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has anyone really benefited ie cured by exercise?

Artstu

Senior Member
Messages
279
Location
UK
@Artstu

We ALL need to know this, including Dr.Klimas, Sol, Dr. Vaness etc on what exactly you've been working on for 6 yrs of exercise to improve your exercise capabilities so that you can exercise on a bike for days in a row. . You can not "work on" PEM, it just happens and once it starts you can not stop it.

I quite agree. They should conduct some trials. You have no proof that it isn't possible to work on reducing the effects of PEM, because no one has conducted a trial.
 

Undisclosed

Senior Member
Messages
10,157
This thread is being closed temporarily for moderation purposes.

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Undisclosed

Senior Member
Messages
10,157
This thread has been re-opened.

Please avoid making negative personal comments about each other and stick to addressing the content.

Thank you and carry on with the debate.

Kina :)
 

jann1033

Senior Member
Messages
176
Yes they have. Watch this video it is very good.

Very good video. I think the OK stuff(forget what he called it now, not aerobic or anaerobic) is basically what I did by myself that helped except not "exercise" per say, just being as active as I could. Didn't cure me but I didn't feel as sick ie flu like and the better I felt the more I could do as long as I stayed in my envelope( most times, if I got a cold or something, no telling what was going to happen).

Before that(pseudo pacing) pem led to flare led to relapse if it continued. This last flare, first bad one since I did that with the pacing like stuff, was different though. Not much of the flu like stuff but more neuro stuff I used to have only after i had a relapse for a while. And more sleepiness than usual in pem so like an intense flare/ but not total relaspe. I don't know if the pacing changed that or if the me is morphing again like it did after the first 10 yes.
 

jann1033

Senior Member
Messages
176
@Artstu
If you didn't have a chance you should view the video a few posts up. I would think from that any intense exercise is out for anyone with ME. So if intense exercise is doable, that would have to take a DX of ME out of the equation. FM maybe or some other cause of fatigue ? but due to his explanation, not ME.
 
Messages
15
Location
USA
I've worked up to being able to exercise 20 minutes a day (with a 3 hour prep/recovery-period). I have also had experience with Tai Chi and yoga. It's made me a little fitter muscularly, but no better fatigue-wise. I would still do (light, easy) exercise for its own sake, but not in search for a cure.
 

manna

Senior Member
Messages
392
I've worked up to being able to exercise 20 minutes a day (with a 3 hour prep/recovery-period). I have also had experience with Tai Chi and yoga. It's made me a little fitter muscularly, but no better fatigue-wise. I would still do (light, easy) exercise for its own sake, but not in search for a cure.

hi mi12, cool you've tried tai chi. may i ask, was this in a group or alone? atb
 
Messages
15
Location
USA
hi mi12, cool you've tried tai chi. may i ask, was this in a group or alone? atb
It was at a local community college, 24-form (example) that I learned it. I practice it at home, although I don't recently since other exercise has taken priority.

Have you tried any similar exercises?
 

manna

Senior Member
Messages
392
@mi12 yes i did tai chi for a bit and got quite a powerfull healing response to it. the reason i asked is that a club is supposed to be much better due to the "energy share" but it seems you did that anyway. i did chen style. i would dearly like to take it up again. mcs makes it tricky to go to a class and learning at home has been unbeneficial. hopefully i'll try it again at some point.
 

SOC

Senior Member
Messages
7,849
It was at a local community college, 24-form (example) that I learned it. I practice it at home, although I don't recently since other exercise has taken priority.
May I ask at what was your Activity Level when you were able to do Tai Chi? I tried both Tai Chi and yoga when I was sicker and crashed badly after every class I attended. Now that I'm getting better, and closer to being able to accomplish most of my activities of daily living, I'm looking forward to the time when I can attempt them again. So I'm trying to get a feel for what level of functioning is a good place to look into that kind of exercise again.

Just as a point of reference, were you able to walk around in a grocery store or do other shopping/walking before you were doing Tai Chi? You said you took class at community college. Were you able to walk in from the parking lot and around in the college, or did you have to wheelchair in, but could still do the Tai Chi?
 
