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

[Kyla]

Ditto for this. If those who were thrown into a GET program were in the early stages of ME/CFS, they are likely to be getting worse anyway for the first few years (assuming they are the gradual onset type).

That would only apply if the same level of harms were reported for the other two interventions studied (CBT and Pacing). If deterioration is due to the natural course of ME rather than the specific intervention they should all have very similar outcomes which was very much not the case.

 

[Hip]

@Kyla
I take it you are referring to the PACE trial. I understood that this trial showed that CBT and GET were both beneficial (even though they used dodgy methodology), and that pacing showed little benefit.

 

[Kyla]

...also it would appear many were NOT early in the illness:

 

[SOC]

Though I think if she was doing this marathon training in the early stages of her illness, which as many of us know, is a period where you tend to get worse and worse for a quite a few years until you stabilize, then it could be that she would have worsened anyway, with or without exercise.

I don't believe there's any reliable evidence that getting worse and worse in the early years is the natural course of the illness. There are some people who are very bad at first, have some recovery, and then plateau at a lower level of function than they had pre-illness. There are people who start out mild and don't develop more severe illness until they have a physiological stressor -- significant overwork, infection, vaccination, etc. In fact, there are any number of progression patterns. There is certainly no research on the natural course of this illness.

Any anecdotal evidence of worsening in the early years would have to be considered in the light of the fact that most of us either didn't know what we had in the early years, or didn't know how to manage it properly, and so were constantly overdoing. So the experience of worsening for the first few years could just as easily be attributed to deterioration due to overdoing as to it being the natural course of the illness.

 

[Kyla]

@Kyla
I take you are referring to the PACE trial. I understood that this trial showed that CBT and GET were both beneficial (even though they used dodgy methodology), and that pacing showed little benefit.

No, I'm referring to the document I linked previously.
http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf

 

[SOC]

@Kyla
I take it you are referring to the PACE trial. I understood that this trial showed that CBT and GET were both beneficial (even though they used dodgy methodology), and that pacing showed little benefit.

What they said they showed, and what a careful look at the limited information they provided actually showed are not the same thing.

 

[Kyla]

 

[heapsreal]

I was also diagnosed with PVFS by an M.E specialist in Canada. He later diagnosed me with atypical M.E. after I had a relapse.

I'm not sure that PVFS last for 24yrs?

Majority of drs would class pvfs cfs me as the same thing.

 

[Kyla]

ugh. sorry that is so small.
let me try again.

 

[jeff_w]

The activity advice you are giving is contrary to that of the top ME/CFS specialists and the exercise physiologists who study ME/CFS. Since you are not seeing one of them, and haven't had the testing to verify aerobic energy system dysfunction, you might want to be careful about advising behavior that, while it works for you, may be very bad for the vast majority of people with ME/CFS.

Yes. Additionally, the evidence shown above is clearly in favor of pacing and shows that GET is more often detrimental than not.

 

[Valentijn]

I live in Canada and there aren't any CFS specialists in British Columbia, and a 2-day CPET scan is out of the question. I doubt very many people have had these tests even if living in the US.

Any hospital or exercise/sports clinic can run a CPET. It's actually a very simple exercise test, usually on a bicycle, and can be quite cheap. No scanning is involved. It cost me about 80-100 euros for a single test in Brussels, and should only be particularly expensive at the cutting-edge research labs.

I should go back to calling my illness Post Viral Fatigue Syndrome which is what I was originally diagnosed with. Maybe it isn't CFS/ME, however, my doctor is under the impression that they are the same illness.

It's hard to imagine that your reaction is part of ME/SEID. The PEM reaction for most ME/SEID patients is severe enough that it grossly overshadows the feel-good reaction to exercise and the deeper sleep. 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.

Frankly it's pretty mind-boggling that someone would willingly subject themselves to something as horrible as PEM over and over and over again for such a mild and transitory gain. Which really does lead me to think that you have a very different concept of PEM. And that could also suggest that your reaction is actually a different form of exercise intolerance and/or DOMS, instead of PEM.

At any rate, please accept that exertion is harmful for ME/SEID patients by the very definition of the disease, and that it's pretty dangerous and even cruel to suggest that it might help us.

 

[Mij]

Frankly it's pretty mind-boggling that someone would willingly subject themselves to something as horrible as PEM over and over and over again for such a mild and transitory gain. Which really does lead me to think that you have a very different concept of PEM. And that could also suggest that your reaction is actually a different form of exercise intolerance and/or DOMS, instead of PEM.

I did this for years when my PEM was . . . . ummm . . . unpleasant? I got psychological gratification and was thinking a lot like Tigerlea.at time, but to be honest I didn't understand PEM. Fast forward 15yrs later, just the thought of it makes me ill- it is something I never want to feel again. There were 2 or 3 occasions when I seriously considered going to emergency. I don't know what they would have done for me but I was that scared.

 

[heapsreal]

I did this for years when my PEM was . . . . ummm . . . unpleasant? I got psychological gratification and was thinking a lot like Tigerlea.at time, but to be honest I didn't understand PEM. Fast forward 15yrs later, just the thought of it makes me ill- it is something I never want to feel again. There were 2 or 3 occasions when I seriously considered going to emergency. I don't know what they would have done for me but I was that scared.

