Discussion in 'General ME/CFS News' started by Sasha, Dec 7, 2017.
From 2016 but I'd never heard of it:
They already lost me at the screen shot. How many ME patients go into the doctor and say "But why do I feel so tired all the time?"
I went in and said "Why do my ribs hurt so much?" Then a couple weeks later that was gone, but the question became "Why do my legs keep burning so badly that I can barely stand after I walk to the bus stop, followed by chills and exhaustion when I get home?" And then "Why can't I sit up for even a minute without getting too light-headed to think straight?"
Youtube video review at
Apparently despite not being able to both feed the bird and herself on the same day, she's "well prepared for the coming week of work."
I think this tweet from the developers exemplifies their lack of understanding quite well:
Sigh. As usual, it's all about 'tiredness'. I wish that folks who feel the urge to write about, talk about, or make games about this condition would take the time to educate themselves on what the symptoms really are, and not spread misinformation.
And, that screen in the game that says "Robin is feeling down. She spent the whole week on chores and boring things, and she still feels tired after everything. However, she is well prepared for the coming week of work" - huh??
Definitely not about ME if that's what they think. What a pity.
I haven't watched this but it's something that Solve are promoting on the site and social media so if it's wrong, it would be great if people could feed that back to them.
Really quite annoying.
Good point, and done now:
I went and tweeted my 2 cents worth too, FWIW. I think promoting the game will only annoy sufferers rather than evoke a good reception from them, and will perpetuate more wrong information to non-sufferers about how ME/CFS just = 'tired'.
Started watching but that shouty screechy git at the beginning was too much to listen to even with the volume right down for 30 seconds. Sounds like he needs to take a trip with Dan TDM and never come back...wont waste my cognitive energy looking based on the reviews above. I wonder what sort of game we could make that would make it more realistic?
Perhaps have the screen go blurry every 10-20 min to represent brain fog slowly fading away then turn the volume right up with screeching noises (presenter at the beginning of that video?) followed by bright glaring white light?
Random fluctuations in energy, if you go too high (actual threshold isn't displayed), your energy is severely reduced the next day. The bird probably croaks, and the plants don't have a chance. Dirty dishes form a mountain of stink. Writing your book? Maybe some incomprehensible babble
Then your nice long weekend is over, so you can snap out of it and face the work week. Unfortunately, you collapse halfway to the bus stop and die on the sidewalk An LP practitioner walks by and tries to convince you that you can reverse death if you just start thinking positively and stop "doing" the dead thing.
Perhaps you could have a random event generator where one spin,of the wheel you die on the way, another you manage to drag yourself to work but then perish by lunchtime, and another you could survive but have a slow campaign of work colleagues attacking your personality and quality of work.
Oh know you got made redundant...go to the job centre do not pass go and do not collect a wage slip.
You could also have "take a pacing card". 10 units of metabolic energy left, do you:
A. Wash yourself
B. Prepare a meal
C. Spend 20 minutes being patronised by a well meaning friend or relative
If you choose to forgo the washing your character could develop an increasing cloud of filth (like pigpen from Charlie Brown) ?
Duplicate thread merged
A Kiwi game about chronic fatigue syndrome is available now on Steamfor the princely sum of zero dollars and zero cents.
Robin is described by developer Group Pug as a short slice of life game that was made to give some visibility to an invisible illness – "a quick, relatable insight into the struggles of living with CFS/ME".
It has the player live out three days in the life of Robin, a CFS sufferer, and try to manage her time as best they can.
"What you decide to do in these days is up to you, but know that there is never such a thing as a perfect ending," the game's Steam page states.
Robin was created by Isabelle Dela Torre, José Fernando Gracia, Annaliese Bevan, and Poppy de Raad, and has already caught the infected eye of massive YouTuber Jacksepticeye.
"I hope playing games like this kind of opens up that door for people to be able to talk about these things," he said.
Someone has posted a comment about him saying exercise is good, and another poster has mentioned unrest.
However, no one seems to have pointed out that it is not just about 'fatigue'.
Also Robin appears to work full-time and there doesn't seem to be questioning that if that is all she can do at the weekend, how on earth can she go to work!
This game was previously discussed here: https://www.s4me.info/threads/robin-a-video-game-where-you-play-a-woman-with-me-cfs.1418/#post-23959 . A nice effort but unfortunately not very accurate and a bit cringeworthy, depicting ME as just being tired.
Free is about what it's worth. To quote myself:
The authors think it also applies to depression, which is a good indication of their beliefs about what's causing all that fatigue in ME/CFS:
The game isn't perfect, but in terms of getting the basic principle across (of only having the capacity to do a limited set of activities, and how it's frustrating), I think it does fairly well
I also thought the tired all the time wasn't particularly true to life. Perhaps if they had an oppressive boss at the work criticising and threatening the sack, and then deliberately increasing workload to prove you were rubbish or taking away your reasonable adaptations that would help make it more real?
Oh and an unpredicatable PEM that wipes you out for 3 days...and brain fog meaning you washed the bird instead of feed it?
Add in joint muscle pain, nausea, heart rate fluctuation and emergency toilet breaks. You should also have unexpected phone calls and visits to wipe you out quicker. Perhaps a visit by a neighbour that talks to you about a friend who recovered with yoga and diet changes that takes 20 minutes?
Could also have a doctor that hooks you up to a treadmill and cracks a whip for your own good
"time for your graded exercise therapy" (mad laugh, lightning seen across dark sky through high up window with sloping sill)
Perhaps a PIP assessment?
Not really. It makes her lack of activities look like a choice, and that's what a lot of the reviews say.
I think most of the reviews on steam seemed to get the basic message. To me, at least, her lack of activities didn't particularly seem like a choice
I think the developers (who are students) should be congratulated on their effort, at least. It seems like a pretty good effort to me
I think they put a decent effort into creating a game. But the content would suggest they put no effort into understanding the symptoms which ME/CFS actually entails. They are only showing the behavioral aspect - people with CFS don't do much.
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