has anyone really benefited ie cured by exercise?

[lansbergen]

oh! Do you know if that person posting on this thread or is there a separate one I am missing?.

There is a seprate thread. It is moderated so the worst insults are removed

 

[Artstu]

I've always done as much as I could with energy I have at that given moment but its never increased my energy etc permanently when I can take a short walk or whatever..

How many months/years did you exercise for?

 

[Valentijn]

Recovery from ME has to come first. Then exercise might be part of rehabilitation. But at that point the illness and its symptoms are gone.

Deconditioning is NOT a symptom of ME - it is a side effect of the inactivity required to avoid symptom exacerbation. Hence the exercise is in no way treating ME symptoms or aiding in recovery. It's simply something that becomes possible when everything else is working properly.

 

[Keela Too]

I always think that trying to make a person with ME exercise more, is like trying to make someone on a very limited budget spend more.

Both want very much to be ABLE to do what is being asked, but know that the consequences of doing so will come at a very high interest rate.... and that they personally will be left with the penalties not their "advisor"!!

Both will naturally respond in the desired way as soon as their personal budgets allow.

Both can also "appear" better off than they really are on an isolated special occasion.
But splashing out occasionally should NOT be used as an indicator of their ongoing situation.

Exercise - like spending - will increase naturally as soon as budget allows.

 

[Artstu]

Recovery from ME has to come first. Then exercise might be part of rehabilitation. But at that point the illness and its symptoms are gone.

With no experience of using exercise as a way of improving your ME you're not in a position to say that with any certainty.

 

[manna]

i had one of the fish machines" that rocks your ankles from side to side...sends waves through your body and losens your ankles and really gets your legs limbered up,,,lying on your back too. the equivalent, without the gravity aspect on bones, of doing a run without the exertion, really cleans out the lyphatics too, very powerfull and common for it to be too powerfull fort folk with me/cfs. one lady claimed a recovery with that and mind/body...thats 3rd hand. its a bit like my gut isn't strong enough for healthy legs. those machines loosen up 6 meridians that run through each ankle and when that rising energy hits my solar plexus its like being winded. i really think exercise tolerance is the last thing you'll get back.

first of all get the organs working. you can keep your lymph active without aerobic exercises. if my voice breaks a few octaves thats one thing that means i can do more. hormones first. if aerobic exercise is part of your recovery its at least well to experiment with, none, little or different kinds of exercises other than aerobic. i can't do tai chi at the momenmt so a bit limited. id try that if i could.. its easy for a fatigued body to get too comfy but really its never held me back like exercise does. i wish i could live somewhere where its easier to be outside. thats important, for me any way.

ive employed exercise many times but it hasn't worked for me as of yet, the way i was doing it..other than tai chi though that isn't "aerobic".

 

[Artstu]

Exercise - like spending - will increase naturally as soon as budget allows.

Ah but will it? if someone isn't exercising how will they know when the time has come for them to do more?

 

[Valentijn]

With no experience of using exercise as a way of improving your ME you're not in a position to say that with any certainty.

Actually I was at a CBT/GET clinic for about 9 months. The exercise aspect had no impact, and my general condition declined.

And there is something even more persuasive than personal experience - scientific research. It has been shown repeatedly, by the CBT/GET fanboys themselves, that GET results in no objective improvement in physical condition for ME/CFS patients.

 

[manna]

Are but will it? if someone isn't exercising how will they know when the time has come for them to do more?

their digestion is functioning propelry, their voice breaks, you sleep deeply and restoratively through the night, food melts in your mouth, all signs of what used to be normal but was forgotten since its been so long you felt like that, returns. thats how id know, those are the kind of signs i look for. if you can get to that point with aerobic exercise, feeling normal, then so be it, if you can't then at some point its worth giving it up as it may be the hindering factor. it is for me.

 

[Artstu]

Actually I was at a CBT/GET clinic for about 9 months. The exercise aspect had no impact, and my general condition declined.

And there is something even more persuasive than personal experience - scientific research. It has been shown repeatedly, by the CBT/GET fanboys themselves, that GET results in no objective improvement in physical condition for ME/CFS patients.

I'm no fan of GET either. I also saw a decline whilst engaging in a GET programme. For me exercise was simply going for a 20 minute walk as and when I could, 20 minutes was my limit for years, where most would have given up, I didn't, I was enjoying the walk, and it had to be helping me in some way.

Building that base fitness for me has now allowed me to start benefiting from it, I've now introduced assisted cycling, and I continue to become stronger and fitter, with less illness down time.

 

[Keela Too]

Are but will it? if someone isn't exercising how will they know when the time has come for them to do more?

I don't know about you, but most people exert up to their limit sometimes, just like with spending....
(Unless they are very well off... & ME patients are not "well off" in terms of their energy levels.)

Yes,I like to have a little "in the bank" for occasional indulgences, but most of the time I am concentrating on reining in energy expenditure to match my very limited energy budget!

