has anyone really benefited ie cured by exercise?

[Artstu]

Curious as to what caused your pem if not exercise? Also how long were you sick when you started your exercise? What state were you in at the time.? I saw your profile said you got sick in 2006, and I think you said somewhere you built up over a number of years time?

I've had three hard days on the bike so have no energy today at all. I was around two years into illness before I got the correct diagnosis, after reading up about the illness that was the point I started to try and stop my decline and to try to hang onto the limited mobility I had. That was six years ago.

 

[lansbergen]

I've had three hard days on the bike so have no energy today at all. I was around two years into illness before I got the correct diagnosis, after reading up about the illness that was the point I started to try and stop my decline and to try to hang onto the limited mobility I had. That was six years ago.

You only declined 2 years and claim others that declined much longer and were far futher gone must do what you did.

I think you have no idea what severe ME is.

 

[SOC]

I've had three hard days on the bike so have no energy today at all.

No energy after 3 hard days on the bike is not PEM. We keep telling you to that, but you're not listening. What those of us who actually suffer from PEM get after too much exercise is entirely different.

I'm going to put this up for you to read one more time. Please read it this time so you understand what people are talking about when they say they can get PEM from something as simple as walking to the mailbox.

Please pay particular attention to the parts I've marked in red.

From the International Consensus Criteria for Myalgic Encephalomyelitis

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

This is NOT fatigue, or lack of energy. This is not low on energy after 3 hard days on the bike.

It's wonderful that you can exercise. Just because you can exercise, doesn't mean it's possible, or even safe, for people with ME.

Telling your story is one thing. Pushing people to exercise when it's not safe for them is another. Claiming that they are simply not trying or are being negative is unfair.

You clearly don't understand what people with ME are dealing with. That's okay, no one says you have to. But don't keep insulting people who are doing the best they can with what they have. Do you go around pushing people with broken legs to go for a nice long run because running is healthy and it made you feel better when you had a cramp in your leg?

Tell your story all you want. People will listen or not depending on whether they think it is relevant to their situation.

 

[Artstu]

You only declined 2 years and claim others that declined much longer and were far futher gone must do what you did.

I think you have no idea what severe ME is.

My posts aren't aimed at anyone in particular, I'm just sharing my experience on exercise.

 

[Artstu]

No energy after 3 hard days on the bike is not PEM. We keep telling you to that, but you're not listening. What those of us who actually suffer from PEM get after too much exercise is entirely different.

I'm going to put this up for you to read one more time. Please read it this time so you understand what people are talking about when they say they can get PEM from something as simple as walking to the mailbox.

Please pay particular attention to the parts I've marked in red.

From the International Consensus Criteria for Myalgic Encephalomyelitis


This is NOT fatigue, or lack of energy. This is not low on energy after 3 hard days on the bike.

It's wonderful that you can exercise. Just because you can exercise, doesn't mean it's possible, or even safe, for people with ME.

Telling your story is one thing. Pushing people to exercise when it's not safe for them is another. Claiming that they are simply not trying or are being negative is unfair.

You clearly don't understand what people with ME are dealing with. That's okay, no one says you have to. But don't keep insulting people who are doing the best they can with what they have. Do you go around pushing people with broken legs to go for a nice long run because running is healthy and it made you feel better when you had a cramp in your leg?

Tell your story all you want. People will listen or not depending on whether they think it is relevant to their situation.

Yes I've read it yet again, and that is what I experience, exercise has lessened the effects over the years.

 

[SOC]

Yes I've read it yet again, and that is what I experience, exercise has lessoned the effects over the years.

Then explain how you can do routine high intensity exercise if you suffer a relapse with prominent symptoms in the neuroimmune regions including acute flu-like symptoms, pain, worsening of all ME symptoms that lasts for days or weeks every time you exercise? That makes no logical sense. You can't do high intensity exercise every day or even every other day if you have a relapse lasting days or weeks every time.

No, I repeat, NO medical expert on ME recommends high intensity aerobic exercise for patients with ME. It is well known that our aerobic metabolism is not functioning properly. The fact that you can do routine high intensity aerobic exercise is inconsistent with ME.

