Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Gaming Activity Study - People with CFS

Discussion in 'Latest ME/CFS Research' started by AndyPandy, Sep 5, 2017.

  1. AndyPandy

    AndyPandy Making the most of it

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    http://www.unisa.edu.au/Research/Sa...eo-gaming-a-feasible-and-acceptable-strategy/


    "Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having Chronic Fatigue Syndrome (CFS) and do not currently play active video games?

    If so, you may be eligible to participate in our study titled: ‘Active video gaming to increase physical activity in adults with chronic fatigue syndrome’’.

    Improving the physical activity levels of people with chronic fatigue syndrome could lead to positive health outcomes. In addition, understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind CFS/ME.

    The study involves playing active video games every second day for 6 to 12 months, and slowing increasing the amount. At the end of the intervention, participants will be able to keep the active gaming console as compensation for their time.

    The study protocol has been developed by extensive consultation with the ME/CFS community. The study has been approved by the UniSA Human Research Ethics Committee.

    For more information and to register your interest please contact the Sansom Clinical Trial Facility on (08) 8302 1365 or email sansom.researchvolunteers@unisa.edu.au"



    This is a South Australian based study currently being advertised by Emerge on FB (which I find disturbing).

    I wish the limited research $ were not spent on this kind of study. :(
     
  2. AndyPandy

    AndyPandy Making the most of it

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    My comment:

    "I would rather the limited research funding for ME/CFS was spent on biomedical research and not GET style studies. When I don't have enough energy for activities of daily living that other people take for granted I fail to see how playing video games is going to improve my health or activity level. Some days I can barely hold my phone up. Time to get real about ME/CFS research."
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    Someone else has commented that it is "junk science" and Emerge should be condemning it, not promoting it.
     
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  4. AndyPandy

    AndyPandy Making the most of it

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    Just noticed:

    "At the end of the intervention"

    :eek:

    I associate "interventions" with alcohol or drug abuse or serious behavioural problems.
     
    Last edited: Sep 5, 2017
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  5. Murph

    Murph :)

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    I just emailed the address provided with this:
    --

    Just to let you know, recent research has shown that graded exercise therapy intervention for me/cfs can be dangerous for patients.
    Please look at the following publication:

    http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full


    Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys




    Keith Geraghty, Mark Hann, Stoyan Kurtev
    First Published August 29, 2017 Research Article
    Download PDF[​IMG] Article information
    [​IMG] [​IMG]


    Abstract
    Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling. Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%–35%), graded exercise therapy brings about large negative responses in patients (54%–74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%–82%).

    --Please postpone your research until this most recent study is provided to the ethics board.

    If you make a lot of vulnerable people sicker when the research was clear that that was possible, the ethical and legal ramifications will be tremendous.

    Thanks and best regards,

    Jason
     
  6. AndyPandy

    AndyPandy Making the most of it

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  7. Murph

    Murph :)

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    I've also sent this to a dozen members of the ethics committee.
    --
    I write in relation to the following study, which has received ethics committee approval.
    Pilot study exploring pacing to increase physical activity for adults with ME/CFS: Is active video gaming a feasible and acceptable strategy?
    The study plans to encourage ME/CFS patients to steadily increase exercise by use of computer gaming.

    Is the committee aware of recent research demonstrating that graded exercise therapies are harmful to patients with ME/CFS?

    Research establishing this effect is currently in print. It finds "graded exercise therapy brings about large negative responses in patients (54%–74%)"

    Meanwhile, the single major study in support of graded exercise therapy has recently been established as a case of dubious and potentially fraudulent research practices. At the same time, immunotherapy has been shown to be effective in treating ME/CFS, suggesting the disease may be one of autoimmunity.

    Please reconsider the approval granted to the computer gaming for ME/CFS research in light of current findings.

    If you make a lot of vulnerable people sicker when research made it clear that that was possible, the ethical and legal ramifications will be tremendous.

    Thankyou and best regards,

    Jason
     
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  8. AndyPandy

    AndyPandy Making the most of it

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    I was just about to post the link to Keith Geraghty's study on Emerge's FB page but it seems like they have taken this post down. It's disappeared from my activity log and I can't find it on their FB profile page.

    Can anyone else still see it?
     
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  9. alex3619

    alex3619 Senior Member

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    This is perhaps the third thread on this study. I think the last one was because they were trying to crowdfund the study, unless I am confusing it with something else.
     
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  10. AndyPandy

    AndyPandy Making the most of it

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  11. AndyPandy

    AndyPandy Making the most of it

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    I've had another look and I can't see Emerge's post about this study on FB anymore.

    Good outcome, if that's the case.
     
  12. Forbin

    Forbin Senior Member

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    It does seem to be the same as The University of South Australia study mentioned on this thread:
    New breakthrough research: video games to activate people with ME
     

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