Exercise is considered a first-line treatment for POTS and is recommended regardless of presumed etiology. While the first studies of exercise in POTS framed it as countering deconditioning, there has since been significant debate as to whether deconditioning is a primary cause of POTS or is more likely to occur secondary to the disorder [
3]. Furthermore, research findings examining the prevalence of deconditioning in individuals diagnosed with POTS have varied greatly [
4,
5,
6,
7], with those investigating recumbent (vs. upright) exercise not finding evidence of deconditioning [
6,
8].
While there is not consensus about the role deconditioning plays in the etiology and pathophysiology of POTS, exercise is considered to be vital for its capacity to counteract orthostatic intolerance by increasing blood volume and left ventricular mass, and improving vascular compression and endothelial function [
5,
10].
And that's not based on anything. It's entirely wishful thinking, there is no evidence supporting this. And yet it is a consensus to make it a first-line treatment. This is the starting point they should be working on: why is this belief around? Not what patients think about them. This is not a serious evidence base:
Only a handful of studies have directly examined the effectiveness of exercise for POTS, finding consistent and significant improvements in orthostatic hemodynamics among completers of exercise programs [
11,
12,
13,
14]. Unfortunately, these studies reported high non-completion rates (i.e., 44–59%), highlighting the importance of patient adherence to a behaviorally intensive treatment such as exercise and raising the possibility that study results may be biased towards those with better exercise tolerance [
15].
Patients can tell them why, but even in a 'study' doing exactly that, they can't interpret the responses because they disagree with them. Even though the explanation is so simple a child can understand it, because it's not a problem of understanding, it's about beliefs and biases that have been imposed for decades despite obviously not delivering anything.
Avoiding triggers was rated as the most helpful intervention, with > 80% of respondents rating it as at least moderately helpful.
Triggers such as... exertion. Which is detailed several times in the responses.
Overall, participants reported believing that exercise is important in managing POTS, while confidence that regular exercise would improve POTS symptoms was more varied.
And where would those beliefs come from? Might they come from clinicians telling them those things over and over again? Obviously. So this is not about beliefs, it's about what goes on in those clinics, and whatever beliefs are going on are the experts', not the patients'. Plus, the idea of beliefs being relevant is just silly here. For the most part people don't have such beliefs about exercise, they're just not things they think about. These researchers are lacking a theory of mind here, not understanding that their own target of interest is very unlikely to be the same as that of their patients. We simply don't have the same priorities, which is a huge problem in itself.
The frequency of barriers listed is presented in Table
3. Symptoms, including fatigue, tachycardia, shortness of breath, and post-exertional malaise, were by far the most frequently listed barriers. Over 90% of responses included at least one symptom or health-related barrier, with fatigue as the most common, reported by > 50% of respondents.
If the illness is a 'barrier' to treating the illness, then it obviously does not treat the illness. Especially as the claim about exercise is precisely that it helps with symptoms. The participants tell them they are wrong, but they can't handle that, because their entire premise is fantasy.
Much of the discussion around barriers in both high and low exercise groups involved the impact of symptoms on exercise capacity. Many participants in the low exercise groups expressed believing in the value of exercise but struggling to engage due to their symptom burden and the dynamic nature of POTS. Participants discussed having days when they can not get out of bed, or have fainting episodes, gastrointestinal symptoms, or other severe symptoms. Others shared that they simply cannot engage in exercise at all, no matter how much they wish they could, due to overwhelming fatigue, post-exertional malaise, and/or exercise-provoked cardiopulmonary symptoms. Additionally, participants shared how comorbid symptoms, most frequently chronic pain, are additional barriers to exercise.
There is simply zero ambiguity about those responses. They are simple. They run counter to the popular narrative the researchers are trying to push.
Others shared that time and life responsibilities, including work, school, and/or family responsibilities, make exercising challenging, with some specifying that they must reserve their limited energy and physical capacity for these tasks. Additionally, participants shared that the cumulative burden of chronic illness management makes it difficult to prioritize or fit in exercise.
Zero ambiguity. If people have to do fewer activities of daily living to exercise, then exercise is interfering with activities of daily living and adds nothing on its own.
What we need from studies like this is to remove the influence of professionals. When professionals are involved they ruin everything, their biases are far too heavy and omnipresent and they essentially make the studies entirely about themselves and their interests. They influence the whole study, its design, interpretation and results. And it makes those studies entirely useless, because all they can bring is those biases. They bring nothing else to the table, only ruin, ignorance and misery.