Some patients with ME can do low intensity exercise that does not tax the aerobic system. That is another matter.

You could very well have CFS by the Oxford Criteria, or chronic fatigue as the result of a condition such as dysautonomia or a cardiac issue. In that case, you may be able to exercise at high intensity. Unfortunately, that experience does not translate to the experience of people with ME.

 

[lansbergen]

My posts aren't aimed at anyone in particular, I'm just sharing my experience on exercise.

You did more than that.

 

[jann1033]

My posts aren't aimed at anyone in particular, I'm just sharing my experience on exercise.

That is why I asked you how long etc. My step sister in law was dxed with" CFS" 2012 or so after being "fatigued" for a few weeks-1 month. While i don't doubt something was wrong, I can guarantee what she had/ has is not what I have. She was back to part time work after 2 weeks, full time work not long after. So for me to assume I would get the same results following her regime would be foolish since I don't think our illness are the same.

Realistically if I rode a bike for one day I literally think I would die as when I exert myself I am so fatigued I have often wondered just how fatigued I have to be before my vital organs shut down, NOT an exaggeration. Iam too fatigued to have energy to move a limb, if its hanging off the edge of the bed i do not have enough energy to move it onto the bed. That does not sound like what you are discribing.I used to hike, jog PRe-cfs so know the difference. I'm sure you were and may be ill but not with what we are talking about, no offense intended

 

[SOC]

@Artstu
FYI
Notice "functional impairment", not "lack of desire to perform" or "negative attitude".

Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment.
Keller BA1, Pryor JL, Giloteaux L.
Author information

Abstract
BACKGROUND:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-system illness characterized, in part, by increased fatigue following minimal exertion, cognitive impairment, poor recovery to physical and other stressors, in addition to other symptoms. Unlike healthy subjects and other diseased populations who reproduce objective physiological measures during repeat cardiopulmonary exercise tests (CPETs), ME/CFS patients have been reported to fail to reproduce results in a second CPET performed one day after an initial CPET.

The full article is here. It is well worth reading for people who want to know about the problems with exercise for people with ME.

 

[acrosstheveil]

electric bikes are awesome! i work in the service dept. of a big bike shop and we just started carrying a ton of them. They are pedal assist so you are still getting exercise. You just have the ability to go much further. the technology has come a long way. Some of the models reach 30 mph no problem and the battery will last and not drain on you in the middle of a ride.

 

[jann1033]

electric bikes are awesome! i work in the service dept. of a big bike shop and we just started carrying a ton of them. They are pedal assist so you are still getting exercise. You just have the ability to go much further. the technology has come a long way. Some of the models reach 30 mph no problem and the battery will last and not drain on you in the middle of a ride.

The thing is if you still move your legs how does it not use up your energy?

 

[Artstu]

@Artstu
FYI
Notice "functional impairment", not "lack of desire to perform" or "negative attitude".


The full article is here. It is well worth reading for people who want to know about the problems with exercise for people with ME.

You have completely the wrong idea about my illness. Perhaps my poor literacy skills are not allowing me to convey the full picture. Having dropped out of school in my teens to work on the farm and then doing hard physical work my whole working life, it wasn't until I bought a computer a few years ago that I ever had any need to write anything.

It is most certainly not "lack of desire to perform" or "negative attitude". that I experience.

It's all very well you quoting and directing me to two day exercise test results. However that has no bearing on someone who has spent six years working on those exact effects.

 

[Artstu]

You did more than that.

You need to write much longer posts to explain yourself, your cryptic posts don't convey much.

 

[Artstu]

That is why I asked you how long etc. My step sister in law was dxed with" CFS" 2012 or so after being "fatigued" for a few weeks-1 month. While i don't doubt something was wrong, I can guarantee what she had/ has is not what I have. She was back to part time work after 2 weeks, full time work not long after. So for me to assume I would get the same results following her regime would be foolish since I don't think our illness are the same.

