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

[Tine]

Welcome to the forums Tina, and YES, I believe your idea is an excellent one!

I've often visualized ME/CFS as a perverted board game, where participants are alternately propelled forward by their zest for life, only to be clawed back by the symptom constellation of post-exertional malaise (PEM) for days, weeks, or indeed months. It would do a huge service to patients if their loved ones were indeed to participate in a video or board game, where they see the dysproportionate and devastating effects of trivial "participating in life" activities on tomorrow's (next week/month's) function. Simple things like having an animated conversation with friends on the phone, having coffee with friends, heating up a prefab meal - and then suffering the consequences of having pushed too hard. I also think a similar strategy could illuminate why it is so important for us to live within our energy envelopes, and to LISTEN to, and respect the signals from our bodies so that we CAN get the absolute most out of our lives.

The interesting future for the whole GET/CBT psycholobby is the delicious and inevitable prospect that these so-called "scientists" have themselves been delusional for decades, imposing Kafka-esque "treatments" on patients who have been telling the truth all along. If anything, patients who stand their ground and listen to their bodies - even as they continually and judiciously retest those limits - are listening to cold, hard reason, while the medical world has been spinning off into madness for decades. It is those of us who intelligently adapt to PEM that are the sane ones... and indeed the net effect is that by respecting the limits of our energy envelopes, we maximize the potential richness of our otherwise limited lives.

Given how many of us have lost lifelong friends, family, colleagues to the incredulity triggered by this bizarre disease, education of loved-ones is a high-priority area for development. So YES to a video game!

Now for a request. Every video game has to have its bad guys. How about a patient-driven caricature of some of the key figures in this decades-long nightmare? You've GOT to make sure you richly characterize some of the nincompoop personalities of "CFS research" in this game. The Reeves', the Wessely's et al. Now THAT would be a wonderful source of humor!




thank you! in fact, it is going to be more of a simulation rather than a game, but there are challenges (like when you have to understand a letter and the sentences keep moving and disappearing, or you have to cook dinner but you have only vegetables and no strength to cut them), and there are some enemies (the GP can be an enemy, when you have to rest (lie down) in the middle of the street because you have no energy left people gather around with no so nice comments etc
I wish I could characterize the wesselly's (a whack-a-mole?) but this project has to stay completely a-political if it wants to have a shot. but perhaps I could do a very small game privately, any programmers here to help? with my Flash skills it's going to take a month..

 

[Tine]

Such an interesting concept coming from another Tina.

Although, how in the world would this be marketable where people would buy it, I don't know. It ought to be required of every healthcare provider before he graduates medical school.

The game ought to emphasize the frustration in my mind.

For example, going to the different doctors to try to find out what you have. One says you might be in menopause. But he calls back and says you aren't. He suggests taking estrogen during certain times of the month. That leaves the player with a choice, and then, whatever the choice, another problem comes. For example, say you continue taking the estrogen, but the symptoms get worse. You keep working. Then, suddenly you fall down a pit and these enemies (as figures) latch on to you and weigh you down so you can't go to your job. There is pain, confusion, fatigue. Etc. So the player goes to the doctor again. This time he says, "You have CFS or FM, but I don't treat it." Then, you go home. The player then has another option. He calls rheumatologists. But they say you have to wait three months to see one. Meanwhile, you have these enemies weighing you down. You can't go to work, so the money is running out. (Money you were given in the beginning of the game and which you get more of when you work.) So you choose to go to your local internist to ask them to check for MS, Lupus and RA, for exclusion. And he says, "Ma'am, you have depression." Then the player has to make a choice...... well, you get the idea.

But included in the game should be the idea of banking energy. That if you don't do anything, then you earn energy and the player must then choose how to use their little energy. Maybe it can be that the enemy fatigue goes away, only to return very quickly afterward. So when the enemy fatigue is away, the player must decide whether to use the freedom to work, play, or do housework.

Another frustration is that when you have energy, you don't have mental power. And when you have mental power, you don't have energy. So life for me, is just a frustration of trying to get something accomplished. Often I lose things. But then other times, I don't have energy.

Tina, sure would be nice if this could somehow be set up online. That way we could e-mail friends and families to play it. And, I would think some patient groups would be interested in having it on their website.

Good to meet another Tina. Are you a Tina Louise or Tina Marie. I am Tina Marie. (Most all people named Tina have one of those for middle name or the other.)

Tina

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.

 

[Tine]

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).

 

[Tine]

I I like parvo's idea of bad guys. It would be interesting for gamers to have to choose the care they receive, and the financial support that may or may not be forth comming with some of those options. Would a multi player game be an option? You could have some people be parents and another be the child with ME. Again choices are very different when a guardian is making them.

Imagine if a doctor could use it to educate family and friends. This could really change the support a patient receives.

.

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

 

[Tine]

A clock the player can't see, then boom back in bed.

It s exactly that: you finish the energy, boom, back in bed - I see this is a common experience

 

[Tine]

i love this game idea if done true to have real CFS is and not trivalised in anyway at all.

