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

Hello everybody,
my name is Tina, until one year ago I have been severely disabled for almost five years by ME/CFS. After years of discipline I recovered, although my life is still somehow limited, and, as right now I am working in research on serious games (video games with a purpose), I am trying to get a bit of money from my research group to create a video game about chronic fatigue as part of my research project, a video game to explain to friends and relatives of sick persons what it really means to "feel so tired".
Before embarking in the long process of fund hunting, I would appreciate some feedback about this idea.
Do you think it could be actually useful?
The game should be an online game, accessible by everybody, and will depict one day in the life of a CFS sufferer, the common hardships, from getting dressed to thinking straight, the difficulties with healthcare and co-workers, and it should teach the basics of energy management and should suggest ways in which the healthy can help the sick.
There are similar games being made for cancer and alzheimer, but those illnesses get better press then CFS so it is easier for them to get money :-(
Can you tell me what you think of this idea?
Would you think such a project would be useful to give more visibility to CFS as a physical disease and as a patient (how I dislike the term "sufferer", like we don't deserve to be called "patients") would you suggest such a game to family and friends?
Any comment would help, really.

all best!
Tina

Yes!

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!

Bottom line Tina - yours is a GREAT idea! Given our sheer numbers, I wouldn't be surprised if you could get angel investors to support you. Go for it!

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

I would echo parvo's enthusiasm for the project. Really fab idea.

It's impossible for others to comprehend the management you have to have over your own life. Spend some there, loose more here. Many of us have a good idea how awful it must be for someone who is severly I'll, but to communicate this through a game is surely the next best thing to having the disease. 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.

It's such a great idea. I can't wait to see it. Imagine if a doctor could use it to educate family and friends. This could really change the support a patient receives.

I love it.

The crux of the whole issue

V99, you nailed what is really at the heart of this.

I like it. Maybe you could have different levels of play like other games. The sicker the game patient is, the more difficult the level of play. You could base it on Bell's Disability Scale.

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

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.

gee.. i think ive had this illness far too long, im suspect of everyone :/
........

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).

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.

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.

Will it be available on Facebook?

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".

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).

I had also wondered-- " what would make it fun enough to continue playing it?" Maybe add a forum (or a few) of smart, supportive pals... Don't want to be discouraging, though. It is an intriguing idea.

The fun is in the challenge

The fun is in the challenge
I think part of the fun is in the challenge. This is such an inordinately challenging illness, with so many pitfalls, that the visuals for a videogame could be SO much fun. All those "paint-by-numbers" physicians terrified of thinking independently; the delusional and malignantly narcissistic psycholobby; even caricatures of well-meaning relatives could be incorporated into the game - with their ludicrous recommendations that former jocks walk around the block to "boost our confidence".

Gallows Humor is a tried-and-true coping strategy!
Think of the ages-old antidote to battle fear. How do soldiers, battle medics, or Intensive-Care Unit physicans, or SWAT team members survive mentally? Gallows humor. Black humor is a rich tradition in challenging environments, and I wouldn't see this game as depressing at all - at least not for us patients that have accepted the reality of our current constraints. In fact to your run-of-the-mill-videogame-addict (anyone under 20, and indeed many over 20!), this could present SO many great challenges that would make the game interesting. And the cool thing for us patients is that we might well kick butt at it, because we understand the nuances of what can bring on a crash.

The Achilles Heel of malignant narcissists: being ridiculed
The time has come to cast away "Eminence-Based Medicine" - or the cult of revering "peer-reviewed" garbage research from the psycholobby on "CFS" in esteemed journals - whilst the old-boy's network pats themselves on the back for preserving the medical status quo. The key to a videogame would be to go ALL OUT on humorous caricatures of the nefarious personalities in the ME/CFS field to get the best leverage and gallows humor effect. OMG - this could be so much fun! And it might well do a huge service in developing empathy for this damned disease, whilst raising awareness of the many logistical hurdles that we could use help (or understanding) with as we fight for meaningful treatment. Who knows, patients might even gain some credibility, as others come to grips with just how motivated and careful patients need to be in order to live life to the "fullest" - within the mammoth constraints of PEM and ME/CFS.

And oh boy - do we ever have a rich legacy of heroes and villains. It's high time they were respectively lampooned or championed! Suffice it to say - I want to play!

I'm afraid I'm with you Esther on this. How can a game not trivialise ME? There already is too much trivialisation of ME. I don't think our obsession with energy conservation will ever be understood by those who don't have ME. In the long run, I think it will be better to focus on those symptoms like cognitive dysfunction, brain processing difficulties, memory loss, immune dysfunction etc. Please rethink your support for this before you push tina too far down the track.

