Increasing aerobic workout - I crash after 15 mins - but want to gradually increase...?

[TigerLilea]

Chronic Fatigue Syndrome - Synonyms: myalgic encephalomyelitis (ME), post viral fatigue syndrome, chronic fatigue and immune dysfunction, 'yuppie flu'

Yes, people, I do have CFS. I'm not going to apologize because I don't fit into your limited view of what CFS should look like. I understand perfectly well what PEM is. I have suffered through it for the past 24 years but I sure as hell am not going to let it stop me from living my life. When I can - I do. And when I'm down with PEM then I don't. Quite simple really.

 

[anniekim]

This thread seems to be full of warnings about the dire consequence of pushing past your physical exercise limits, with suggestions that this can cause a progression to a worse state of ME/CFS.

However, is there actually any evidence for this?

I am obviously not denying that pushing past your exercise limits can lead to a longer than normal crash, and that you will need to take longer than normal to recover from this. However, that in itself is not the same as causing a progression of ME/CFS.

Evidence of an exercise-induced progression would be where your ME/CFS has been stable for many years, and then due to doing too much exercise, you actually became permanently worse.

I have had M.E for 17 years. Moderate for first five years then more severe after doing too much activity. Five years ago, I was about level 2 to 3, I could mobilise around my flat, do my own personal care and go out for short trips pushed in a wheelchair by my carer. One day so fed up with being so limited I stupidly did about a 200 metre walk, much more than I could do without PEM symptoms, Overnight I could no longer get up and down stairs or sit in a chair, insomnia kicked in, pain and noise sensitivities increased and orthostatic intolerance came on immediately which I still have. I could only walk for a couple of steps and had to use furniture to mobilise around the flat. I became completely housebound. Still haven't been able to leave my home five years on.

2 years ago, 3 years into being completely housebound, I declined further into a bedridden state, which I still am, must use a commode by my bed, too ill to get to my bathroom. For me, that walk caused damage from which I have never recovered. Also my decline from moderate to severe ten years ago happened I believed by pushing too much too often, so for me doing more than my body can manage has caused permanent deterioration.

 

[Hip]

I think a 1500 patient retrospective study IS pretty hard evidence.

The only way they could make this more robust would be to run another trial, and after demonstrating it to be this detrimental that would be quite unethical.

Looking at the ME Association Survey on CBT, GET and pacing in more detail, it does on the face of it seem to provide evidence of a negative effect of GET in 68% of mild to moderate ME/CFS patients, and in 87% of the severe ME/CFS patients (page 208 of the survey). As well of course as evidence for a positive effect of GET in a small percentage of patients.

Interesting that in the mild to moderate group, 4% of patients found they either became completely well or very much better after GET. That does tie in with the reports we sometimes see on this forum or in newspapers that exercise cured or greatly improved some ME/CFS patients.


What I would like to know, in both the negative and positive effects cases, is how long these effects lasted after the course of GET was finished. Were these good and bad effects just a temporary condition, that lasted say three to six months, or were they much more long lasting or permanent?

Whether the results of GET were permanent or temporary makes a big difference in interpreting them. If these results were only relatively temporary for a few months, then we cannot say that GET either permanently harms or permanently improves ME/CFS.

It is a pity that the survey did not include a question asking patients how long the good/bad effects lasted for.


Another question that I would have liked to seen in the survey is one about the early signs and early warnings about positive and negative effects of GET, as the course of GET was started and progressed. It would have been good to know whether those patients who significantly benefited from GET started to feel these benefits early on in the GET treatment; and likewise, whether those who had significant negative effects from GET started to notice these ill effects at an early stage.

Assuming there were these easy-to-spot early indications of good or bad effects, then the advice that should be given to ME/CFS patients regarding exercise would be that if it feels it is doing you good, then continue with your exercise program; whereas if it feels like it is having a negative effect, then stop you exercise program.

That would very much simplify and clarify the advice that we can give on this forum regarding exercise.

