Review The use and effectiveness of exercise for managing [POTS] in young adults with joint hypermobility and related conditions:... 2024 Peebles et al

Discussion in ''Conditions related to ME/CFS' news and research' started by Andy, Feb 26, 2024.

  1. Andy

    Andy Committee Member

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    Full title: The use and effectiveness of exercise for managing postural orthostatic tachycardia syndrome in young adults with joint hypermobility and related conditions: A scoping review

    Highlights
    • Little research on exercise for POTS management in joint hypermobility conditions.
    • Endurance/resistance exercises, graduating from horizontal-to-upright is effective.
    • Individualise exercise for people with POTS, joint hypermobility, pain and fatigue.
    • Specific modifications should be guided by orthostatic intolerance and symptoms.
    Abstract

    Purpose
    Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. It may occur in isolation, but frequently co-exists in individuals with hypermobile variants of Ehlers-Danlos Syndrome (EDS) and related conditions (chronic fatigue syndrome [CFS] and fibromyalgia). Exercise is recommended for non-pharmacological POTS management but needs to be individualised. This scoping review explores the current literature on use and effectiveness of exercise-based management for POTS, with specific focus on individuals with joint hypermobility and related conditions who experience hypermobility, and/or pain, and/or fatigue.

    Methods
    A systematic search, to January 2023, of Medline, EMBASE, AMED, CINAHL and the Cochrane library was conducted. Studies that reported on adolescents and adults who had been diagnosed with POTS using standard criteria and underwent an exercise-based training intervention were included.

    Results
    Following full-text screening, 10 articles were identified (2 randomised control trials, 4 comparative studies and 4 case reports). One comparative study reported a small subset of participants with EDS and one case report included an individual diagnosed with CFS; the remainder investigated a wider POTS population. Overall, 3 months of endurance followed by resistance exercise, graduating from the horizontal-to-upright position reduced POTS symptoms and improved quality-of-life.

    Conclusion
    The findings highlight a paucity of higher-level studies documenting exercise for POTS management in people with joint hypermobility and related conditions. Results from the wider POTS population demonstrate exercise is safe and effective. Large, well-designed clinical studies exploring exercise for POTS management adapting to meet the complex musculoskeletal and non-musculoskeletal features of symptomatic joint hypermobility are needed.

    Open access, https://www.autonomicneuroscience.com/article/S1566-0702(24)00010-9/fulltext#
     
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  2. Andy

    Andy Committee Member

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    "Exercise-based management of individuals with hypermobile variants of EDS and related disorders (i.e., CFS, and fibromyalgia) needs to be cognizant of the impact of pain, fatigue, post-exertional malaise (PEM), and broader dysautonomia affecting gastrointestinal (e.g., functional motility disorders), thermoregulatory (e.g., temperature intolerance) and urinary (e.g., incontinence) systems (Wise et al., 2017; Kizilbash et al., 2014; Thieben et al., 2007; Vollestad and Mengshoel, 2023) All of these factors compound the impact of POTS on individuals quality of life (Joyner and Masuki, 2008) and may contribute to a cycle of exercise intolerance, avoidance and deconditioning (Johnson et al., 2010; Parsaik et al., 2012) further exacerbating POTS symptoms. To the best of our knowledge details of exercise-based POTS management have not been explored in a systematic manner in these subgroups."
     
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  3. Sean

    Sean Moderator Staff Member

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    and may contribute to a cycle of exercise intolerance, avoidance and deconditioning

    If it doesn't work the first 1473 times, try it again. Just have to believe enough that it will work.

    Faith-based zombie science, par excellence.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Damn I need to find that image again.

    How did it go? "Intervention X for condition Y with variant Z for sub-group A-W" and they just run through the combinations in endless ways.

    Even though they are all fully generic and the entire ideology is all about ignoring all the actual details and making everything as generic as possible but also everything is 'bespoke'. All on the idea that exercise is good for everyone, but somehow even though it's good for everyone, they don't know if it's good for condition X's many possible generic sub-groups, but then any such benefit would just be generic and would be impossible to determine if it affects this condition at all, but even though it doesn't they have to 'test' it again and again.

    Even the evidence for benefits in POTS is of the same level of quality as for ME. And in complete opposite to scientific research, where positive preliminary evidence is used to justify more research on it, the lack of positive preliminary evidence is used to justify more research in the same old cycle of "we don't have enough evidence for X, therefore we should try X more to see if it works", based on nothing at all.
     
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