanent atrophy and I may not be doing my Jimmy Page impersonation again even with treatment (although I live in hope).

I also walk with a very unusual gait now, and I perhaps might need assitance training myself to walk more normally again.

But as was said above, I don't trust physios as far as I can throw them now.

Also, in this hypothetical scenario us bedbound folks should be studied by the muscle researchers as we rehabilitate ourselves because it would be pretty unprecidented as far as I know. Would be interesting to see how the body behaves.
 
I’ve spoken to a world class sports coach about this. The advice was to just take it slow and to not do more than the body can «absorb». I explained pacing to him, and he said that was pretty much what they did for long term injuries or illness.

So let the improvement happen before you try to increase.

Ironically, I think the far more important part will be the psychosocial aspects. I’ve had to unlearn how to be human, and I suspects it’s going to take some work to learn how to function in society again.

I think we might be able to learn a thing or two from prisoners that get released from long sentences.

Then there’s the trauma, lack of trust, etc. I’m fairly certain I’m going to reach out to my old therapist because I know she believes me.
 
V.R.T. said:
Also, in this hypothetical scenario us bedbound folks should be studied by the muscle researchers as we rehabilitate ourselves because it would be pretty unprecidented as far as I know. Would be interesting to see how the body behaves.
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That's a very interesting idea. I'd be interested to know what others think about this. Is there a potentially interesting project there?
 
I think a physio could be helpful to guide you on which exercises to do, especially if you're unable to walk. I don't necessariliy trust them to set the pace though, mostly because I can't imagine not getting PEM lol. I think some of us will need to slowly build up that confidence. And even for our body it's probably best to build it up gently.

But I also don't think most people would absolutely need a physio. I'm guessing most people that have spontaneously recovered did so without one, but I don't know that for sure. But I think it can be useful to get specific help from them. Rehabilitation is something physios work on very often.

Besides that diet will be important: protein (muscles), calcium (bones) etc.

I hope to take my sweet time to get phsyically strong and healthy before ever thinking of working. I think most of us would benefit greatly from taking a long time to really focus our bodies. Cardio and strenght training, proper nutrition and sleep.

Besides that as @Utsikt says more challenging might even be the psychosocial adjustments. Where do you stand in life? What can you do now? What do you want to do? Some of us might feel really lost for a while. Also things like building social and professional skills and becoming independent again.
 
Utsikt said:
Ironically, I think the far more important part will be the psychosocial aspects. I’ve had to unlearn how to be human, and I suspects it’s going to take some work to learn how to function in society again.

I think we might be able to learn a thing or two from prisoners that get released from long sentences.
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Agreed. Especially with the fact that pacing at the severe end is essentially unlearning how to be human.
 
I imagine the time it will take to get to where we'd like to be physically will be frustrating, and people will try to do too much too soon. It's easy to forget when you're re-learning things that you may as well stop once your focus has gone. You're not improving or learning, you're just getting tired and frustrated.

I had to give up swimming for a decade and a half, and it took two and a half years to get my line in the water back and four to develop reasonable fitness. I was doing it while still having ME/CFS, but in people over 50 I don't think being recovered would necessarily shortcut that timeline much.

I'd probably be able to do three sessions a week instead of two, but instinctively it feels as if I wouldn't knock off more than six months to arrive at roughly the same level of strength, control and endurance.

If the gap's been long enough, you have to re-train your muscles and rewire your brain.
 
In older people, I think that rehab is going to be harder, because it's harder to build muscle mass and those with osteoporosis are going to need to be careful. Many of us will last remember a health body from decades ago and it's going to be hard to manage expectations.
 
The recovery of physical strength and stamina will continue for years. People might begin with short walks and more household work, then begin leaving the house and eventually rediscover the joy of outdoor activities and sports.

People might have posture problems due to lying or sitting a lot and having weak muscles. These might need some treatment.

The hardest will be the emotional pain that will surface once one gets out of the isolation and is exposed to the world again. All the pain of that which never was and that which was missed.

Relearning social skills and functioning in society will also take time. This could take more time than recovering physical function.

It took me about 1.5 years to recover the ability to feel good while socialising. In some ways this was harder than recovering physical strength and stamina.
 
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We can easily look at similar examples, even for very severe cases, such as for prolonged immobility and coma. How do people rehabilitate from months and years of coma? I would assume it's a rather straightforward process to return to normal function. I'm pretty sure that in 90%+ of cases there is zero need to do anything, people will just naturally go for it without a hitch. And I'm probably underestimating it, could easily be 99%.