I'm in full agreement. I don't believe anyone has our illness when they can improve in such a short period of time.

 

[Artstu]

The thing is if you still move your legs how does it not use up your energy?

I don't think anyone is suggesting it doesn't use up all your energy. That's what exercising does,more so especially when you're ill. The e-bike just means you can limit the input (keep your HR below a certain level) you make, and you go further than you would do without the assistance.

 

[Ambrosia_angel]

I don't understand what your argument is artstu? Nobody said that people with CFS/ME can't exercise or people with ME don't exercise. Everyone has it to different degrees. Also for some people exercise can be walking to and from the toilet. My daily exercise is walking upstairs to go toilet but a lot of the time I have to pee downstairs or stay upstairs because its just too difficult. Your standards of exercise aren't the same as others so you need to get that close minded idea out of your head.

We exercise as much as possible. I can't wait for the day when I can run on a treadmill without my body not coping but for now that is impossible.

 

[jann1033]

I don't think anyone is suggesting it doesn't use up all your energy. That's what exercising does,more so especially when you're ill. The e-bike just means you can limit the input (keep your HR below a certain level) you make, and you go further than you would do without the assistance.

Could be differences in responsibilities then. I can't afford to use my energy like that. I need it to maintain the amount of self care and chores I can do.
The thought of an exercise ceiling for at least some is interesting though. I've tried to increase my "tolerance" for activity for over a decade now by " pushing" my energy envelop occasionally and much outside of it= crash. I get even less accomplished while feeling worse so no benefits.
My personality is such that I detest just sitting around, for example going fishing would just annoy me. That actually has been the hardest thing for me to accept with this illness so it isn't for lack of trying that I am stuck with this energy level.

 

[Artstu]

Could be differences in responsibilities then. I can't afford to use my energy like that. I need it to maintain the amount of self care and chores I can do.

We all have to make our own choices. Please remember your original question
has anyone really benefited ie cured by exercise?
I'm only here responding to the question you asked. Whilst not cured, I have benefited from exercise.

 

[manna]

i can exercise at the mo but chose not to. if i do i get evengelestic about it. i note i do this with many things and in retrospect its because they're actually making me worse yet at the time im so immersed in it that i can't see it. if anyone said anything id become quickly defensive. from the outside it was probably obvious to others that i couldn't ground the therapy, be it exercise or whatever. if i walk my legs are better but my gut is worse.

as for benefit...you have the fresh air, you have the outdoors...your body will like these things but are you benefitting...? more oxygen, daylight, vit d, nice scenery, "cleaner insides" etc...all these are plusses of course. what if, within all these benefits, ultimately the exercise is ungrounding your spleen/pancreas meridian andf preventing actual recovery. its possible. an ungrounded spleen/pancreas meridian can mean that you seem to have more energy. i wish i could explain it. i don't want to prove you wrong. i've messed around with exercise an no exercise for 16 years and have only recently found that it always hinders...unless its implosive like qui gong, taiji, yoga, polarity yoga...within reason.

of course not exercising explosively, as opposed to implosively, does not mean you'll recover but at present you could be preventing recovery if everything else, diet etc, were right but this were wrong. only way to find out is to not exercise as well. really i think start to finish in any case of me/cfs to recovery is 6-12months tops.

 

[Mij]

@Artstu you wrtoe

You have completely the wrong idea about my illness. Perhaps my poor literacy skills are not allowing me to convey the full picture. Having dropped out of school in my teens to work on the farm and then doing hard physical work my whole working life, it wasn't until I bought a computer a few years ago that I ever had any need to write anything.

It is most certainly not "lack of desire to perform" or "negative attitude". that I experience.

It's all very well you quoting and directing me to two day exercise test results. However that has no bearing on someone who has spent six years working on those exact effects.

Your responses have nothing to do with your literacy skills, they appear just fine to me. 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. A better term we use now is post exertional amplification of symptoms, this is not tiredness or feeling bad. The 2 day exercise performance test is the key and PEM is unique to ME.

Have you been tested for OI? I am at this point questioning whether you have ME.