Review Non-Pharmacological Treatment of Autonomic Dysfunction in Parkinson’s Disease and Other Synucleinopathies, 2023, Palma, Jose-Albertoa;Thijs, Roland

Discussion in 'Other health news and research' started by Mij, Sep 10, 2023.

  1. Mij

    Mij Senior Member (Voting Rights)

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    'Many patients with neurogenic orthostatic hypotension also have hypertension in the supine position. The BP can be extremely labile, resembling a volatile stock market chart.'

    Abstract

    Symptoms of autonomic dysfunction are prevalent and can be very debilitating, reducing the quality of life in patients with Parkinson’s disease (PD) and other synucleinopathies such as dementia with Lewy bodies and multiple system atrophy. Non-pharmacological therapies are key to effective management and are frequently used alone in patients with mild autonomic symptoms, or in combination with pharmacological therapies in patients with moderate and severe symptoms.

    This article focuses on non-pharmacological approaches. Our objective was to review the non-drug and non-surgical approaches to treating autonomic symptoms in patients with PD and other synucleinopathies, focusing on cardiovascular, gastrointestinal, and genitourinary autonomic dysfunction. Evidence supporting the effectiveness of non-pharmacological treatment for the management of neurogenic orthostatic hypotension, supine hypertension, constipation, and bladder and sexual dysfunction is available. High-quality prospective trials are scarce, yet some non-pharmacological interventions (e.g., physical counter maneuvers) can be evaluated relatively quickly on an individual basis and often seem effective. The emerging variety of clinical presentations advocates for a stepwise, individualized, and non-pharmacological approach for the management of autonomic symptoms.

    Often, the first step is to reduce or discontinue drugs that cause or aggravate autonomic symptoms followed by lifestyle measures. While non-pharmacological and non-surgical treatments are available and, in many cases, effective to improve symptoms of autonomic dysfunction in PD and other synucleinopathies, they are often overlooked. Large randomized trials testing and comparing non-pharmacological approaches are warranted.

    https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd230173
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Almost nothing that they propose is feasible to put through randomized trials, since they are never conclusive, simply do not allow for competent evaluations. They are basically dozens and dozens of small adaptations, which feature such doozies as "sitting, rather than standing", which when tested through standard clinical trials always yields uninterpretable results.

    The only good scientific trial is one where all other things are equal and the outcome is objective. We have seen the general quality of open label trials with subjective outcomes, they are fundamentally uninterpretable, unscientific and heavily biased.

    But they want LARGE trials. Because let's just jump to the useless stuff by making it expensive right out of the gate. Not only that, they want patients to fund the trials themselves, since I guess the biopsychosocial industrial complex / cult of randomized trials is not interested here? Even though they can find funding for an endless stream of small trials for conditions they don't even believe in, only large trials have that sweet sweet sunk cost that is so important to polish turds into cheap plastic imitation diamonds.
    And here is the main issue here:
    There is no such thing. Even after decades of obsessively doing small trials, then medium trials, then some large "definitive" trials, the conclusions in evidence-based medicine are always:
    1. There should be more trials
    2. They should be high quality
    Which I guess means the previous ones were low quality? Sure, true. But they never do anything differently. They only call for high-quality trials, but you can't have high-quality trials while continuing the illusion that any of this isn't a giant scam. This is an industry that easily wasted over 95% of what they do.

    And obviously:
    If that were true, this wouldn't be a simple anecdotal assertion. It would be backed by evidence. Because there has existed an entire industry dedicated to the sole purpose of doing such trials for the mere sake of doing trials. And they say that it's "key", which would imply high quality evidence.

    But there isn't even low quality evidence, because this is the classic failure of clinicians doing things because they think are worth doing, not because they amount to anything. This is alternative medicine, and that's the reason there are no high quality trials for any of this. Lots of these things make sense, but they can't be tested because they vary far too much between individuals, or are simply too arbitrary.
    People advocate for such things, such the authors of this paper. And they really do, without any actual reason for it, but they give their opinion, their aspiration, a passive voice. This is the classic "a bullet flew through a window", as if it just spontaneously happened to do that. The whole industry of so-called evidence-based medicine is just weak.
     
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