 

[anniekim]

Have you seen Mark VanNess's video? He had a women who continued to run marathons, obviously high functioning MEer, when she came back to do the CPET test she was WORSE. Go to 25:24 minutes

It's a great video, have watched in the past. Just a little thing but I thought he said she used to run marathons before M.E, not still doing them. She then embarked on an aerobic training program to try and get back to it but after six months it did not work. Obviously still high functioning if could do an aerobic program, even though her cpet results showed she got worse, but not back to marathon running

 

[Hip]

I have had M.E for 17 years. Moderate for first five years then more severe after doing too much activity. Five years ago, I was about level 2 to 3, I could mobilise around my flat, do my own personal care and go out for short trips pushed in a wheelchair by my carer. One day so fed up with being so limited I stupidly did about a 200 metre walk, much more than I could do without PEM symptoms, Overnight I could no longer get up and down stairs or sit in a chair, insomnia kicked in, pain and noise sensitivities increased and orthostatic intolerance came on immediately which I still have. I could only walk for a couple of steps and had to use furniture to mobilise around the flat. I became completely housebound. Still haven't been able to leave my home five years on.

2 years ago, 3 years into being completely housebound, I declined further into a bedridden state, which I still am, must use a commode by my bed, too ill to get to my bathroom. For me, that walk caused damage from which I have never recovered. Also my decline from moderate to severe ten years ago happened I believed by pushing too much too often, so for me doing more than my body can manage has caused permanent deterioration.

Very sorry to hear that this happened to you, though thanks for posting this account, because this type of anecdote is very helpful for showing that pushing your exercise envelope can be very detrimental for some patients. I take it you were quite stable in your ME/CFS for some years prior to doing this 200 m walk, and that there were no other known factors (like a change of medication, or exposure to a new infection, etc) that could have played a role in this worsening of your condition.

We should perhaps start a poll on this forum to see how many other stories of a long term / permanent worsening of ME/CFS symptom there are similar to yours. Certainly this is a cautionary tale.

 

[anniekim]

Hi Hip,

Yes, I was stable before this, been at that level for a few years, had no change of medication, diet, external stress or infection at the time of the huge relapse, relapse directly happened after the very short walk.

Just to add, the decline from completely housebound to completely bedridden two years ago followed five days after a bad tummy bug so I presume that was the cause for the further decline but the relapse from getting out a few times a week, sitting and standing with no problem, getting up and down stairs, showering to completely housebound and being unable to sit in a chair, could only manage lying propped up on the sofa with legs up, was after the short walk.

 

[Mij]

@annieken she was a marathon runner before M.E. "she was certain she could retrain herself, she wanted to do the exercise test to find out her heart rate threshold etc, so that she could go back to doing aerobic activity. After she left she started a very rigorous aerobic training program and in order to that, as you guys know, she had to cut a lot of things out of her life to accommodate energy that the running took. And after 6 months of very dedicated training and recovering from that she came back to the lab and did another series of tests and after all that training she was actually worse".

you're correct, she didn't actually do a marathon.

 

[anniekim]

Chronic Fatigue Syndrome - Synonyms: myalgic encephalomyelitis (ME), post viral fatigue syndrome, chronic fatigue and immune dysfunction, 'yuppie flu'

Yes, people, I do have CFS. I'm not going to apologize because I don't fit into your limited view of what CFS should look like. I understand perfectly well what PEM is. I have suffered through it for the past 24 years but I sure as hell am not going to let it stop me from living my life. When I can - I do. And when I'm down with PEM then I don't. Quite simple really.

Is it perhaps the case some people with this illness can get PEM, rest, then get back to their baseline, be it 40%, 20% of previous healthy functioning, after resting for a week or so. Then some find experiencing PEM too frequently can result in permanent further decline, or even as happened to me one case of PEM causing permanent further disability. I can see if one can always get to back to baseline that some activities might be worth getting PEM but for some this can lead to permanent deterioration. I hope science one day can identify who those will be.

I know when my M.E was moderate for the first five years of illness I would choose to do some activities (never exercise as that ability went from the start) knowing I would have PEM for a few days, but then get back to baseline. Unfortunately, after five years of living like this I did decline permanently

 

[anniekim]

@annieken she was a marathon runner before M.E. "she was certain she could retrain herself, she wanted to do the exercise test to find out her heart rate threshold etc, so that she could go back to doing aerobic activity. After she left she started a very rigorous aerobic training program and in order to that, as you guys know, she had to cut a lot of things out of her life to accommodate energy that the running took. And after 6 months of very dedicated training and recovering from that she came back to the lab and did another series of tests and after all that training she was actually worse".

you're correct, she didn't actually do a marathon.