As soon as I can relax my constraints and have no consequences, will obviously be the time I can explore doing more....

Until then I will continue to test my boundaries only very very cautiously.

I find it a little condescending to suggest that we might not be aware of our limits just because we aren't doing much by other peoples' standards!

 

[Keela Too]

I'm no fan of GET either. I also saw a decline whilst engaging in a GET programme. For me exercise was simply going for a 20 minute walk as and when I could, 20 minutes was my limit for years, where most would have given up, I didn't, I was enjoying the walk, and it had to be helping me in some way.

Building that base fitness for me has now allowed me to start benefiting from it, I've now introduced assisted cycling, and I continue to become stronger and fitter, with less illness down time.

May I tactfully suggest that your condition was improving and so this allowed you to do more.... NOT the other way around. xx

 

[Keela Too]

As a side note - I have only recently managed to stabilise my condition. I have added this link as it should help folk to understand that I have in no way given in to this illness, but rather that I have tried to find ways to work around it without causing further decline along the way.

http://abilityforagility.blogspot.co.uk/2014/05/why-do-i-use-wheels.html

 

[ukxmrv]

It just shows how different we all are. in the early days I did 2 exercise programs. The first was a classic GET where one increased exercise slowly over time. In those days it was a increase activity regardless of how one feels and this was under the guise of the psych/physio lobby. Then my second was after they discovered (and with another hospital) how much damage they caused to patients and was an increase exercise with limits of how one reacted. Both were a disaster for me, the first was much worse than the second.

Then even after that, whenever I had a "good" (i.e. feeling different than normal but still nothing near well) I would always test my limits my slow exercise. I tried tai chi, yoga, lifting small weights, walking, slow swimming and other things. It was the same each time. There was a ceiling and when I reached that, bang, it was an immediate return to being largely bedbound again.

Most long term ME patients I know are like this and I've known people personally and met them at local groups who have been sick like me for decades. In my experience this "feeling better" raises enormous hope and longing in the severely and long term sick. I'd say from my first hand experience of knowing long term, acute onset, viral-type ME survivors that this would be typical.

Very frustrating. I tell myself that if I ever feel "better" again, the next time, I'll not do this. I'll try something different, an activity that is not exercise related, liked try to learn a new skill.

 

[Artstu]

May I tactfully suggest that your condition was improving and so this allowed you to do more.... NOT the other way around. xx

I ponder that thought often. It's a difficult one to answer. I believe the exercise has lead to the improvement.

Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in exercise but remain ill.

 

[Artstu]

There was a ceiling and when I reached that, bang, it was an immediate return to being largely bedbound again.

That ceiling is very important. Keep below it for a very long time, with very carefully timed little steps to push it a bit higher. I spent 4 years banging my head on that ceiling thinking I would never ever push through it. It's moved now, but I'm very aware it could start coming back down at any time.

 

[Keela Too]

I ponder that thought often. It's a difficult one to answer. I believe the exercise has lead to the improvement.

Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in exercise but remain ill.

Perhaps they don't participate in exercise BECAUSE they remain quite ill?

I remain quite ill and very physically limited. Is that because I don't participate in exercise? Or is it because I am still ill?

 

[Keela Too]

That ceiling is very important. Keep below it for a very long time, with very carefully timed little steps to push it a bit higher. I spent 4 years banging my head on that ceiling thinking I would never ever push through it. It's moved now, but I'm very aware it could start coming back down at any time.

And there you have it.... you couldn't move the ceiling by trying to push through. It only moved once it was ready to move. xx

I am only ill 2 years now. I know where my ceiling is, and <sweary words> it's very low!

 

[ukxmrv]

I ponder that thought often. It's a difficult one to answer. I believe the exercise has lead to the improvement.

Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in exercise but remain ill.

They do though - some of them, I know long term ME patients from the 80's and some from epidemics who have fought to keep up their dancing or their yoga or even care and try and ride their horses. They do what they can when they can and then crash and go back to bedbound for years. Then slowly crawl out of that hell and resume their activities. One woman has strong core muscles from her yoga but still looks like the living dead and when she is well enough to resume her yoga she can't do other activities. There are ME patients with a determination not to give up their activities and who have the choice i.e. they have the money, the time and are not bedbound.

It may be that these old patients are making themselves worse and the illness would have got better if they had tried ART instead. I've always found that ART (aggressive rest therapy) is the most consistent way of building strength and functioning for me).

But not everyone is the same and you have found something that works for you. The people who have been ill for a long time (i.e. since the 80's) are the survivors of the early GET, GE and CBT programs in many cases. We have had a long time to experiment with exercise and been encouraged to do it by professionals. We are the ones who have been sharing our bad experience with exercise and what we have done to test this over decades.

 

[Artstu]

Perhaps they don't participate in exercise BECAUSE they remain quite ill?

I remain quite ill and very physically limited. Is that because I don't participate in exercise? Or is it because I am still ill?

regardless of how ill we are, we can all do a little bit can't we? I started out walking to the garden gate and back.