There are examples from, IIRC, the encephalitis lethargica cases that followed the Spanish flu pandemic, when someone found a treatment that worked in a manner of hours, but unfortunately did not solve the problem, only worked temporarily. Some of them had essentially not moved for years, and many started dancing.

Frankly all this deconditioning is half fear-mongering, and half a poor excuse to justify their professional failures. If the problem is entirely lifted, zero PEM, just the effects of years of extreme sedentarity, the vast majority are back to almost normal in 2-4 weeks, running, dancing and doing most of the things they want to do. Not running long, not fit by any stretch, in fact, badly out of shape, but capable of doing a normal routine for their age, and accounting for other health problems they may have.

Most of the problems will be more about aging, when it's a lot harder to return to normal. For that it may require some support, but looking at how inept the rehabilitation industry is with us, I can't see them credibly having a useful role. It would probably take them far longer to learn to stop doing most of the mistakes they will commit at first than it would take for almost everyone to get back to normal.

The hardest part by far will actually be to reach everyone with the treatments. To build the clinics and expertise that can deliver them, to find the patients, especially those who have become completely socially isolated, to get them to where the clinics are, to fund the programs that will pay for the treatments, and so on. About 99% of that work happens before someone gets the treatment. The rest will mostly be a breeze.

Well, the biological anyway. The socioeconomic, though, whew. Some of us will have never worked a day in their lives, not even finished school. Even a 10 year gap on a resume is a hard thing to overcome. I wish I only had a 10 year gap. Some people will have worked in careers that no longer exist, or would need total retraining. Maybe they wouldn't want to do that again, and would need new training.

This will likely be far more expensive and difficult to deal with, and a lot won't quite be able to make it through. Especially those who find themselves able to function again, now elderly, and with no one at all in their lives. No spouse, no family, no friends, everyone gone. That is likely something we will have to do ourselves, build communities so that we can rebuild meaningful lives with the support of the only people who truly get it.
 
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For us elderly people, I think any reconditioning would need to follow the same sort of path as recommended for elderly people who are weak and prone to falls. As far as I know this involves things like seated leg and arm exercises, and walking, if necessary with a walker or a fixed bar to hold onto for balance, and recumbant stretching and strengthening exercises. I think it would come naturally as we start to do more.

I wouldn't expect to need help from a physio, but I am still able to walk around bit in my house now. Someone who has been bedridden for years would probably benefit from guidance on things like how to get out of bed safely and use of equipment to help with balance, and suggested stretching and strengthening exercises.

When I has 6 months bedridden aged 27 with what may have been glandular fever, once I recovered I just started doing normal stuff again. There was no suggestion back then in the 1970's of needing rehabilitation or physio. I went from my legs being so weak I had to crawl up the stairs, to going for long walks with no problems once I recovered from the illness.
 
On a tangentially related note, for those of us like me who suspect a prodromal phase, it would be interesting to see what symptoms remain if any. I.e. does the insomnia, DPDR and panic attack type episodes I began to experience at 19 go away with a really effective treatment, indicating it was a prodromal form of ME, or does it remain indicating it was caused by another issue?
 
A relative needed a hip replacement but ended up waiting years due to waiting lists, covid, more lists etc. They couldn't do their normal activities at all. They went from sofa to bed and the painkillers really zonked them out.

After the operation they did have a period of recovery but within a month they were dancing again.
 
I am not expecting any serious issues for the vast majority of patients, who I think will simply start getting on with what is left of their lives.

The biggest problem is going to be stuff like recovering financially, and dealing the often decades long extreme stress and personal loss many of us have been through. Stuff we can never get back. That will be vastly more difficult and is where the real long term damage will be.
 
OrganicChilli said:
Don't scare me like that :oops: My prodromal phase symptom cost me my career. It's the main thing that needs to go away.
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My prodromal phase symptoms (insomnia/sleep reversal and DPDR/panic) cost me any chance of a career even before I even started out in life so I entirely empathise.

I'm hoping it's not the case but we will just have to wait and hope and see.
 
I've been doing a little bit of pilates as I start to feel better. I have definitely had to learn to sit up again and develop the core strength to do so. I've also been doing foot exercises for ballet dancers. It seems like my feet and more core have gotten the weakest and need the most gentle rehab. I do keep PEMing myself because my reach excedes my grasp, but there is a little strength training I can do. I use my heartrate monitor to pace and find I can do horizontal things like pilates and that weight lifting is much easier than walking.
 
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