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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Coyne: Why patients should not enroll in a clinical trial of video gaming treatment for CFS

Discussion in 'Latest ME/CFS Research' started by Bob, Jun 4, 2016.

  1. Bob

    Bob

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    England (south coast)
    Trial Registry:
    ACTRN12616000285459
    4th March 2016
    Active video gaming to increase physical activity in adults with chronic fatigue syndrome
    Dr Katia Ferrar
    https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224&isReview=true

    James Coyne's latest blog

    Why patients should not enroll in a clinical trial of video gaming treatment for chronic fatigue syndrome
    James Coyne.
    4th June 2016
    https://jcoynester.wordpress.com/20...aming-treatment-for-chronic-fatigue-syndrome/

    Other resources

    ME Australia blog
    South Australian Xbox ‘increasing activity’ trial

    Sasha Nimmo (Follow on Twitter here)
    2nd June 2016
    https://meaustralia.net/2016/06/02/south-australian-xbox-increasing-activity-trial-to/
     
    Last edited: Jun 4, 2016
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  2. Skippa

    Skippa Anti-BS

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    What a bunch of patronisng crap.

    "Maybe if we make exercise 'fun' then their magical symptoms will go away".

    Pssh. No need for a study, can confirm playing Wii messes me up and gives me PEM.
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Was playing Fallout 4, and now and then it would hit me hard now and then, and I'd sit there almost stupified for an hour or two, so currently just been reading for past day or two

    Had to give up playing Witcher 3 cause fast skillful way I play it was so draining, I always try and play on hardest settings of a game, new survival mode in fallout r roxks very difficult but being a sneaky bugger, and because of the VATS system in game it isnt so hard on my less than optimal.nerves and response time

    I find Civilization easier to play, as it's 2D not 3D, so less brain use etc though on Huge maps working out strategy etc can get wearing
    Oddly enough first person shooters can be easier than strategy gAmes, because fair bit of it's reflexive, thus less difficult

    Games ARE very good painkilers,distraction is much safer than morphine, but wasting money and time on something so bloody OBVIOUS that applies to nearly EVERY illness as a therapy, instead of specific biological research is CRIMINAL MALFEASANCE !
    Even should the study show it helps with pain and psychological problems caused by ghastly chronic long term illness, it will NOT DO ONE DAMN THING TO TREAT THE ACTUAL CONDITION

    it's like deliberately sidelining research on cancer, into psychology rather than biology
    It is criminal stupidity and negligence

    The only study like this that could be genuine and worthwhile, would be running brain scans of M.E. patients while they played computer games, to try and understand what parts of the brain are being affected by the illness and secondary problems it may cause

    I had to give up playing Everquest more than 10 years ago as they complex way I played required far too much effort in multitasking, and it wasnt just PEM, it would start terrible headaches
    Some folk may not think much of that, but it was a huge part of my SOCIAL life, I was very well known in the community and losing that is awful as any loss of self is
    Was offered straight up $3000 for my character back then could have bargained it way up maybe to $10000 or more but I chose not to, showing how valuable my character was in more understandable terms
    Didn't sell because there character was *me*

    Sigh, there's nothing was wrong with studying things in odd ways, science desperately needs more "thinking outide the box"
    But when a patient is dying you do not not waste time and effort on post trauma psychological care , you treat the injury or deadly illness FIRST

    Holy gods...you couldn't make this stuff up if you tried :p
     
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  4. Rick Sanchez

    Rick Sanchez

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    As someone who is still a gamer, I can basically make myself crash for an entire week by just playing too much for one day. This experiment could easily be straight up harmful for people with severe CFS / ME.
     
  5. sarah darwins

    sarah darwins I told you I was ill

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    Yep. Saved up and bought one thinking it would provide gentle exercise, only to discover that it's a sort of PEM machine. Turns out that sort of rapid reactive movement is the single worst kind for me (and a lot of others, I gather).
     
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  6. Rick Sanchez

    Rick Sanchez

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    The Witcher also caused a lot of headache at first for me, because I had never played the series before and had to get used to the new controls, and there was so much to learn. Once you get into the game though I find I can almost play it all day without feeling worse. I will admit I played on the normal settings for Witcher though. I also used to always play hardcore modes in games, but my body just can't take it anymore.

    This is also what worries me about the experiment. It is extremely draining and hard for the body to try and learn the basics of a new video game if you are suffering from CFS / ME. And I do not want to imagine how hard it might be for someone over 50 with severe CFS who has never played video games before to suddenly try and play video games.
     
    Last edited: Jun 4, 2016
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Rick Sanchez
    I've found that learning ANYTHING new be it a game, a book, software etc, is difficult and causes headaches :/
    The brain rewires itself when learning things, so I'm guessing M.E. makes that more difficult due to inflammation or other processes?

