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LONG BLOG

ME/CFS, Disability & Video Games For International ME Awareness Day 12/05/15

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INTRODUCTION

I was diagnosed with ME/CFS around 19 years ago. I was a teenager at the time and over the course of the years that followed, my health would steadily decline. In the beginning I would battle strongly, despite repeated and inevitable failure, to continue an able lifestyle. Many friends and family around me would deny my illness existed. Perhaps it was easier to criticise me for my absence than it was to deal with grief resulting from my gradual disappearance from both social and family circles. The controversy and lack of understanding surrounding the illness no doubt made such a recourse conscionable. I denied the illness just as vehemently, to service a belief of little comfort that a return to normal health was within my grasp.

There are many opinions about ME/CFS and I certainly have my own, but rather than encouraging a partisan response, I'll keep my thoughts broad and reasonably shallow. In reality, ME/CFS is a strange marriage of terms. ME (Myalgic Encephalomyelitis) is a very specific term (roughly: Muscle pain with brain & spinal cord inflammation) and can technically be diagnosed – tho seldom truly is. CFS (Chronic Fatigue Syndrome) is a classification based on symptoms. In most cases this classification is vague leading to a 'heterogenous' group of patients, more simply; a group of patients presenting with varying signs and symptoms of illness in addition to those set out in the CFS classification. Those who are placed under the wide banner of CFS could logically suffer from a variety of undiagnosed illnesses - both existing and as yet defined. A recent IOM report has challenged the use of this classification and has encouraged the adoption of new diagnostic criteria to create better research cohorts and better assist patients in accessing the appropriate care.

In my case, I suffer from a variety of symptoms which differ in severity from day to day. Muscle pain, sleep disturbance, poor quality of sleep, Postural Hypotension (sometimes I cannot stand without feeling dizzy and at my worst I will actually faint and my lips appear grey – I look a bit like a zombie!), dehydration, temperature sensitivity (the warm is hot and the cold is painful), poor concentration, migraines, restless exhaustion and post-exertional malaise (all of my symptoms are made worse after activity and I am unable to repeat even simple activities like personal hygiene without a significant period of rest and recuperation or some form of assistance).

VIDEO GAMES TO THE RESCUE?

I am what many with my condition might describe as one of the lucky ones. While there are times when it is too painful and too exhausting to play video games. I am able to spend some time on them. In the worst cases of ME/CFS, even the light of display would feel as though staring into a searing laser beam. For me, it always comes at a cost – even as I type this blog, I am faced with blurry vision, dizziness, the inevitability of a headache and the muscles in my fingers begin to swell with pain. When playing video games the result is very much the same though mercifully, it is not a joyless experience.

 

"I used to be an adventurer like you, then I got ME/CFS"

 

The majority of my life is spent indoors, so the ability to explore virtual worlds can be such a liberating experience. If you take a game like Skyrim, the simple act of traversing the landscape was infinitely more satisfying than the game mechanics themselves (Opinion: Skyrim has a terrible combat system). I greatly look forward to the onset of affordable VR technology to augment that feeling of freedom to an even greater degree. In my case, I might spend as much time in a forest tech demo, listening to sounds of nature and watching the wind disturb trees as I would playing a game.

NEW WORLDS, NEW PROBLEMS

Humans are social creatures and disability can be very isolating. Even if I had no difficulty gaining understanding from friends and family, my ability to participate in any sort of activity has greatly diminished as my illness has progressed. For this reason, the explosion of the MMO genre was instantly enticing to me.

Some years ago, I spent some time – too much time - playing the classic MMO Everquest. In it I found a world where I could escape definition and at least some of my disability. I could make new friends who did not look on me with disappointment. This was a virtual society where my once great ambition could be rekindled and status could be regained. For a while, Everquest was the perfect distraction, but ultimately I made too many friends and coveted too high a status and playing the game would leave me ill. Soon I would have to make the same excuses to my in-game friends as I did to those in RL (Real Life) and I was once again met with a familiar lack of understanding.

RECALCULATIONS

It would be easy to externalise the blame for my woes, but I shouldn't expect others to grow if I am not prepared to do myself. In my haste to feel integrated, I wanted to pretend I was well, to deny my own reality. A reality already subject to forced neglect due to disability was near abandoned whilst I became something of a human ostrich. As my time with Everquest came to an end, I swore that I would never again indulge in a hobby in a way that led me to such personal neglect.