Thanks, hope I didn't come across as pedantic. Realise the speaker didn't give enough info to actually explain how much running was involved in the woman's exercise program which ultimately did not work.

 

[JaimeS]

The suggestion that those benefits make PEM "worth it", makes me feel about the same as the suggestion that cutting or similar self-harming behaviors are worth the endorphin rush. Especially when our "knife" often slips deeper than the skin when we're just expecting a shallow scratch.

That is an extraordinarily powerful statement, @Valentijn, and a striking metaphor.

-J

 

[Kyla]

Looking at the ME Association Survey on CBT, GET and pacing in more detail, it does on the face of it seem to provide evidence of a negative effect of GET in 68% of mild to moderate ME/CFS patients, and in 87% of the severe ME/CFS patients (page 208 of the survey). As well of course as evidence for a positive effect of GET in a small percentage of patients.

Interesting that in the mild to moderate group, 4% of patients found they either became completely well or very much better after GET. That does tie in with the reports we sometimes see on this forum or in newspapers that exercise cured or greatly improved some ME/CFS patients.


What I would like to know, in both the negative and positive effects cases, is how long these effects lasted after the course of GET was finished. Were these good and bad effects just a temporary condition, that lasted say three to six months, or were they much more long lasting or permanent?

Whether the results of GET were permanent or temporary makes a big difference in interpreting them. If these results were only relatively temporary for a few months, then we cannot say that GET either permanently harms or permanently improves ME/CFS.

It is a pity that the survey did not include a question asking patients how long the good/bad effects lasted for.


Another question that I would have liked to seen in the survey is one about the early signs and early warnings about positive and negative effects of GET, as the course of GET was started and progressed. It would have been good to know whether those patients who significantly benefited from GET started to feel these benefits early on in the GET treatment; and likewise, whether those who had significant negative effects from GET started to notice these ill effects at an early stage.

Assuming there were these easy-to-spot early indications of good or bad effects, then the advice that should be given to ME/CFS patients regarding exercise would be that if it feels it is doing you good, then continue with your exercise program; whereas if it feels like it is having a negative effect, then stop you exercise program.

That would very much simplify and clarify the advice that we can give on this forum regarding exercise.

Try the qualitative section at the end of the report.
There are many quotes like this in the GET sections:

"Before the course I was able to complete a 40 minute walk with no physical side-effects. After doing GET I could no longer walk for even 5 minutes without extreme breathlessness which lasted for up to three hours at its worst. I deteriorated so rapidly that my GP gave me an attendant wheelchair as I could no longer walk. Seven years later I still need the wheelchair. GET took away my independence and destroyed my life.”

(the bolding is mine)

 

[JaimeS]

@Kyla , I can't 'like' that post because of its content! But I appreciate what you've told us...

 

[jeff_w]

I understand perfectly well what PEM is. I have suffered through it for the past 24 years but I sure as hell am not going to let it stop me from living my life.

All of us on here are living our lives to the fullest extent that we can within the limits of our illness. Just as you are.

I'm not going to apologize because I don't fit into your limited view of what CFS should look like.

There's no need to apologize for having a non-progressive form of illness. Where you might want to apologize is for giving advice that is entirely contrary to the advice of top ME/CFS specialists and that has the potential to destroy the lives of many people who come on this board looking for answers.

The problem is, you set yourself up as having a "life is too short, seize the day, don't let your illness stop you from being active" attitude. That philosophy will only work for someone with a non-progressive form of illness, and you never once posted that disclaimer! Thus, a lot of newcomers could easily flock to your advice and crash and burn.

It's equivalent to someone with stage 1 cancer, posting on a cancer board speaking out against chemotherapy, "Life is too short to lose your hair and feel like you have poison running through your veins." Well, for someone with stage 1 cancer that can be cured without chemotherapy being necessary, that's reasonable. But there will be a lot of people on that board with stage 3 and 4 cancer, for whom the advice to not have chemotherapy will be deadly.