    Love the Witcher games but they are VERY difficult on higher settings, have to move a lot to avoid harm, mixed with potions, hexes etc real fast great fun, but wearing! :)
     
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  8. Justin30

    Justin30 Senior Member

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    I emailed this group as it was such a colossal waist of money to entertain this experiment.

    What needs to happen is that when studies like this are proposed people from everywhere with this disease whether you are from Australia, Canada, Britain, USA, Southamerica wherever need to email all the groups involved.

    The sooner MEAction and other groups inform us to takr action it must be done otherwise you get money wasted and muffied waters.

    Lets add more s*** studies to the pile that resemble PACE.

    I just dont understand so many people are sick there are so many people on this forum as well as supporters why do we let this slip by?

    I dont get it. Enough is enough.

    When are commercials and awareness going to be spread on the internet on youtube, TV, Magazines, Newspapers and when are yhe documentaries going to be on Netflix?

    We want change yet out efforts are starting but by not following what Disease groups have done in the past will not get us in the public eye.

    As far as I know only a small portion of famous people have had this....but why has a group never asked them to speak out? Like in a commercial or on youtube or anywhere else.....we need more help to blow the roof off all this Psychobabble BS.

    I am not saying out groups arent doing a good enough job but I think we lack the media presence that and other forms of media that will wake the masses up and say oh yeah I remember that person never came back to work or oh yeah my friends sister is beddridden or oh yeah that guy died after suffering for many years.

    Rant done.
     
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  9. Skippa

    Skippa Anti-BS

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    Exactly this x100.

    I have lost my superpower which was "read a technical book over the weekend and execute my awesome plan come monday".

    Now it's attempt to read a book over many months and then give up.
     
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  10. Rick Sanchez

    Rick Sanchez

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    I can relate too well. Just learning to play new board or card games with friends feels mentally painful.
     
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  11. alex3619

    alex3619 Senior Member

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    I used to play games on the highest difficulty setting. Then I had to move to normal. Now I play on the easiest, and have had to give up most of my old favourites because even on easy they still crash me. I am currently playing Fallout 4, I await No Man's Sky, and I just finished Dead Island today with another ME patient in co-op mode.It took us something like a year.

    I can cope with Dying Light in the early game, but its really hard later on even in co-op. I rate games now in how long I can play them. If I can only play a game for ten minutes without starting to crash, its goodbye game. Three hours is ideal. Some of the best I can play for up to six hours before starting to go downhill. That would include LOTRO and Empyrion right now, but this only applies on a good day in co-op mode.

    I like turn based strategy games as they allow me to control the pace. Real time strategy games I find I slow down to a crawl and I can cope.

    One of my favourite games (of I think 2014?) was Risen 3. Its great until a big boss fight ... that goes on and on and on. I cannot cope with that, and crash before I am done. Action games with lots of intense and prolonged boss fights crash me very fast, and I typically cannot play beyond the first big boss fight because I never finish it.

    In GTA5 I cannot do heists as the simple computer hacking minigame needed to qualify for heists lasts too long. Its not hard, but it crashes me.

    The physical activity of moving my mouse, and using a keyboard, is too much for me. I have to make accommodations to do it at all. Any further movement and my health would crash, and limit play-time to minutes every other day, at best.

    I would never ever sign up for this kind of trial, even though I have been in one study (years ago) on the social benefits of computer games (in this case second life, which is not exactly a game).

    Yet anything that raises my energy demand for more than five minutes starts to crash me. I need to operate under a certain level of energy. On a bad day my capacity to play games drops to zero, even easy slow games.

    PS I used to play board games with my friends occasionally. As my health got worse I had to give this up, the game would crash me fast and I was often near the crash point just from being with my friends.
     
    Last edited: Jun 5, 2016
  12. Firefly_

    Firefly_ Senior Member

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    I am super grateful that I am well enough to play my video games again (I'm freaking loving the new survival mode on fallout 4!) was losing my mind to boredom when I couldn't do anything at all. That being said, I tried witcher and just stopped early on out of frustration, too hard now to learn new controller patterns and stuff. I'm good to go with anything familiar pre illness, Bethesda games, borderlands, etc but I can only play on console now so here I sit with a high dollar gaming laptop gathering dust bunnies under my bed. Sadness. As far as the wii goes forgetaboutit lol, emptying the dishwasher is all the exercise I can take these days.
     
  13. Traskin

    Traskin

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    *waves* im the other ME person alex games with.

    the Wii is a nice system, but for someone with ME its a death machine. Geez i played one game for 5min, and was intense pain,and crashed for over a week. The simple yet repetitive motions needed are just too much. and i dont use consoles as im not a gamepad gamer. im old school, i need my mouse :p

    This study...ugh.. starts off with incorrect assumptions and seems to hope to trick patients with games,and then aha! your doing physical activity! dont you feel wonderful now! *palm to forehead* i can almost see the doctor doing an evil villian hand rub while writing it. aweful aweful.

