has anyone really benefited ie cured by exercise?

[jann1033]

Just saw a new Facebook page by CFIDS society supposed to be for those who benefited from gradually increased exercise which was as far as I can tell is just GET without the acronym.
From my own experience that hasn't worked, 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. Just relates to how I feel in that point in time.
I thought GET was understood to be worthless>detrimental so wondering if the few who claimed it helped them substantcially as in recovery are trolls.

 

[Esther12]

You would think that there would have to be some people dumped within the CFS diagnosis who could be cured by some sort of graded exercise. But the evidence seems to indicate it's, at best, a tiny proportion. I've not found it at all helpful, despite trying many different approaches, and think that the spin used to over-promote GET to CFS patients is really quite nasty.

 

[taniaaust1]

Just saw a new Facebook page by CFIDS society supposed to be for those who benefited from gradually increased exercise which was as far as I can tell is just GET without the acronym.
From my own experience that hasn't worked, 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. Just relates to how I feel in that point in time.
I thought GET was understood to be worthless>detrimental so wondering if the few who claimed it helped them substantcially as in recovery are trolls.

I dont think we should be thinking of the people it does help as trolls. Its simply a case of we probably just have DIFFERENT illnesses (this is so why I hate ME being lumped with CFS or just CF people). They could of been ones who just had chronic fatigue and depression (exercise really can help depression) or overweight or whatever. Exercise DOES help many other illnesses and things.

When up to 70% of people (according to one ME specialist) , have been wrongly diagnosed, we can expect exercise to be helping some.

 

[SOC]

I doubt they benefited much from exercise if they had ME. PEM is always an obstacle to much exercise.

I can't speak for other PWME, but I am as active as I can safely be. I do it by using my measured AT and HR monitoring. As it is I'm not yet able to do all the necessary activities of daily living. I add more as I improve, but I'm not there. Exercising for the sake of exercising and using up energy I'm currently using to function would be stupid.

Perhaps if there are PWME who are not doing as much as they can without risking their health, those people might benefit from being encouraged to be more active. Still, I'd advise activities of daily living over sit-ups and leg-lifts.

Many of us would probably benefit from gentle stretching and range of motion exercises if activity is very limited otherwise.

There are also some exercises that can help a bit with OI. PWME might benefit from those under some circumstances.

It might be true that PWME who have improved enough that they are in the mild category -- managing to work and perform all activities of daily living -- might benefit from working on physical conditioning if it's done appropriately.

I believe some ME knowledgeable exercise physiologists are working on training the low level anaerobic metabolism to work more efficiently through appropriate exercise, but that "exercise" could also be accomplished through activities of daily living. Mostly they don't want us sitting around not moving IF we can be moving more. Perhaps they have found that some patients will do "exercises" before they'll engage in more functional activities, so it's easier to assign exercises than to teach people how to do just a little more at a time....?

Let's not forget that many people diagnosed with "CFS" or "CFS/ME" don't have what we consider ME. They often don't have true PEM, just exercise intolerance, fatigue, or only OI. Those people would benefit from exercise, as do people with fibromyalgia (only). All those people may think they have ME/CFS and correctly say they benefit from exercise, but they're actually misdiagnosed.

 

[Beyond]

If you lack energy/health to exercise, pushing yourself to do it is doomed to make you sicker. Ignorant people will say that you need to exercise to be energetic but is the other way around, especially when you are physically ill.

When you are HEALTHY exercise can and will stimulate your body and make you feel better. But if you begin already diseased, tired, achy... it can only burn you further. This should be obvious, I have checked it personally when I have tried these years to start "getting fit" again in the periods of increased wellness. It just leads to losing that slight improvement I had in that period.

 

[stridor]

I am benefiting from exercise. I started mfolate and mB12 in July 2012 and added the LCF and adnB12 along the way. Exercising prematurely is a good way to tear up DNA. I kept trying light exercise and "listened" closely to what my body was telling me. I can do some light weights for 20 minutes without triggering a fatigue event.
I believe that graduated exercise can be an important part of recovery but we have to wait until the appropriate time.

