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Coyne: Why patients should not enroll in a clinical trial of video gaming treatment for CFS

L'engle

moogle
Messages
3,227
Location
Canada
I can only play sedentary games that don't require fast reaction. Even then I get sick from playing them.

And when I was healthy I LOVED exercise. I dream of being able to exercise. Why do they not listen to the thousands of patients who loved to exercise and only had to stop because of illness. Oh right we're all just lying and weak of character...

I can't learn new games or other things without getting a headache either.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
L'engle
yeah that's one thing that's not often spoken of about the cognitive problems:
it's hard and PAINFUL to learn new things!

every time I learned a new art program for example, it literally hurt, gave bad headaches
once upon a time I was extremely intelligent and best thing that gives is the ability to quickly learn and remember things
Intelligence is just a tool, always what you do with it that counts, but it makes an enormous difference in how quickly you can learn a new skill set

I really notice this with my computer art programs as I've get rusty as "bad" periods would prevent me doing art for a while, or new version would come out and I'd have to learn it
now health's s bad I cannot do art and that really, really upsets me :/

I learned so many things back in the day, dearly wish we had Youtube back then :p
I loved reading old encyclopaedias, reading dictionaries to find new words, even taught myself how to make medieval armour, etc etc.
I found the world endlessly fascinating :)
hence being forced into being a sick hermit is *INTOLERABLE* and only games, books and my dog make it otherwise.

I used to have a 3/4 day exercise system (this is way back been doing that from I was 15 to around 24 years old)
day 1 legs
day 2 stomach chest back
day 3 arms
day 4 rest
and you use light or medium weights, smoothly no jerking, for a LOT of repetitions, to build fitness and strength of your joints and tendons (which is more crucial than muscle strength and takes a lot longer to build)
correct form and smooth actions are vital for both actually doing it right and getting best effect, and not injuring yourself

Really angry at morons who told my cousin and his pal they had to "train with heaviest weights they could use to start with!" so of course they could only do couple of reps and got hurt, duh!
really should start with an empty bar or just lightest weight on each end for first week or two

and I'd walk my dogs couple of miles a day AND go shopping for family sometimes three times a day, on foot (didn't own a car and saw no reason to not ENJOY walking), hence I rarely had a pair of boots last longer than 3 months before I wore them out :p

So, to conflate this illness with "laziness", which they HAVE done is more of their deliberate, wicked evil
same with Eugenics SAME thing: conflate the bullshit made up concept with useless, lazy, troublesome people you want fools to think are "better off not living"
Grrrrr!


Civilization 6 is out in a moth or so, the graphics look to cartoony/simple compared to the gorgeous visuals of #5 though :(
but be less eye/brain strain

(Some) computer games are very beautiful art to my tastes
as a kid who loved scifi, seeing things like the amazing giant space station and the "Suicide Mission Run" into the Galactic centre, full of black holes, in Mass Effect 2 were absolutely outstanding!

*SPOILER* for end of Mass Effect 2 one of the BEST pieces of story/art, ever, IMHO

 
Messages
65
Location
UK
My OT suggested I play Patience (the one that comes with Windows) to help my motor skills and for my brain to make connections.

I find like you guys, I can sort of do things I already know about, but new stuff.Nope!

I play Diggy's Adventure. It's not terribly interesting - you click to dig out tiles and solve not very hard puzzles. But I enjoy it.

I enjoyed it even more today - local child came to see me (he must have been very bored lol) and did the clicking for me, so I didn't even have to play, just watch... lmao
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im going to try again to sign up to this study if it isnt too late as they may see a very interesting result if I can join as seeing that last time I played a game of mini golf with sitting down in between the hits, put me into hospital for a drip.

I think they need to see what harm this kind of thing can do to a ME patient to shatter their current very silly thinking of things. (I cant do many repatitive physical motions). How ethical will they think this trial is if it causes one of the participants to need to be ambulanced to hospital?

I have once tried to join it I think but i think I missed the call back.

One good thing if they are recruiting from the states ME/CFS society from people contacting them from that website or members who get the societies journal, in general we are quite a sick bunch here who participate in the studies over here. (Ive met some of the study participants in other studies over here and just looking at us you can usually tell we are sick).
 
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