Messages
15
Location
USA
May I ask at what was your Activity Level when you were able to do Tai Chi? I tried both Tai Chi and yoga when I was sicker and crashed badly after every class I attended. Now that I'm getting better, and closer to being able to accomplish most of my activities of daily living, I'm looking forward to the time when I can attempt them again. So I'm trying to get a feel for what level of functioning is a good place to look into that kind of exercise again.

On that ME/CFS primer you pointed out I am about a 6 on the functional capacity scale. At the time I was dizzy constantly and would often crash after a 5-10 minute walk, but could (barely) handle the gentle tai chi moves. Gentle is the key word, if you are exerting yourself then I think it may not be the right time for you. My experience with yoga is similar, sometimes I could do exertion, other times I was content just to do the stretching moves. My guidebook I used for those days is this. There is a simple ,but comprehensive routine in the back of the book (you can really skip all the other pages if you wanted).

Just as a point of reference, were you able to walk around in a grocery store or do other shopping/walking before you were doing Tai Chi? You said you took class at community college. Were you able to walk in from the parking lot and around in the college, or did you have to wheelchair in, but could still do the Tai Chi?.

No, no wheelchair--although I have said sometimes it would help if I had a cane (would make my illness visible). I was able to do shopping. Many of my days were spent crashed on the couch, usually for 4-5 hour periods, although at the time I took tai chi I was really at my best..
 

SOC

Senior Member
Messages
7,849
On that ME/CFS primer you pointed out I am about a 6 on the functional capacity scale. At the time I was dizzy constantly and would often crash after a 5-10 minute walk, but could (barely) handle the gentle tai chi moves. Gentle is the key word, if you are exerting yourself then I think it may not be the right time for you. My experience with yoga is similar, sometimes I could do exertion, other times I was content just to do the stretching moves. My guidebook I used for those days is this. There is a simple ,but comprehensive routine in the back of the book (you can really skip all the other pages if you wanted).



No, no wheelchair--although I have said sometimes it would help if I had a cane (would make my illness visible). I was able to do shopping. Many of my days were spent crashed on the couch, usually for 4-5 hour periods, although at the time I took tai chi I was really at my best..
Thanks, that helps. :) I'm not quite there, yet. Still can't walk for any length of time, although I can be on my feet more. I can work a part-time job where I'm sitting a lot, standing when I want to, but don't have to walk very far.

My goal is to start more stretching and maybe some Pilates once I settle into my new job. Assuming, of course, I continue to get slowly better.
 

Artstu

Senior Member
Messages
279
Location
UK
I quite agree. They should conduct some trials. You have no proof that it isn't possible to work on reducing the effects of PEM, because no one has conducted a trial.

Yes they have. Watch this video it is very good.

That's not a trial studying the effects repeated high effort exercise has on reducing the effects of PEA (a much better term than PEM)
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
The trial you want would be, as I said before, equivalent to trying to find the pigs with wings to do the trial on flying pigs on.

Folk with ME cannot do high intensity exercise. That is the defining feature of ME.
The trial you want cannot be done.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Well, looking just at my own home city, given the unemployment level is 4 in 10, (40%) perhaps it's because we can't afford bikes. :p
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I would like to chip in here to say that I believe it IS possible to exercise with M.E but in my experience only if very mildly affected - or perhaps its related to duration of illness.

When I was first sick I could after 2 years of being ill do yoga and swimming and cycling - I had to usually go home and sleep straight afterwards for a few hours and as I was living on my own with two small children I was also sleeping VERY long nights - 8 pm to about 8 am. But at this point I had started to be significantly better anyway. Then for the next 10 years I was able to exercise with swimming, some cycling, some long walking etc. In essence I thought I was recovered but inf act was not fully - I couldn't work and look after kids and exercise etc and my stamina never really improved although I 'felt' fitter.

I was able to do this while very mildly affected or in a remission until 6 years ago when I had such a serious relapse that I have had to use a wheelchair for going out. Now I can't tolerate even two stretches a day on top of tasks of daily living and caring for a family (i can now cook every day for them, but usually have to lay down for the rest of the evening after eating).

I can just about manage a small amount of hoovering, or light gardening, but afterwards I feel pretty deathly for a while.