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

[*GG*]

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.

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.

Seems like this thread is calming down, good!

Just want to say that we are NOT supposed to give medical advice, and of course any advice given should be taken with a grain of salt. People are well intentioned here, but we also need to take personal responsibility for any experiments we might do with your bodies!

Thank you gov't for practically ignoring us for a generation and adding to the human suffering in this world

GG

 

[TigerLilea]

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??

It's the viral infections that knock me down. Whereas most people will recover within about a week, I'm down for weeks at a time. I never had this problem before CFS.

 

[Hip]

4% is placebo territory

Such a small number could easily represent misdiagnosis, spontaneous recoveries etc.

Or it could represent a different subset of ME/CFS, such as a non-viral subset.


One thing is for sure: the figures show that around one-third of mild and moderate ME/CFS patients get no ill effects from GET.

 

[Sushi]

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.

I worked for ages (a few decades) before I had a crash that I never fully recovered from.

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

I hope there will be sometime soon.

 

[heapsreal]

It's the viral infections that knock me down. Whereas most people will recover within about a week, I'm down for weeks at a time. I never had this problem before CFS.

Yes, a simple cold for some is a flu for me and a 24hr gastro bug for others turns into 3 to 4 days for me, i think thats the nature of many with cfsme.

 

[Valentijn]

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 also pretty close to the rate of spontaneous remissions in adults.

But I seriously doubt GET has the capability of causing substantial improvement in anyone. If they have ME, it obviously isn't helping at all physically, as has been repeatedly proven in the BPS trials using actometers. And if they don't have ME, tiny incremental increases really aren't necessary, and there's no explanation of the mechanism for such a treatment to improve patients of other diseases.

GET might act as a placebo for some milder ME cases who can (for now) afford to ignore PEM without completely catastrophic consequences. Or it might coincide with independent remission. But even aside from the reported experience of pretty much every ME patient, the research itself has proven that it is ineffective.

Whether or not a maintenance level of exercise is beneficial is a different matter, however. But with even mild ME cases struggling to work full time and having little or nothing left for a social life, it seems rather perverse to push in few minutes of GET or other structured activity per day at the expense of not being able to do some household chores or visit with friends.

I have never seen any case where structured activity made any sense in ME patients. Either people do it and exceed their limitations, and spend a lot of time in misery during crashes, or they cut out essential life activities and pay someone else to do them instead, in order to dutifully go for a walk every day. It's completely irrational, distressingly so. And I can only think that our fatigue psychobabblers and Western society's "exercise cures everything" mentality are to blame for some patients being in such steadfast denial of reality.

 

[Valentijn]

Just want to say that we are NOT supposed to give medical advice, and of course any advice given should be taken with a grain of salt.

Good point. GET and other activity recommendations really are medical advice in the context of this disease. And activity has the potential to be far more harmful to us, and far more commonly, than pretty much any substance available over the counter or by prescription.

 

[Valentijn]

It's the viral infections that knock me down. Whereas most people will recover within about a week, I'm down for weeks at a time. I never had this problem before CFS.

Have you tested positive for any viruses when this happens? Infections and PEM can look pretty damned similar, especially when someone feels obliged to interpret the symptoms in a non-PEM context.

 

[Mij]

Have you tested positive for any viruses when this happens? Infections and PEM can look pretty damned similar, especially when someone feels obliged to interpret the symptoms in a non-PEM context.

They are very similar. Higher activity can stir up the immune system, this has been my issue for the last several yrs.

@TigerLilea can I ask when your PEM starts? Is it delayed for 16hrs+? For me when it's a viral infection the PEM-like symptoms can start right soon after activity or within a couple of hrs.

 

[JaimeS]

Absolutely, @Valentijn - PEM presents in me with a sudden fever and chills. If I didn't know better, I'd assume I had some virus, except that since mine is almost never delayed, it would be comical to assume I were 'catching a virus' every time. 'Virus on demand'? Nopenope.

-J

 

[Kyla]

Or it could represent a different subset of ME/CFS, such as a non-viral subset.


One thing is for sure: the figures show that around one-third of mild and moderate ME/CFS patients get no ill effects from GET.

I have to nit-pick with this a bit.

The figures show that around one third of mild and moderate ME/CFS patients get no LASTING ill effects.
ie - the baseline of their symptoms is not raised at the end of the study.
In fact if you look at that huge comment section, it shows most of those who reported symptoms being the same at the end of the course also report setbacks, crashing, and/or being unable to finish the course.

 

[Hip]

The figures show that around one third of mild and moderate ME/CFS patients get no LASTING ill effects.
ie - the baseline of their symptoms is not raised at the end of the study.
In fact if you look at that huge comment section, it shows most of those who reported symptoms being the same at the end of the course also report setbacks, crashing, and/or being unable to finish the course.