Im curious by what you mean by with discipline you recovered? Do you mean by that via pacing yourself much better and not pushing yourself too hard???? or do you mean you forced yourself to do things and by doing that became much better??? or throu forcing yourself throu GET??? If its the second things, that isnt how most of us experience CFS at all, and if so, you'd need to keep your own views of a psychological aspect out of the game idea.

// actually I shouldn t have put "with discipline", god knows why I got better.. I moved to the countryside, did meditation to learn to feel when the energy level was going down, and always always stay within the limit. That took a lot of forcing and I stopped taking any kind of medicine, tranquilizers, painkillers, only some vitamines. And I learned to embrace the illness, really love it (I know that's sick, it wouldn't last more than a few minutes), but that way all the muscles got really relaxed. Oh well, who knows.






Anyway i do love the game idea and the ideas the others have put here. I hope you include to idea of severe CFS/ME into your game eg dark room completely bedridden and struggling to comprehend language or speak... seizures, cant stand .... etc. 25% of those with CFS have quite severe CFS/ME.


I too would love it if you had "bad guys" in the game too.. to represent ones such as Wessely and his cronies, it could also have a couple of heros (to represent world class CFS experts).

// I totally understand why you would want to shoot Wessely :-( thing is, this project is to convince healthy relatives and friends that ME is horrible and "fatigue" is the kind you experience in a concentration camp, so they wouldn't get any jokes on Wessely, and probably they agree with him in the beginning. the goal is to change their mind.


A huge part of the battle with CFS/ME is getting a proper diagnoses... so i guess big part of the game should be based on that.. and how to get a diagnoses and the trouble involved in doing so. (i think i saw about 12-16 doctors before i finally found one who believed in CFS/ME thou things arent as bad as that nowdays). Once one finally finds a doctor and gets diagnosed... the next doctor saga is finding a CFS specialist who can help (as doctors dont seem to know what to do even once one gives a diagnoses). And even when you do find a CFS specialist, each one has his own areas of speciality which he focuses on with the illness due to whatever theory he has on it and often ignores the other theories and experiemental treatments on it.


// very interesting, thank you, will include it.



There needs to be some frustration in trying to put the pieces together in the game and finding the right people to help (heading in the right direction to be helped rather than being actually made worst by doctors who dont understand the illness.. eg by things such as graded exercise therapy or by being told to just ignore the symptoms by a psychologist who dont have a clue).

Many patients dont even get dressed as they are doing their best to conserve energy. (Im currently going quite well but I only get dressed once every 2-3 days.. my whole brain works around energy conservation to avoid getting sick).

There could even be a working part to the game..when the patient is in beginning stages of the illness....being forced to work but getting sicker in doing so (I smashed up two cars while being made to drive to work too tired)... leading to then having to fight for social security for disability payments.

The game to have a representation of reality.. needs to be filled with disasters/bad surprises, frustrating situations and an intense will for survival in trying to overcome all the battles involved.

best luck with it. Actually i do think this whole thing could make a very good game due to all the circumstances which can be put into it. You could also give clues but fuzzy ones so it has to be half guessed at what they are saying.. to represent issues with blurred vision or jumbled up word clues to represent having trouble thinking or in comprehending language.

thank you, I also think it could make a good game the more the challenges, the better the game..

 

[Tine]

Will it be available on Facebook?

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

 

[Tine]

Hmmm... I'm not so sure about this.

Games tend to have clear rules - with CFS, we really don't know enough to say what those rules are.

Games tend to be fun - CFS aint.

Some of the ideas mentioned here sound funny to those of us who already have an understanding of CFS, but to others the Kafka-style madness of it all is likely to be so frustrating that they'd have no reason to continue playing. I'm currently reading The Trial, and at no point have I thought "They should make a computer game of this".

//Very very good point - in fact, "game" is probably the wrong expression, "interactive experience" will be more suitable.
the point is to find a way to make healthy people stand the "kafkaesque madness" for long enough to understand how it feels, without withdrawing in terror or disgust.
There will be some "cute" elements, separated from the main character, that will make you smile, but it is not going to be "ah-aha" fun. It will have compelling moments, trying to fulfill tasks, but the overall experience should be quite dramatic (funny only for sick people, who see the irony and the verisimilitude)

Maybe there could be useful abstractions of CFS which could be illustrated through a computer game, but I don't think that something like a simulation would work (sorry to be a negative voice here).

// // //

negative can be productive ;-)

 

[Tine]

The fun is in the challenge
I think part of the fun is in the challenge.

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

 

[Tine]

The ones I have seen had small "ladders" but I liked your idea of the larger ones!


2. You manage to compete the 74 page application for Disabled Living Allowance

!

ahah that s funny :-D

 

[Tine]

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!!!

 

[IamME]

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.

 

[Tine]

. 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.

// actually to do things against the clock doesn't really convey the experience of ME, right? as in ME's case it's a battle lost in advance.

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

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

 

[Greg Crowhurst]

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

 

[V99]

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. 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.