Rewarding the ME/CFS Brain

September 26, 2013

Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living…

pixabay-reward-cfs-brainI knew I was coming back a bit to the land of the living after several years’ exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a coup.

It was a ridiculously challenging and exhausting ordeal. What should have only taken days, instead took a few weeks. And even once I knew what I was doing, I would find myself frazzled and sweating as I’d write a few status updates and replies to friends.

Just to be able to say to myself “I have friends,” was a novelty that got endorphins moving which had seemingly forgotten how to move for years. True, I never saw any of these friends. But I hadn’t seen any in my town for so long that knowing I had friends across the country or around the world was such a step forward, it left me breathless and in tears at times.

That autumn, my friend Lisa, who also had ME/CFS and who lived in a tent on the West coast, took a foray onto a Facebook game, and sent me an invitation. It was a slow paced little game, which meant it was just a bit too demanding for me, neurologically speaking.

But I found that it was a great reprieve after writing articles and living on Phoenix Rising’s forums at the time. And I could click on my little crops and trees at the slow pace I needed to creep along at. If I had to close my eyes, or go to bed, or step away from the computer because I felt like I was going to crash, I could do that, and I did. Often.

A year earlier, I would not have been able to play this game. And, of course, at that time I also did not have a friend who would have invited me. So the reward systems in my brain were getting dusted off, and like the rusty old tin man, being slowly oiled and regaining some mobility once more.

A few months later, I moved on to another Facebook game, this time inviting Lisa to join me there, and I talked my husband into playing as well. This game had a faster pace, and involved cooking and serving food to little cartoon people.

It’s funny. I really was never very big on games before. And even now, while I play a game or two most days for awhile, I feel a bit embarrassed, and I feel a crazy grin on my face sometimes as I become aware of what I’m doing.

I read somewhere that the reward centers of the brains of the chronically ill are depleted. Sorry, I don’t remember where that comes from (thank my ME/CFS brain for that), nor do I remember anything else from that article. But, I have thought about this notion quite a bit, and have concluded that there are very serious reasons some of us play games online – and it ain’t just boredom.

When you are incapacitated and have skinny support systems, you can bet the reward centers in your brain are not getting much action. And for those of us with a little brain power and the ability to tap a keyboard, computer games may be the only way any of these nurturing brain chemicals will be triggered.

So prime that pump. Go grow some lettuce on your pretend farm, and feel the satisfaction of harvesting and selling your crops.

Serve up meals in your pretend cafe, and enjoy feeding all those cartoons breakfast, lunch and dinner. It somehow helps to make up for the fact that most days all you can do is nuke a bowl of soup for yourself.

Watch your cash mount up in these games, even while you have no way of making money in the real world and can’t pay your bills, and enjoy at least part of your brain feeling flush and well-padded.

Your brain knows this stuff isn’t real, but in some ways it must be perceived as real because it feels good. It is reassuring to take on a little virtual challenge and … succeed. The first few times I did this, it would leave me hyperventilating and … afraid. Yep, I would feel afraid – the stress response kicked in big-time.

I was so used to not being able to make things happen, so used to things not coming to completion, so used to not having any success … I almost couldn’t believe it could happen in this little game. But it did. And the way it made me feel makes me suspect that maybe somehow there was some rerouting going on in my brain. And it was important.

I still think playing games is silly, but I still do it. And I am serious about it. I am pumping out as many positive chemicals as I can.

I don’t know what they are, and I don’t know how it works. I just know that the dry desert of my sense of satisfaction and pleasure about making things happen has been watered by these pastimes, and I need all the watering I can get. You’ll have to excuse me, it’s time to tend my crops.

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29 comments

{ 29 comments… read them below or add one }

Ember September 26, 2013 at 10:00 pm
Phoenix Rising Team

I read somewhere that the reward centers of the brains of the chronically ill are depleted. Sorry, I don't remember where that comes from (thank my ME/CFS brain for that), nor do I remember anything else from that article.

Here's where that comes from, Jody:

Decreased basal ganglia activation in Chronic Fatigue Syndrome subjects is associated with increased fatigue

Elizabeth R. Unger, Andrew H. Miller, James F. Jones, Daniel F. Drake, Hao Tian and Giuseppe Pagnoni

© 2012 FASEB

“The findings in this report are those of the authors and do not necessarily reflect the views of the funding agency (CDC).”

Here's the article:

"Chronic Fatigue Syndrome Patients Had Reduced Activity in Brain's 'Reward Center'"

Firestormm September 27, 2013 at 12:36 am
Ember

Here's where that comes from, Jody:

Decreased basal ganglia activation in Chronic Fatigue Syndrome subjects is associated with increased fatigue

Elizabeth R. Unger, Andrew H. Miller, James F. Jones, Daniel F. Drake, Hao Tian and Giuseppe Pagnoni

© 2012 FASEB

“The findings in this report are those of the authors and do not necessarily reflect the views of the funding agency (CDC).”

