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..
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..