James Coyne: No to video gaming treatment research!

Discussion in 'Chronic Fatigue Syndrome (ME/CFS) Research' started by Merry, Jun 4, 2016.

  1. Merry

    Merry Well-Known Member

    At his blog Quick Thoughts, James Coyne today called on Australian patients to refuse to register for a study using dance and sports video games as treatment for ME/CFS. In a long post he details what is wrong with the study (let's start with the study's premise that exercise is just what ME/CFS patients need!) and ends by urging Australians to boycott not only to protect themselves but to inspire patients in the UK faced with the decision on whether to participate in Esther Crawley's new online CBT study.

     
    Last edited: Jun 4, 2016
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  2. bobby

    bobby Well-Known Member

    The fact that they want to use playing computergames as some sort of treatment just shows how little they understand about our illness. The concentration needed to play a video game, and the constant quick visual impulses would drive anyone into crash very soon.

    I just looked up what the game is about (if it's the same game James Coyne mentions in his blog - a game called Sports Rivals), and I find it extremely insulting to patients who are victims of an utterly debilitating physical illness.
     
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  3. Merry

    Merry Well-Known Member

    James called these "active" video games, which I understood to mean that players would be standing up and moving about in response to the games. Is that right? I have not played video games (unless a few goes at Pong and Pacman in the late seventies counts).
     
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  4. bobby

    bobby Well-Known Member

    @Merry it does look like it; which makes it even worse!

    https://en.wikipedia.org/wiki/Kinect_Sports
    in this video you can see how the game looks, and what you have to in order to play it. it involves a lot of standing up and keeping your hands above your head. true horror for most ME patients.

     
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  5. Merry

    Merry Well-Known Member

    Katia Ferrar, Ashleigh Smith, and Kade Davison are clueless.
     
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  6. Merry

    Merry Well-Known Member

    I like James Coyne's sarcasm:

     
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  7. Empty

    Empty Well-Known Member

    I had been thinking the same myself. Why aren't UK patients boycotting these ridiculous studies? I think that would be a great idea. If there is no shortage of fatigue patients who are desperate to participate, then it would be good for them to get on board with boycotting it too in the understanding of the unforgiveable harm it is doing to ME/CFS patients.

    It would be good in fact for the mental health charities to get on board in fully supporting ME/CFS as a physical not psychological disease that is not in need of CBT/GET.
     
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  8. bobby

    bobby Well-Known Member

    I think one of the problems here is that the patients are children. We all know that parents of underaged ME patients are threatened with sanctions from child protective services and thus bullied into taking part in this kind of BS. This happens all around the world and it breaks my heart just to think of what these parents go through. It's inhumane.
     
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  9. Empty

    Empty Well-Known Member

    It is extremely insulting.
    That is really hard to watch, all the jerky movements, noise, colour. That in itself is a torture.

    Supreme Victory, 1st. What rubbish. (Also rock climbers are not built like that).
     
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  10. Merry

    Merry Well-Known Member

    If patients are coerced into participating in research, doesn't that undercut the validity of the results and call into question the ethics of the researchers and the clinicians?
     
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  11. Empty

    Empty Well-Known Member

    I had thought it was just ignorance, given all the deliberate propaganda and confusion being caused plus a lack of community connection/knowledge.
     
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  12. Empty

    Empty Well-Known Member

    I couldn't help but laugh. 'Ethics'.

    This is a way to perhaps get engrossed in the game and do serious damage to the body by way over-doing it. I can see why they have chosen addictive video games as an experiment.
     
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  13. bobby

    bobby Well-Known Member

    it is just wrong on so many levels... Children are so vulnerable to abusers of authority, so these researchers should be extra careful in terms of ethics. I can't help but wonder if the focus of their studies is moving towards children because children are much more moldable than us, all grown up and 'vexatious'.

    They weren't able to prove their flawed hypothesis through us, so now they're picking on the most vulnerable. They'll stoop to that level rather than admitting that they had the wrong end of the stick all along.
     
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  14. Merry

    Merry Well-Known Member

    I'm trying to remember what ME/CFS research has been done on children in the UK. I see that a study on the Lightning Process as treatment for young people was published in 2003. Was this in the UK? Another study, SMILE, is going on right now at Bristol University.

    Can someone point me to information about parents in the UK being coerced into enrolling their children into ME/CFS research?
     
  15. bobby

    bobby Well-Known Member

    @Merry

    There's the FITNET research (from the Netherlands I think): http://solvecfs.org/recovery-by-internet-cbt-a-closer-look/
    The NHS in the UK has just started a follow up study on this (chief investigator Esther Crawley). They got almost a million pounds to do this!: http://www.nets.nihr.ac.uk/projects/hta/14192109

    I'm afraid it's very difficult to prove actual coercion, but I think this document from Tymes Trust gives a good idea about what the reality is of being a parent of a child sick with ME.
    http://www.meassociation.org.uk/wp-content/uploads/colby_j.pdf
     
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  16. Merry

    Merry Well-Known Member

    Thank you, @bobby, for looking up and posting information.

    I was aware of the coercion of parents to see that their children followed prescribed treatments. But I had not heard about coercion to participate in research. I'm not saying that it hasn't happened or isn't happening (I have trouble picturing what goes on in clinicians' offices in the UK and how power is imposed -- could be subtle) , but I hadn't heard about it until today, in this thread. Perhaps you could explain to me how patients become research subjects. Is the clinician's office the gateway?

    But don't feel obligated to answer. You've probably already used up quite a bit of energy today on this thread alone.
     
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  17. bobby

    bobby Well-Known Member

    I have no idea @Merry ! :) I just go with what I learn and read online. I imagine it would be really hard to prove anything, but I would expect it to be subtle, as you say. I have read quite a few testimonies from parents (not just in the UK), and it seems that when you threaten them enough with investigation, many of them will do most anything the authority asks of them. But testimonies are no real proof of course...
     
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  18. EYAKLLE

    EYAKLLE Guest

    Retrovirus
    It s over for these people
    Over
     
  19. Merry

    Merry Well-Known Member

    Sorry to put you on the spot. I obviously have too much time on my hands. You are a good sport, @bobby.
     
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  20. Merry

    Merry Well-Known Member

    I hope over.
     
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