 

[Kyla]

Interesting that in the mild to moderate group, 4% of patients found they either became completely well or very much better after GET. That does tie in with the reports we sometimes see on this forum or in newspapers that exercise cured or greatly improved some ME/CFS patients.

4% is placebo territory

Such a small number could easily represent misdiagnosis, spontaneous recoveries etc.
In a country where the guidelines mandate the minimum of exclusionary testing I'm actually surprised this number isn't higher.


Regardless, if a pharmaceutical had 74% of patients reporting adverse events and 4% efficacy it would be pulled from the market immediately. It is doubtful anyone would be looking for how to identify that 4% as opposed to focusing on developing more effective treatments.

 

[TigerLilea]

Where you might want to apologize is for giving advice that is entirely contrary to the advice of top ME/CFS specialists and that has the potential to destroy the lives of many people who come on this board looking for answers.

If you go back to the very first message on this thread, the writer stated that they could do 15 minutes of exercise.

At the moment I am able to do about 15 mins of exercise.
Actually, 4 mins of weights and 15 mins of aerobic (medium paced on my elliptical trainer).
I know exercise is good for me, but if I do over 15 mins, the next couple of days I crash and feel fatigued and achy, I guess due to adrenal fatigue. If I do between 10-15 mins, I can feel pretty much OK next day.

All I am saying is that if he/she can do 15 minutes and feel "pretty much OK" the next day, then keep doing it. Find your limit.

 

[SOC]

Chronic Fatigue Syndrome - Synonyms: myalgic encephalomyelitis (ME), post viral fatigue syndrome, chronic fatigue and immune dysfunction, 'yuppie flu'

Yes, people, I do have CFS. I'm not going to apologize because I don't fit into your limited view of what CFS should look like. I understand perfectly well what PEM is. I have suffered through it for the past 24 years but I sure as hell am not going to let it stop me from living my life. When I can - I do. And when I'm down with PEM then I don't. Quite simple really.

I have no doubt you have CFS.

 

[Sushi]

I'm not going to apologize because I don't fit into your limited view of what CFS should look like. I understand perfectly well what PEM is. I have suffered through it for the past 24 years but I sure as hell am not going to let it stop me from living my life. When I can - I do. And when I'm down with PEM then I don't. Quite simple really.

I think what some of us are trying to say is that when some with ME/CFS exceed their energy envelope, the result is PEM that is permanent--or at least hasn't resolved in the years since the "exceeding." This effectively stops one from living any life we have know before.

If you have "gotten away with it," that is great. But others might not--hence the warnings coming from sad experience.

Sushi

 

[jeff_w]

I have no doubt you have CFS.

I agree.

It's a non-progressive form of ME/CFS. It allows you to safely do activity and recover from PEM that could easily destroy people with a progressive form of ME/CFS.

That's all I'm trying to say.

 

[heapsreal]

I agree.

It's a non-progressive form of ME/CFS. It allows you to safely do activity and recover from PEM that could easily destroy people with a progressivwheelm of ME/CFS.

That's all I'm trying to say.

I might be very similar and maybe others who are able to work are the same that they can recover from pem now? that it doesnt permanently lower their function.

could this be partially due to mito supps or hormone replacement or adrenal hormone use eg dhea and or hc. Maybe in some way supporting their body. Im not saying this works for everyone but maybe it helps many.

i know myself if i didnt have to work that i would improve which i do when on leave. When working my function does drop some but i continue to be able to function. I have had different viral infections where i have crashed and needed a week or 2 off work.

appears that there maybe a number of us that ate able to recovery from pem, how long this can go on for i dont know??

 

[jeff_w]

I might be very similar and maybe others who are able to work are the same that they can recover from pem now? that it doesnt permanently lower their function.

That was me for 3 full years. I had less than 50% of my former energy level, but I was still doing full time school and part time work. I'd even exercise at the gym once or twice a week while mildly ill (when I was fully healthy, I used to be a gym junkie, going 5 times per week!). I definitely had PEM as a result of school, work, and especially exercise -- but I would always recover from it.

After 3 years of this, I became completely bedridden in June of 2014. I'm slowly recovering but am still unable to work, not even part time.

appears that there maybe a number of us that ate able to recovery from pem, how long this can go on for i dont know??

That's the question! If only there were medical tests and classifications that could help us predict our futures.