 

[GhostGum]

I have to a limited extent, but it was about 10 years before I could, as my system started to improve and even after three years of gradual improvement exercise still does not feel right and my body still does not react normally to it, I dream of the day when a ride or a hit of golf goes smoothly and I feel really good from it.

Of course if I just needed GET it would not have taken me 3 years to have decent improvement, I imagine normal reconditioning, with my motivation (which is through the roof, through the clouds and into the stratosphere) and a normal functioning body would be 6-12 months? I should be cured at this point.

I put it down more to the couple of years before hand of diet and supplementation which continues and is in constant refinement, initially just got to the point where I improved enough and felt like I could start doing a little activity. The reconditioning after 10 years of inactivity really makes a difference, less circulation issues, improved cardiovascular system and of course general well being; glimpses of normal activity after that hell is like pure ecstasy.

I just added more methylation orientated supplements in the past couple of months as well, including very regular B12, so I am hoping it is all a done deal in the next 6-12 months.

As stridor says it is likely an important part of recovery but at the appropriate time, it is very disheartening though to think for those sufferers on the more severe end of the scale that this appropriate time could be a pipe dream without effective treatment

 

[Esther12]

I think that there's a big difference from being able to find some benefit from certain levels of exercise, and people being 'cured' by it. I would have thought that almost all people would find that they get some benefit from a certain level of activity greater than 'none' - but that this is quite different to people being cured by exercise.

On a personal level, I just quite enjoy some exercises (sometimes), and definitely feel like it's best to do what I feel like, and that this leads to some exercise. (tbh - we're talking about mild body weight stuff... before I got ill I don't think I'd have considered that to be any sort of 'exercise' - which was seen as requiring at least 30 minutes of heavy sweating).

 

[justy]

Hi, @jann1033 - I wonder if you could post a link so that we can also see what exactly you have seen?

I can only agree wholeheartedly with what the other posters have all said.

Thanks
Justy

 

[Mij]

I am benefiting from exercise. I started mfolate and mB12 in July 2012 and added the LCF and adnB12 along the way. Exercising prematurely is a good way to tear up DNA. I kept trying light exercise and "listened" closely to what my body was telling me. I can do some light weights for 20 minutes without triggering a fatigue event.
I believe that graduated exercise can be an important part of recovery but we have to wait until the appropriate time.

My opinion is that we shouldn't use recovery and exercise in the same sentence, it gives the impression that if you can exercise you are moving towards recovery. I've reached a level of improvement where I can do low impact exercise, but it is NOT a part of recovery. I can get severe PEM if I overdo just a few more minutes. This is contre productive.

 

[jann1033]

I guess I mostly question this as I had gotten to the point of reasonable activity(About12 years after I started aggressive resting and stopped the crash cycle of the first 10 years so 20 + yrs into CFS), if I kept my energy level within its boundaries . Then occasionally I could do more, like an easy slow short (1mile) flat surfaced walk with rests along the way without PEM. But as soon as my body had numerable insults( 3 surgeries in 18 months, moving, stressful family situations) that all went out the window and I relapsed, with my worst symptoms, beyond "normal" PEM for me. So what may have appeared to be "recovery" was at best remission. ME/CFS seems to always be just under the surface at my best times.
Guess that's why I hear "recovery" as a temporary condition for actual CFS but that's just my experience
I guestioned "trolls" on the other site since my highly subjective view of the initial post seemed like "come here and post where those big bad nonexercisers can't get you" lol but also got me wondering about my experience vs others... I'm never sure what I want the answer to be, since guess "other's" experiences don't really effect my own

 

[justy]

Hi Jann, your post above re your experience with M.E, exercise and remission is EXACTLY the same as mine. You are not alone. I do not believe in a cure, I believe in remission.

I had a long remission where I could exercise quite a reasonable amount and worked part time as a gardener, but measles and a minor op put paid to that and for the past 6 years have been worse than the first few years of the illness and now have horrific PEM from even very short walks or stretching!

