1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Project for a serious game on ME/CFS - please send some feedback

Discussion in 'Action Alerts and Advocacy' started by Tine, Aug 7, 2010.

  1. Tine

    Tine

    Messages:
    14
    Likes:
    0
     
  2. Tine

    Tine

    Messages:
    14
    Likes:
    0
    Thank you Tina! actually I am a Valentina. the thing about needing both energy and mental power, I wanted to put something like that. And yes, the game is all about energy management, you have to stay within your energy levels, and when you are without energy you cannot talk, move, and have to lie down; in the house you are just redirected to the sofa or the bed, but when that happens in the middle of the street, that causes problems..
    about choice: among your tasks you have to do something to cheer you up every day to prevent depression, to explain healthy people why one can say that has no strength to go to work but spend 2 hours watching a movie (occasionally).
    The diagnosis riddle, that's a very nice touch - will include it :)
    I already put something about the GP: when you go to the doctor and the doctor tells you "it's all in the head", if you insist too much and the doctor is really stubborn you could be "taken away"; also, getting angry takes energy, so it is better to go find a different doctor than to argue to no end.
     
  3. Tine

    Tine

    Messages:
    14
    Likes:
    0
    caledonia: in fact there are some levels at the beginning you can choose from, corresponding to various degrees of affection: mild, severe etc and when you choose the equivalent of "severe ME" and you start the game and try and move, basically your avatar does not move at all - only turns a little bit in the bed. (that's so very not fun, but it should be enlightening).
     
  4. Tine

    Tine

    Messages:
    14
    Likes:
    0
    Thank you - multi player is not possible for budget issues, and also bad guys are at the moment not very likely in the project (I am trying to make this as badass as I can, (many educational games are horribly boring) but it is going to be more of a simulation, without "enemies" - but maybe things will change) - yes, the goal of this project is to change (a tiny bit) the support a patient receives. I am not sure the guardian thing would it be possible, but it is a very nice idea, thank you :)
     
  5. Tine

    Tine

    Messages:
    14
    Likes:
    0
    It s exactly that: you finish the energy, boom, back in bed - I see this is a common experience :)
     
  6. Tine

    Tine

    Messages:
    14
    Likes:
    0
    thank you, I also think it could make a good game :) the more the challenges, the better the game..
     
  7. Tine

    Tine

    Messages:
    14
    Likes:
    0
    Hi! in fact FB was my first idea, but for research reasons it will have to be on an individual website, at least for a couple months - I am trying to see the compatibility between the two. It will have a profile on Facebook, anyway
     
  8. Tine

    Tine

    Messages:
    14
    Likes:
    0
    // // //

    negative can be productive ;-)
     
  9. Tine

    Tine

    Messages:
    14
    Likes:
    0
    That s exactly the point. There is a "movement" that since a few years wants to use video games for education, advocacy etc http://www.gamesforchange.org
    only many educational games miss that point, are extremely boring, nobody learns anything and everybody loses. My research project sustains the view that games should be fun (or compelling, entertaining, absorbing, "fun" is a relative phenomenon). But yes, humor is important
     
  10. Tine

    Tine

    Messages:
    14
    Likes:
    0
    ahah that s funny :-D
     
  11. Tine

    Tine

    Messages:
    14
    Likes:
    0
    some links

    by the way, these are some links to some projects that have been realized to illustrate or help in some ways with various illnesses:

    a game on Alzheimer is very close to what I am trying to do, but it is still being developed, so I can't show it -

    some about cancer (although they are more about learning to cope and anger management):

    http://www.re-mission.net/ they had a lot of money, it's the best health game yet

    http://www.makewish.org/site/pp.asp?c=cvLRKaO4E&b=64401 ben's game - a game conceived by an 8 years old with leukemia, his doctor managed to find somebody to actually do it - it's for children

    about diabetes:

    http://office.ranj.nl/grip/ (it's in Dutch unfortunately, but you just follow the arrows) (this I found borderline offensive, because it's a "game" kind of game, but in the end I could feel pity for the character, so proud and strong and yet so handicapped, which is good)

    http://www.escapefromdiab.com/ informative - fun oriented

    http://www.glucifer.net/birman.html (unfortunately in French)

    for learning correct food habits

    http://www.fatworld.org/ this is 100% game - the challenge is to make something similar to stimulate compassion and empathy (that is the topic of my research project)

    learning about aids

    http://www.freedomhivaids.in/PathOfLife.htm

    http://www.avert.org/hiv-aids-game.htm

    http://www.freedomhivaids.in/BoardGame.htm
    http://www.edudice.nl/en/game/format.html

    this is very funny, on the effects of drugs
    http://www.xperiment.ca/ and it manages to be fun and instructive

    So, yes, fun is going to be central - thank you SO much all for this feedback!!!
     
  12. IamME

    IamME Too sick for an identity

    Messages:
    110
    Likes:
    5
    Unfortunately the OP's mentions of "fatigue" don't give confidence. Any advocacy has to emphasise what's different between ME and fatigue, otherwise it's not ME.