The cognitive dysfunction can be part of the game also. I'm sure it will be a very good additional tool to use for educating doctors, family, friends. It will be up to those who use such a device to explain to users that it is by no means an entirely realistic experience. Obviously right now it wont help, doctors wont be able to use it, but in the future this would be an excellent aid.

I don't know if this would be use ful at all. In my house we have a running joke on "secondary gain", that is we have a laugh about what I am gaining by being ill in any particular situation.

I've also seen a few "snakes and ladders" type games built around ME. The board contains typical "challanges" and then a dice is rolled to determine outcome.

It would never be able to communicate exactly how the disease is, or even come close to it. But it could allow people to begin to question their own beliefs about the disease, and make them aware of issues they would never have contemplated before. It would only be part of an overall education process for them. So it is still a good idea.

Re Snakes & Ladders - I think we can all see what or who the Snakes are, but are there enough Ladders in an ME game to keep people encouraged - or should we just create some fantasy ones based on our hopes for the future?

Here are a few possible ladders to encourage the players -

Gaining the support, interest and scientific curiosity of world class researchers like Dr Mikovits, Dr Lombardi, Dr Ruscetti and Dr Singh are definitely ladders. :Retro smile: :victory:

Having the brainwave of an idea, know how, impetus and courage to set up the WPI, specifically the fact that it is a facility dedicated for neuro-immune disease that recognises the seriousness and physical basis of the illness - big ladder on the board. :Retro smile: :Retro smile:

Having Senator (or a billionaire??) funding to set up and run competent world class research and patient facilities = ladder :Retro smile: :Retro smile: :Retro smile:

Several positive replication studies - with 'I told you so' printed at the end! plus several positive newspaper article validating the serious nature of the illness and demanding the safety of the blood supply (with a patient rep saying 'We told you so' at the bottom - yep all ladders. :Retro smile: :Retro smile: :Retro smile: :Retro smile:

The CDC is dismantled, & all dangerous charlatans & GET/CBT only :Retro mad: promoting individuals jailed for putting patients lives at risk - Do NOT PASS GO, DO NOT COLLECT $100, GO STRAIGHT TO JAIL - but definitely a ladder for an ME player! :Retro smile: :Retro smile:

Dr Mikovits and team discover cure for XMRV and it is astonishingly cheap, and avaiable to all ME patients worldwide! - Ladders Galore :Retro smile: :Retro smile: :Retro smile: :Retro smile: :Retro smile:

The professional body for regulating and educating Physicians and related health professionals issues an urgent update clarifying that ME is now a fully recognised, fully fledged physical, contratactable infectious but easily treatable illness and physicians can now actually treat patients with real medicine + with compassion and integrity - go to final square - YOU ARE A WINNER!!!!!! :victory: :victory: :victory: (Couldn't find a champagne bottle with cork flying out, so used balloons!)

Drawback - I can't see normal healthy people being able to cope with the setbacks though ...

Someone in my family recently injured their foot in a skiing incident and couldn't leave the flat for a week. They were beside themselves with frustration in - yes - just 5 days! Now imagine you can't get up each day, or wash, or do your own shopping, or cook, or tidy up - let along work - you have almost no money and everyone thinks you're faking - cos the doctor thinks so - I don't think any healthy person could cope with even the thought of a board game like this, let alone see the need to put themselves through it - much as we all think it might be 'GOOD FOR THEM'!!! (Where did you get that stick RustyJ - think I need one to beat a few people over the head!)

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

For examples these were the types of ladders I saw (UK)

1. You go to see your GP and they have heard of ME - and don't think that it is a psychological illness
2. You manage to compete the 74 page application for Disabled Living Allowance
3. A wealthy relative buys you an electric wheelchair
4. Your Christmas allowance arrives from the DWP - it's 30!

Good one! - Spot on ukxmrv!

I also forgot to mention:

a) You find - suddenly - to your amazement that you can walk again (without PEM)! - big ladder

b) You discover to your utter amazement that are able to get up at 7am, get ready for work, go to work, do work, go shopping after work and meet some friends, go home cook supper, watch a late film, go to bed and actually sleep, and get up at 7am, get ready for work, go to work ... you are now in a different board game

c) As a result of the above - your bank balance increases & you can cancel your disability benefits for ever = you can now buy shares in the board game company

d) You are able to GO ON HOLIDAY - for the first time in decades = you can now buy the board game company outright!!

e) You politely thank your GP and let them know that fortunately (for them as well as yourself) you will not ever be needing medical services in this lifetime again - Jackpot

Then suddenly I woke up ...

OH! All these messages and I didn't know!

Hi! So many answers, thank you! and I didn't receive any alert from the forum, so I didn't know, sorry about the delay - will try and reply individually