 

[jann1033]

While I'm sure there is a way to link, I can't figure it out. Its on the CFIDS association of America facebook page, just a few lists from the top https://m.facebook.com/CFIDSAssn not sure if that's the actual link or not

 

[GracieJ]

If exercise helped someone "recover" from illness, my guess would be it was not ME. That runs counter to what is understood about mitochondrial dysfunction, muscle abnormalities, brain abnormalities, OI, etc.

I was one that tried over and over and over to get an exercise regime into my life at the level of a "normal" person. It meant a lot of PEM and false starts and self-accusations of lack of discipline and focus. :thumbdown:

Over time, I found that if I walked SLOWLY and nothing else, I could build up very, very gradually - two to five minutes more a week - to a two-mile walk. More than that and I would crash again. Now I understand why the slowness worked. It kept my heart rate down.

Times of stress, the walk has to be eliminated. It may be months before I resume, and then I have to rebuild again from very short walks.

I definitely do better when walking like this several times a week, and do better coping with everything. But it is not a cure. It is a lovely part of life I can add back here and there with a lot of hard work. Function has to be on the high end, at least a 7, for me to be able to do this.

My symptoms are well described by the ICC guidelines, if anyone is wondering. My story is punctuated by classic episodes of ME crashes, putting me at a 2-3 on the functioning scale. I am at a 7 and working, but struggle with keeping it all together and avoiding another crash. Keeping physical exertion well-paced is a huge piece.

 

[SOC]

What I'm hearing in this thread is that as people begin to recover (maybe "approach remission" would be a better phrase), they are more able to exercise than they were previously. That is not surprising. It also doesn't sound like a cause-effect relationship in the direction exercise -> recovery. IF there is a cause-effect relationship it seems to be recovery -> exercise.

When my daughter was in remission, she was able to do more physically (walk, climb stairs, hike in the mountains) than she was able to previously. Exercise did not help her recover, the ability to exercise was the consequence of improving her health with antivirals, thyroid meds, and OI treatment.

As I very slowly improve, I am able to do more than I could previously. I can't walk nearly a mile -- 100 meters is still borderline -- but I can work part-time and do a little light housework which was completely out of the question 2 years ago. Again, I'm not able to do more because I exercised. I am able to do more because I'm aggressively treating the illness which gives me more capability.

I think we need to be careful when patients talk about exercise benefiting their health to be sure we understand what they mean by exercise and what their level of functioning is. It is not surprising that a PWME functioning at an activity level of 6-10 benefits from some light (not aerobic) exercise.

We probably also need to know if they are choosing to trade off function for traditional exercise. That's a choice some people can and will make, but many of us who don't have a support system can't afford to exercise at the expense of cooking our own meals, buying our own groceries, or earning a living.

It would be nice to know, as a PWME, at what level of health patients are beginning to find benefit from traditional exercise. It might also help to know what degree of PEM these patients had previously and now. And last, but not least, what kind of exercise these patients started with and how they increased. It would give the rest of us some idea at what point it's wise to try to do a little traditional exercise and what type to start with.

 

[lansbergen]

IF there is a cause-effect relationship it seems to be recovery -> exercise.

Right

We probably also need to know if they are choosing to trade off function for traditional exercise. That's a choice some people can and will make, but many of us who don't have a support system can't afford to exercise at the expense of cooking our own meals, buying our own groceries, or earning a living.

Even if I could affort it I wouldn't. I want to be self-reliant as much as possible.

 

[SOC]

Even if I could affort it I wouldn't. I want to be self-reliant as much as possible.

Me, too. It's the only thing that makes sense to me.

 

[Esther12]

We probably also need to know if they are choosing to trade off function for traditional exercise. That's a choice some people can and will make, but many of us who don't have a support system can't afford to exercise at the expense of cooking our own meals, buying our own groceries, or earning a living.

Yes - and also, having the resources available to adapt to any problems that result from over-doing it. The extent to which I'm able to 'risk' certain activities depends upon the extent to which I have a cushion of resources available for if I respond unusually poorly and it leads to me being less able to do other more basic things for a period of time. Even without a support system, extra money makes it easier to adapt to these things, and being really broke makes everything more difficult.