Certainly, you would not expect most ME/CFS patients to be able to do exercise without crashing and PEM. But the concerns raised in this thread are about possible long term or permanent worsening that exercise might bring, which are very real concerns, given the stories of permanent worsening through exercise.


One other point that is worth mentioning: quite a few ME/CFS patients have POTS, and exercise can improve POTS.

So if we take the case of mild ME/CFS patient with POTS, exercise may cause temporary PEM in such patients, but may have long term benefits by ameliorating POTS. It may even be that some patients in these studies only have POTS (which can mimic ME/CFS symptoms), and little or no ME/CFS at all. This might offer another explanation of why a small percentage can do well with exercise.

 

[Valentijn]

It may even be that some patients in these studies only have POTS (which can mimic ME/CFS symptoms), and little or no ME/CFS at all. This might offer another explanation of why a small percentage can do well with exercise.

In which case they were misdiagnosed, and exertion remains completely unhelpful Based on most ME patients having NMH or POTS in addition to ME, I think there would be many more pro-GET enthusiasts if it was ever capable of helping more than it hurts.

 

[SOC]

It may even be that some patients in these studies only have POTS (which can mimic ME/CFS symptoms), and little or no ME/CFS at all. This might offer another explanation of why a small percentage can do well with exercise.

This is my guess. Most, if not all, of the cases I've heard where supposed PWME can exercise, what they are calling PEM sounds a lot more like dysautonomia-induced exercise intolerance than ICC-described PEM. I would expect POTS-only patients to benefit from exercise when PWME don't.

Until we have an objective way to define PEM (Is CPET testing close enough?), we are not going to know for certain whether people diagnosed with ME/CFS/SEID actually have the energy production problems that are supposed to be core to the illness. As long as there are people being diagnosed by 'fatigue' and poorly understood 'PEM', there will be people under the ME/CFS umbrella who don't have the illness most of us are thinking of. So it isn't at all surprising that a small subset of people with ME/CFS diagnoses might not suffer long-term from exercise. The critical question is whether they suffer from the same illness as those of us who do have lasting consequences from PEM, or some other serious illness. Only solid research with objective markers will tell.

 

[Hip]

In which case they were misdiagnosed, and exertion remains completely unhelpful Based on most ME patients having NMH or POTS in addition to ME, I think there would be many more pro-GET enthusiasts if it was ever capable of helping more than it hurts.

Yeah it could be misdiagnosis; or it could be that a patient's POTS is much more severe than their ME/CFS, and that's why the positive effects of exercise on POTS outstrips the negative effects on ME/CFS. Pity they did not include a question on POTS in the survey. That might have settled this issue.


Am I right in thinking that exercise does not help NMH, just POTS?

 

[Valentijn]

Am I right in thinking that exercise does not help NMH, just POTS?

I think it's supposed to help uncomplicated OI in general. Though if looking at the cause rather than the symptoms, I wouldn't expect it to be helpful with any OI resulting from low blood volume.

 

[TigerLilea]

Have you tested positive for any viruses when this happens? Infections and PEM can look pretty damned similar, especially when someone feels obliged to interpret the symptoms in a non-PEM context.

Having a cold or a viral sinus infection is not even remotely close to the symptoms of PEM, at least not for me. With PEM I have extreme exhaustion, whereas with a virus I sleep all day which I don't do with PEM.

 

[TigerLilea]

@TigerLilea can I ask when your PEM starts? Is it delayed for 16hrs+? For me when it's a viral infection the PEM-like symptoms can start right soon after activity or within a couple of hrs.

Most times it is the next day, but if I have really over done it, it hits me the hardest about 36 to 48 hours later. My PEM symptoms are extreme exhaustion, whereas when I have a virus happening all I want to do is sleep.

 

[Sushi]

Here's my FWIW experience:

Am I right in thinking that exercise does not help NMH, just POTS?

I have NMH. Leg exercises improve OI very temporarily--I think because the leg muscles get engorged with blood and this puts compression on the veins. But this only lasts a matter of hours for me.

I think it's supposed to help uncomplicated OI in general. Though if looking at the cause rather than the symptoms, I wouldn't expect it to be helpful with any OI resulting from low blood volume.

 

[Valentijn]

Here's my FWIW experience:
I have NMH. Leg exercises improve OI very temporarily--I think because the leg muscles get engorged with blood and this puts compression on the veins. But this only lasts a matter of hours for me.

Actually that was my experience as well, though I only deliberately did it once, under the guidance of a moronic "relaxation therapist" at the fatigue clinic. It involved flexing muscles for a bit while lying down. Then when I sat up she exclaimed at how rosy and healthy it made my face look, and I did indeed feel somewhat better. For about 15 minutes.

Then I crashed for over two weeks and was charged for failing to timely (2 days ahead) cancel the appointments I consequently missed at the same clinic.

So yeah, that was a huge fail!