    As alex said it took us ages to get thru dead island, because the type of game it is. While other games have more sustained action,this had enuf gaps in action for us to play short periods, but too much action for us to play long periods. so it took ages.

    The best games to play seem to be exploring/resource gathering style games that have periods of no action,and ability to avoid action when you want to. We could play Empyrion a great deal longer than other games, as we can spend long periods(days) gathering resources, to prepare for a 5min battle. Minecraft bieng one of the lowest impact games ive played. Also requires little brainpower, so can play it while severely fogged. Its my goto game when im bad off.

    Who you play with makes a big difference as well. playing with a healthy person is impossible. they want to move move move! no patients to wait. Where as playing with another ME person for example, they will have the understanding to play at a pace that works for both. And wont give you too hard of a time when you ride your horse off a cliff.... multiple times... :)

    im a big board game fan, and i have a game called tabletop simulator. lets you play all the popular board and cardgames online. unfortunately as rick mentioned,not only learning games is painful, but remembering how to play the game when your with others ready to go is near impossible. and healthy ppl have no patience to wait for you to remember how to play. so i never get to play it. grrr
     
  14. Skippa

    Skippa Anti-BS

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    This is why real time strategies (well real time anything) are a big no no for me. Too intense.

    I can't even visualise world maps in my head any more, I can't play any games :(
     
  15. Ben Howell

    Ben Howell OMF Correspondent

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    On a side note....great taste in games! :thumbsup: Witcher ftw.


    B
     
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  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Loved Withcher, Fallout and Civilization since first ones came out, old school! ;)
    They are games I hope that make people ESPECIALLY youngsters THINK

    Civ because it shows the reality of history commerce war etc, how folk with power are playing games

    Fallout because it's a warning based on many real things, Vault Tec's experiments are based off the real crazy Cold War stuff, etc

    Witcher shows how people let themselves become cowards due to fear and abuse those they think are weak or strange

    Listening to music from Skyrim just now, it's so damn beautiful! ;)
     
  17. Jeckylberry

    Jeckylberry Senior Member

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    Me too. Top down games like the older RPGs are better. And I'm ok with TellTale. Mainly P&C for me these days but there are some very good ones. I do dabble a little in the action games to my detriment. Loved Bastion too much to consider putting it down to recover. Call me Duke Pukem if I even look at a shooter. I do listen to them, however, and I know a fair bit about them due to my son playing them in the background and all the commentators he listens to which are very insightful and entertaining.

    It doesn't seem to be offering those sorts of fun, interesting, absorbing challenging games, though. looks more like those physio based ones like on the Wii where you play a cartoon style 3D of yourself. You probably won't even get a BFG or even a cool outfit.



    "Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is characterised by profound and debilitating exhaustion, resulting in chronic physical inactivity. The detrimental effects of physical inactivity, potentially related to inflammatory pathways (allostatic load) and the body’s ability to cope with stress, further compound the health risk of the disease."

    - careful... Debilitating exhaustion => chronic inactivity => worsening allopathic load => debilitating exhaustion is way simplistic. They would be more accurate to argue it is one of the concerns and challenges facing sufferers (they never seem to do this).

    "The aetiology of CFS/ME is unclear, and recent research has focussed unsuccessfully on individual inflammatory and immune biomarkers."

    - Really? It's not like they've finished investigating. And seriously, these investigations compared to yours??


    " Cumulative biomarkers such as the allostatic load index have stronger predictive power; enhancing our understanding of factors related to CFS/ME."

    - ...you hope.

    "To improve the health of people with CFS/ME and fill these knowledge gaps, this project will conduct a novel intervention"

    - intervention? That's a loaded word. Not supportive therapeutic activity? What, you... you're not actually suggesting this is going to... Ohohohho, how cute!

    "using active video gaming to explore the relationships between allostatic load and physical activity in people with CFS/ME.
    Aims
    1. To investigate if active video gaming is an effective management strategy to increase the physical activity levels of adults with CFS/ME
    2. To investigate the relationship between allostatic load and physical activity in people with CFS/ME
    3. To determine the feasibility and acceptability of active video gaming as a management strategy to increase physical activity levels in adults with CFS/ME"


    It's just another dumb paper for post grads and academics to put in their portfolios.

    I can see it now:
    new video game intervention for chronic fatigue.
    Sufferers of the debilitating CFS have found relief from their symptoms by playing video games. Researchers say playing these specifically designed games promotes exercise which alleviates stress, allowing the body to heal itself...
     
  18. Jeckylberry

    Jeckylberry Senior Member

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  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Want that played at my funeral (seriously)

     
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  20. Ben Howell

    Ben Howell OMF Correspondent

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    I love everything about this.


    B
     

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