And we are told by drs to exercise and that its good for u and make u better. And to keep building it up??

it can be a tough lesson to learn, lucky we have people to help each other out and support each other .

 

[Mij]

And we are told by drs to exercise and that its good for u and make u better. And to keep building it up??

it can be a tough lesson to learn, lucky we have people to help each other out and support each other .

it's downright dangerous and criminal.

 

[Mij]

What I always wondered yrs ago, and I think SOC asked this question recently was this- is the pathology there from day one even if you don't experience PEM from the start of illness (as it was for me)? The answer is yes. I think the 2 day CPET and blood work analysis would show abnormalities right from the start. The marathon runner that Mark VanNess was referring to is the classic example. How can she run a marathon and not realize she was worse until they did the test?

 

[heapsreal]

What I always wondered yrs ago, and I think SOC asked this question recently was this- is the pathology there from day one even if you don't experience PEM from the start of illness (as it was for me)? The answer is yes. I think the 2 day CPET and blood work analysis would show abnormalities right from the start. The marathon runner that Mark VanNess was referring to is the classic example. How can she run a marathon and not realize she was worse until they did the test?

She would have known but in denial .

For me in the beginning i think being a regular exerciser helped me notice the decline but we continue for awhile trying to exercise as i use to. Stamina, strength and exercise recovery all worsened. In the beginning i was able to predict crashes as i would notice this decline in exercise performance along with other symptoms like insomnia, pain etc and than i would completely crash in bed for several days or longer.

I tried many ways to keep exercising by alternating intensity and improving recovery with no success until i greatly changed what i did and greatly reduced my expectations . But i also accepted long periods of months where i did no exercise, just work and rest .

Not sure if it was trying to exercise or a natural progression but eventually my relapsing and remitting cfsme became a constant low . But i have managed to improve and be able to function and work . Exercise in a cfs way is very up and down. Exercise in cfs i talk of if different to wwhat normal people would consider exercise.

 

[Hip]

I don't believe there's any reliable evidence that getting worse and worse in the early years is the natural course of the illness.

When ME/CFS appears to be triggered by a viral infection, you either get the instant onset ME/CFS, in which the full severity of the disease hits you within days of contracting the infection; or the gradual onset ME/CFS, in which the full severity of the disease slowly appears over months or even years. So in the viral onset, this disease either hits you all at once like a ton of bricks, or you more slowly ramp into the disease.

So I am just pointing out that during any period in which you are ramping into ME/CFS, this would not be a good time to test the effects of exercise.

Any anecdotal evidence of worsening in the early years would have to be considered in the light of the fact that most of us either didn't know what we had in the early years, or didn't know how to manage it properly, and so were constantly overdoing. So the experience of worsening for the first few years could just as easily be attributed to deterioration due to overdoing as to it being the natural course of the illness.

It could be attributed to overdoing it, or it could be the natural disease progression. Unfortunately we do not know which.

I mentioned above that I think the most reliable way of seeing if regular exercise (that pushed you into PEM / crashes) could permanently worsen ME/CFS would be from a patient who was symptomatically stable for several years, and then they started pushing their exercise envelop a bit.


In Dr Chia's interferon treatment research, in patients who went into remission as a result of the treatment, it was strenuous exercise that caused a catastrophic relapse into ME/CFS, and a concomitant return of the enteroviral infection that each patient had. So here is good evidence that exercise can be a bad thing went it comes to enterovirus-associated ME/CFS.

However, as for evidence that a stable ME/CFS patient might get worse if they engage in regular exercise / PEM / recovery cycles that are not too strenuous, I have not seen any.

Maes and Twisk did publish a paper in which they stated:

this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces post-exertional malaise with a decreased physical performan-ce/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and a long lasting "recovery" time.

But I don't think there was any hard evidence for this negative impact (the full paper is not available for free).

 

[Kyla]

But I don't think there was any hard evidence for this negative impact .

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.

 

[TigerLilea]

Why is a 2-day CPET out of the question? It could clearly confirm (or deny) your feeling that you can safely push yourself the way you are. The 2-day CPET could be done anywhere the CPET is done, which is any hospital with a cardiology unit.

Why? Because I live in Canada where we don't have private medical insurance, we can't get tests done on demand, we have long waiting times to get in to see specialists. My doctor has tried getting me in to see specialists but once they go through my medical records they refuse to see me as I don't have the "accepted" conditions to warrant further testing.

 

[SOC]

Majority of drs would class pvfs cfs me as the same thing.

Why? Because I live in Canada where we don't have private medical insurance, we can't get tests done on demand, we have long waiting times to get in to see specialists. My doctor has tried getting me in to see specialists but once they go through my medical records they refuse to see me as I don't have the "accepted" conditions to warrant further testing.

We can't get tests on demand, either. Still, I understand about doctors being unwilling to test or treat because they can't see what they think they need to see... even if it's right in front of their faces.