In life, I found new ambitions. I discovered that while disability prohibited the dreams of my youth, the many feats in life for which the greatest battle was willpower would begin to restore my self confidence. I begun to make healthier choices and as I worked hard on improving myself, my doctors in turn would start to work in equal measure along with me. Subsequently I was diagnosed with Postural Hypotension (a common occurrence in ME/CFS patients – tho it is still not routinely looked for in most cases). A diagnosis that enabled me to make more efficient adaptations to my lifestyle and increased my ability to manage my health problems.

There remains a limit however and there is always down-time and so video games continued to provide at least some of the excitement and exploration I desired.

ADAPTATIONS IN GAMING

Disabled adaptations in gaming tend to be pretty sparse and in some cases have taken a step backwards. There was a time in PC gaming where nearly every game had a quick-save button. This feature has been steadily removed over recent times and from an able point of view – it makes a great deal of sense. The quick save button diminishes the weight of in-game choices – thus limiting the game designer's ability to affect the player. As a disabled gamer, I have come to miss this feature greatly, but perhaps more depressing is that there are some great compromises that simply aren't used.

If you've ever played a Nintendo DS then you'll note that many games have a suspend-save feature as a clever means of dealing with the issue of low battery. This is a one-time save which is useless once loaded from but allows the immediate cessation of gameplay. For a disabled gamer, the period of gameplay between checkpoints could be too intense, or on that particular day they may just need to stop playing as a result of exhaustion or discomfort. So the suspend feature is an ideal compromise. A great compliment to this feature would be a limited 'gameplay-rewind' ability. I think even able gamers would appreciate something like one five second rewind per checkpoint – for that moment when you spill your coffee or the phone rings and you fumble the pause button. For the disabled gamer, it could be a heavily punished input error, a moment of pain or a lapse in concentration as a result of cognitive issues that would be quickly and fairly remedied by way of a “Rewind Mulligan”.

BACK TO THE GRIND?

Recently after years of not touching an MMO, as a long time (and long suffering!) Final Fantasy fan I took a look at FF14:A Realm Reborn. And there's a lot of good to be said for the adaptations on offer. For the hard of hearing, the game offers a visual representation of the in-game sound to help players sense when something is happening outside of their vision. Also the game supports macro use which you can deploy without any external tools. This allows the use of skill chains and can greatly reduce the need for player interaction. The game also has really rewarding crafting systems and solo questing which allows for a more relaxed style of play outside of the higher energy dungeon style game-play.

There are however, several areas which could use improvement. Everquest had a great feature whereby, if you were low on health and taking heavy damage, the sound effect which played as you were hit was very distinctive and gave an audio indication of what you might have missed visually - in FF14 this is not the case. The party window could be an awful lot better too. Some nice thick, yet distinct HP bars would not go astray. Locking the macro system to integer-only pauses between actions, restricts the effectiveness of those who rely on them in favour of the more able button spammer (macro chains are not reliable in many situations either as adaptation is still required). Finally a custom in-game audio or text trigger system would be ideal and is sorely lacking.

Personally going back to an mmo, I made some adaptations to how I play. I quit when I want to quit. The in-game friends I have made are few and must be understanding. My free company is small but friendly. I specialise as a crafter which allows me to stop and start at my leisure. I wont play without having attended to as much as I can in RL that day first.

CONCLUSIONS

My lesson from all of this? In the virtual world, your problems still follow you. They might take a different form but they remain none the less. Whether through the physical barriers of pain and disability, the mental barriers that make co-operation and healthy enjoyment a challenge, or through the torturous virtual reminder of what life might have been, if only things had been different. The struggle for recognition, inclusion and adaptation are the same as they have always been. A virtual utopia where such hurdles are unnecessary remains quite a way off – and frankly I pray medicine beats it to the punch! But based on that similarity, it is possible I might one day be able to apply for an electronic certificate which allows me the use of video game features traditionally deemed as cheating. Who knows what the future holds?

MORE ABOUT ME/CFS

For more information on ME/CFS, check out these links:-

The UK ME Association :- Advice, Support, News and Information

Beyond ME/CFS :- The recent IOM report

Phoenix Rising :- ME/CFS News, Views and Online Patient Community

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About Chumble Fuzzlyone of us since 5:29 AM on 01.19.2015

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