Exercise Guidelines for Postural Tachycardia Syndrome, De Wandele, Low, Rowe, Simmonds, 2020

m.patriarca

m.patriarca

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Abstract
Exercise is an important component of the management of PoTS especially where deconditioning is present. In particular the long term effects of increased physical fitness such as increased blood volume, stroke volume and cardiac output, enhanced vascular pressure by enlarged muscle tissue and possible changes to the baroreflex are all thought to counteract orthostatic intolerance. Exercise needs to be carefully prescribed through careful clinically reasoning, gradation and monitoring, alongside other non pharmacological and pharmacological treatments. In particular people with overlapping pathologies such as Hypermobility Spectrum Disorder, Ehlers Danlos Syndromes, fibromyalgia, chronic fatigue syndrome or overtraining scenarios need to be carefully managed to avoid exacerbation of symptoms and to enable steady progress.
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Preview: https://link.springer.com/chapter/10.1007/978-3-030-54165-1_26

It is a chapter from an anthology. CFS is also mentioned in other chapters. I have quoted this chapter because of the recommendation for exercises. (Please forgive me, if something like this does not belong here, this is my first contribution).
 
"In particular people with overlapping pathologies such as Hypermobility Spectrum Disorder, Ehlers Danlos Syndromes, fibromyalgia, chronic fatigue syndrome or overtraining scenarios need to be carefully managed to avoid exacerbation of symptoms and to enable steady progress".

Enable steady progress for ME? :emoji_rolling_eyes: Please leave ME out.
 
Exercise needs to be carefully prescribed through careful clinically reasoning, gradation and monitoring, alongside other non pharmacological and pharmacological treatments. In particular people with overlapping pathologies such as Hypermobility Spectrum Disorder, Ehlers Danlos Syndromes, fibromyalgia, chronic fatigue syndrome or overtraining scenarios need to be carefully managed to avoid exacerbation of symptoms and to enable steady progress.
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Have no access to the chapter, but the abstract looks like the authors recommend some sort of GET, just in some cases accompanied by medications?
 
I am skeptical of these claims. I have not kept up with this literature recently but a number of years ago a neurologist who diagnosed me with POTS referred me to an exercise programme that was specifically designed for POTS. Being the vexatious zealot that I am, I went and read the primary literature on Pubmed. Needless to say, the study had a huge dropout rate and pretty modest improvements in the remaining participants. It all seemed very PACE-y to me.
 
Sid said:
I am skeptical of these claims. I have not kept up with this literature recently but a number of years ago a neurologist who diagnosed me with POTS referred me to an exercise programme that was specifically designed for POTS. Being the vexatious zealot that I am, I went and read the primary literature on Pubmed. Needless to say, the study had a huge dropout rate and pretty modest improvements in the remaining participants. It all seemed very PACE-y to me.
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From the few comments I have seen over the years, exercise does seem to somewhat help some POTS patients, but is usually so demanding that it's basically a full-time job to keep at it, at least for many. It doesn't make them particularly functional and the time demands basically seem to cancel most benefits. Seems about the same with fibromyalgia. It "helps" to keep the patients slightly less ill, just not any more functional.

The research and evidence frankly don't seem that much better than with ME, very little to no objective benefits other than keeping the patients occupied and struggling without significant help or support. The benefits are probably from the fact that POTS usually resolves itself within months, as we can plainly see with LC. Many have had severe POTS for 6-10 months that eventually goes away. I'd bet the vast majority of the "benefits" are the usual natural recoveries that the HCPs attribute to their work. As is tradition.

It's frankly hard not to conclude that evidence is completely irrelevant in evidence-based medicine. If there's science for it, EBM is unnecessary. If there isn't, well, EBM is simply useless and mostly serves to block real progress by discouraging research on the basis that there is (awful, misleading) evidence already what more could you possibly want?
 
The chapter in question is from "Postural Tachycardia Syndrome: A Concise and Practical Guide to Management and Associated Conditions" (link). I've just skimmed it; here's a sampling:
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Unfortunately, while there's acknowledgement that PEM can occur in response to exercise, there's no real consideration that PEM might represent an organic, non-cardiovascular limiting factor, only that patients "perceive physical activity as adversely affecting their condition in the short term".

Some of the other chapters may be of interest - I see Julia Newton has written a short one on CFS.
 
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