Feasibility and Acceptability of a Home-Based Sensory Perception Training Game for Patients with Fibromyalgia: A Pilot Study 2022 Demoulin et al

Discussion in ''Conditions related to ME/CFS' news and research' started by Andy, Nov 10, 2022.

  1. Andy

    Andy Committee Member

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    Abstract
    Objective: The primary aim of this pilot study was to test the feasibility and acceptability of a prototype of a novel digital system enabling somatosensory training at home by means of a gamified mobile application in patients with chronic pain. The secondary aims were to test the effect size of the intervention on clinical outcomes to power a subsequent randomized controlled trial.

    Materials and Methods: We conducted a pilot randomized controlled trial in patients with fibromyalgia. This was an 8-week crossover study, which included a 4-week somatosensory training phase (daily use with the novel digital system) and a 4-week control phase (no use of this new system) in a random order. Feasibility was tested by objectively measuring the adherence and retention rates. Acceptability and changes in pain and disability were measured through data from subjective questionnaires.

    Results: Thirty-five patients completed the study. The satisfaction questionnaire indicated high training enjoyment, ease of use for daily training and interest to continue to use the intervention after the study. The adherence (93%) and retention (94%) rates were high. The effect sizes were moderate for pain intensity (0.57).

    Conclusion: The novel gamified technology for remotely delivered somatosensory training is feasible in a group of patients with fibromyalgia, and results in high engagement, satisfaction, and adherence. A subsequent clinical trial with the final version of the technology platform, including a longer training with more sensory training tasks and a bigger sample size is necessary.

    Paywall, https://www.liebertpub.com/doi/full/10.1089/g4h.2022.0079
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    I am genuinely not sure which of this or NFTs is the most ridiculous thing happening right now. Or maybe this is more akin to BS jobs where millions of people are working to produce large number of useless tchotchkes simply because our economic systems demand people to do something, anything, even if it's bad for the world, to have an income.

    It's disturbing seeing over time how almost all EBM is basically "here's a black box with stuff in it that does things, we're not showing you what's in the box, you just have to trust that it does what we say it does" and no one seems to care how the actual substance that goes into those things is never, ever, not even once, examined by anyone. In the end they are all laundered through systematic reviews with all details removed and the black boxes loosely categorized by shape or whatever, details that aren't even in the papers themselves, as if the substance doesn't even matter. Which is clearly the case.
     
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  3. RedFox

    RedFox Senior Member (Voting Rights)

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    I don't live with chronic pain, but I imagine that people who do want most research funding to go towards fixing their pain, not dealing with it.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    I have little doubt that the people behind this trial think this is what they're doing.

    The state of things. It's quackery all the way down now.
     
  5. shak8

    shak8 Senior Member (Voting Rights)

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    My FM guess is that the 'somato-sensory' training is the usual : focus on other parts of body not experiencing pain. Or really feel the pain in as minute a way as possible, experience it fully. Either way, you still have the pain.

    But alas, don't have access to more than abstract.
     
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  6. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    What I think is horrifying about the chronic pain community is that we have many effective drugs that can ease them of their pain. Unlike ME/CFS there are effective treatments, multiple ones to try and rotate through to see which works the best with the least side effects. Yet the BPS cabal has been busy the last 20 years saying that meditation and CBT fixes chronic pain and so increasingly doctors are withdrawing treatment and ignoring new sufferers, its a big part of how the opioid crisis has come about. Now we have large amounts of chronic pain sufferers having to buy illegal drugs so they can get on with their lives. Of course they want the underlying cause treated but you don't have to speak to them long to find out that they are also being denied drugs that do work to rid them of the pain. This BPS crew isn't just holding ME/CFS research back they have taken the Chronic pain community back to the dark ages and the evidence that the "new" mental treatments don't work is all over chronic pain community forums.
     

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