 

[taniaaust1]

I have to a limited extent, but it was about 10 years before I could, as my system started to improve and even after three years of gradual improvement exercise still does not feel right and my body still does not react normally to it, I dream of the day when a ride or a hit of golf goes smoothly and I feel really good from it.

Of course if I just needed GET it would not have taken me 3 years to have decent improvement, I imagine normal reconditioning, with my motivation (which is through the roof, through the clouds and into the stratosphere) and a normal functioning body would be 6-12 months? I should be cured at this point.

I put it down more to the couple of years before hand of diet and supplementation which continues and is in constant refinement, initially just got to the point where I improved enough and felt like I could start doing a little activity. The reconditioning after 10 years of inactivity really makes a difference, less circulation issues, improved cardiovascular system and of course general well being; glimpses of normal activity after that hell is like pure ecstasy.

I just added more methylation orientated supplements in the past couple of months as well, including very regular B12, so I am hoping it is all a done deal in the next 6-12 months.

As stridor says it is likely an important part of recovery but at the appropriate time, it is very disheartening though to think for those sufferers on the more severe end of the scale that this appropriate time could be a pipe dream without effective treatment

If you watch something like The Biggest Looser, one thing it makes one aware of is just how fast healthy people improve fitness wise with exercise. You get people who can hardly walk.. actually able to run quite a distance in only 6 weeks. I tried to start own exercise program one time when that TV series started and the contestants.. hugely obese and even old some of them compaired to me.. were able to outdo me after only two weeks!. They kept on improving, I just couldnt improve. From that I truely think if it was simply deconditioning that is our issue.. we'd improve quite rapidly with exercise, it wouldnt take no where near even 6mths.

Quite possibly there would of been quite a lot of improvement anyway even without exercise if someone is on the mend to the point in which they can now exercise at times. (I found when I had my full remission for a while, that the weller I got, the more I was able to do anyway.. that included exercise, , my improvement thou was completely unrelated to exercise).

 

[taniaaust1]

What I'm hearing in this thread is that as people begin to recover (maybe "approach remission" would be a better phrase), they are more able to exercise than they were previously. That is not surprising. It also doesn't sound like a cause-effect relationship in the direction exercise -> recovery. IF there is a cause-effect relationship it seems to be recovery -> exercise.

When my daughter was in remission, she was able to do more physically (walk, climb stairs, hike in the mountains) than she was able to previously. Exercise did not help her recover, the ability to exercise was the consequence of improving her health with antivirals, thyroid meds, and OI treatment.

I think you just said there what I was trying to say better then I did.
............

At what point is one ready to try to introduce "exercise" , I think that point is when it actually feels "right" for the person to be doing it and can do it without problems. I dont think anyone else can judge this. I dont think there are any clear points to indicate when this right point is. It may not even necessarily do much either (except just help to maintain health as long as one isnt overdoing) even when one is at an okay point to introduce it.

I was at one point exercising for 2 hrs per day.. at that point with the way I was choosing to exercise, it wasnt harming me.. but on the other hand after 6-12 weeks of doing this.. I didnt seem to be any fitter at all either. I couldnt do anything more really then when I started!!! 2-3 mths of regular exerise and I could only run for 8-15? seconds more at a time (I cant remember the exact amount I improved now but it was crap all... what kind of improvement is that!

At that rate of an improvement.. imagine how much improvement (well how little that would be with a year of regular exercise) . Its not even worth caling THAT an increase of fitness!. It was soooo very discouraging to be putting that time into exercise with what I could say was almost no results at all. It was a complete waste of my time (2hrs every day or two) .. and effort, I could of been doing something which was useful to me with that time.

I think we should forget about exercise as a cure for ME or even to improve with ME. (its like telling a cancer patient or a MS person that they can improve their actual illness by exercise). I know some will disagree with this but from my experiences in all stages with this illness, I say exercise just doesnt 'treat" ME..even if one is going into recovery.