    I've thought about a board or text adventure style game myself but not sure it's a good idea. So many things could go wrong. But if it was being done it would have to be a vitrtually impossibly frustrating game with some relatively unexciting prize like getting welfare or finding a half decent doctor. Moves would be taken against the clock, their would be snakes-and-ladders style forfeits, the board would rearrange itself spontaneously, the real world evironment of the players would used to negatively externally affect progress etc.

    When I think of the marketing of an official game and the pitfalls there ("Play CFS!" "You don't have to be tired to play!") I'm not sold.

    I think I agree with Esther that it makes too much much "fun" of what isn't and should never be associated with "fun". That will be too easily exploited in the hands of the bigots and jokers.
     
  13. Tine

    Tine

    Messages:
    14
    Likes:
    0
    Actually the game should be free and "informative", so it won't really have "marketing", just diffusion on social networks and medical networks: "If you have a relative or friend who doesn't understand ME, make them try this". It should be in an educational frame, like many similar games for Aids, cancer, alzheimer, cystic fybrosis, alcoholism, all things that normally aren't associated with fun too.

    And the point is to keep the message aimed to the average population, and ignore the extremes of "bigots and jokers", those are going to exploit anything anyway; I don't see that many initiatives to make ME better known, so my impression is that every bit counts.

    Would you (as potential public) feel more reassured by the endorsement by some well-known member of the ME research scene, or possibly some association, any in particular?
    I know there is debate going on even with associations, because some of them are said to divulge misleading information, so I would like to know how to make this project more trustworthy without having to sacrifice vivacity and originality (that have nothing to do with lack of respect or "poking fun", and have all to do with fun= enjoying an immersive experience, like a good movie).
    In case you are interested in the debate on games and how they are spreading to all levels of society, and how it is in the interest of "serious" people to maintain a good standard in ethical values by making also "serious" games, please watch this TED talk of Jane McGonigal: "Gaming can make a better world"
    http://www.ted.com/talks/jane_mcgonigal_gaming_can_make_a_better_world.html
     
  14. Greg Crowhurst

    Greg Crowhurst

    Messages:
    3
    Likes:
    2
    From my experience of caring for someone with very severe ME , a game would be surreal , involving mega decisions like whether or not to spend the day in bed or on a chair, how to cope with being touched, but requiring help. How to get to the toilet. It would involve choosing which symptoms to try and cope with , which ones are simply screaming in pain . It would involve the constant battle from moment to moment not to despair.

    You'd have to get into the inner spaces to show it. The light, the sound, the chemical sensitivities.

    The throbbing, itching , crawling sensations, that never stop, day and night.

    But yes, yes : I can see it !! You could really illustrate the complex reality of the disease - the multiple systems of the body that are affected. And of course on a wider level, the intense political struggle, the never ending fight for tests and treatments , the occasional victory : test results, like mitochondrial dysfunction that actually show something, the domination of the Insurance industry and the psyches.

    And the living hell that is brain fog.

    There is a lot going on in that chair , day after day, that could really be unlocked through game technology.

    On another level though, this discussion has really shown up for me, the different worlds that the more moderately affected and the severely affected occupy. In Severe ME there is just no such thing as an "energy bank", "energy management", the effectiveness of pacing : we are talking less than 20% functional ability, a completely bizarre reality and a level of gross physical and neurological dysfunction that is far beyond comprehension to anyone who has not been there.

    Here's the thing : you know what I think a game should illustrate ?? The mother of all battles to get "ME" separated from "CFS" !!! Why on earth anyone refers to "CFS" , such an insulting term,one that simply plays straight into the hands of the corporate lobby, time and time again, is baffling , is quite beyond me . Am I missing something ? Are the issues not clear enough - yet ?? It just guts me .

    The battle to get ME separated from CFS , surely is the greatest struggle we all face - and that is no game.

    Well done Tine - there is no question, what you are thinking of developing is just right to graphically illustrate the horror that is ME.
    Brilliant idea !! Keep at it :

    "Despite what we've been taught, we don't have to be rich, famous or distinguished to make our dreams come true."
    Sharon Cook & Graciela Sholander, from the book Dream It Do It

    As for me, I'm on the second year of a web-design course. I've learned the HTML and CSS , now I'm hard at work studying JavaScript and right-out-of the-box HTML 5 (very exciting indeed) . I really do believe in this ; my vision is to get to the stage - hopefully by the beginning of next year, where I can begin incorporate cutting edge interactive technology , such as Tine is suggesting, into my website Stonebird, : www.stonebird.co.uk
     
  15. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Greg
    That's pulled something out of the back of my mind. The real difficultly of a game like this would be where to pitch it at. You don't want anyone leaving under the impression that it never gets really serious. I think that should be a real priority, to make sure you do show how bad it is for those severely ill. And it is probably best if from then on you never improve, because as Greg says, when it's that bad, you have no energy bank. Let the doctor then explain that some people don't become that severe.

    I love the idea of a CFS v's ME game.:D I think the only reason people use the term CFS at all, is because it's the only diagnosis you can get in the USA. But really we are only talking about ME. There truly is no such thing as CFS.
     

See more popular forum discussions.

Share This Page