Here's the article:

"Chronic Fatigue Syndrome Patients Had Reduced Activity in Brain's 'Reward Center'"

Thanks Ember. I have been trying to remember that study for yonks! :)

Firestormm September 27, 2013 at 12:51 am
Jody
For me it was minecraft. Still is if I am honest. It's a simple concept (though can be more complex if you want it to) and aside from the odd monster – that can scare the crap out of you (so I only would play when at my best) – it is rather relaxing and rewarding (and can be obsessive but I can't really play for long even now).

I don't know in what way it helped but it did – confidence? Hand-eye-coordination? Keyboard skills? Overcoming noise and vision sensitivities? I don't know.

I remember when I first tried to play something – at my younger brother's encouragement just to help get me outside of myself really – and I was a mess. Just couldn't get the concepts, found it too hard to concentrate, the colours and noise were way too much etc. but my little brother persevered and we finally discovered minecraft which is more my cup of tea.

We now have a family server and my neice and nephew quote often join in. It's all rather 'social' and good fun too (though my brother and his mate take it far too seriously!!) :)

Little Bluestem September 27, 2013 at 1:53 am

For me it is Civilization. I find it highly addictive. The primary point is to be the first to build and launch a spaceship while defending yourself from the other civilizations (I make no attempt to defeat any of them). In the version I have, the computer controlled civilizations are not very adept, so the game is not stressful.

What I really like is building up my cities. I tend to put every improvement in every city whether or not it is economically worthwhile. If you keep your citizens happy, they will periodically fund improvements to your throne room. I aim to get every throne room improvement that exists. I guess that feeds my ego!

Unfortunately, the last time I tried to load it, my computer kept telling me to put a disc in the drive even though it was already there. Playing it does seem to somehow ‘reset’ my brain.

Firestormm September 27, 2013 at 3:22 am
Little Bluestem

For me it is Civilization. I find it highly addictive. The primary point is to be the first to build and launch a spaceship while defending yourself from the other civilizations (I make no attempt to defeat any of them). In the version I have, the computer controlled civilizations are not very adept, so the game is not stressful.

What I really like is building up my cities. I tend to put every improvement in every city whether or not it is economically worthwhile. If you keep your citizens happy, they will periodically fund improvements to your throne room. I aim to get every throne room improvement that exists. I guess that feeds my ego!

Unfortunately, the last time I tried to load it, my computer kept telling me to put a disc in the drive even though it was already there. Playing it does seem to somehow ‘reset’ my brain.

Oh yeah! That rocked back in the day. Haven't played for years. I heard they had a new 'Gods and something' version out that appealed to me. Mind you I think I would find it very hard to follow and relax with these days – but you never know until you try! :)

xchocoholic September 27, 2013 at 3:41 am

I'm happy you found a way to reward your brain. I can relate to needing to feel
a sense of accomplishment but have been getting it from little things
like going to the beach, completing my laundry, getting groceries in the house,
talking to a friend, etc. I was getting this from being a mother but she's an
adult now.

I suspect a therapist told me early on in this illnesses that I needed to feel
good about accomplishing these tasks. Looking back that was a smart thing
to tell someone with a disabling chronic illness. Kudos to whoever that was.

Enjoy your veggies. : ) X

Legendrew September 27, 2013 at 4:59 am
Firestormm

Jody

For me it was minecraft. Still is if I am honest. It's a simple concept (though can be more complex if you want it to) and aside from the odd monster – that can scare the crap out of you (so I only would play when at my best) – it is rather relaxing and rewarding (and can be obsessive but I can't really play for long even now).

I don't know in what way it helped but it did – confidence? Hand-eye-coordination? Keyboard skills? Overcoming noise and vision sensitivities? I don't know.

I remember when I first tried to play something – at my younger brother's encouragement just to help get me outside of myself really – and I was a mess. Just couldn't get the concepts, found it too hard to concentrate, the colours and noise were way too much etc. but my little brother persevered and we finally discovered minecraft which is more my cup of tea.

We now have a family server and my neice and nephew quote often join in. It's all rather 'social' and good fun too (though my brother and his mate take it far too seriously!!) :)

Great article Jody, certainly it is helpful to have these outlets to enjoy yourself once in a while and get away from the drudgery that ME creates for us. I remember reading another article somewhere saying video games are a perfect outlet for ME patients although I can't remember where for the life of me.

Nice to see people discussing video games without condemning them as the devils work as the media so often like to do. I've played them all my life (i'm 19 so it's my generation I guess) and still do when I can, although not close to as much considering my ME headaches =(. Currently I'm playing minecraft on the xbox with my older brother and I've also gotten into pokemon games again, the slow turn based battling system is good as it isn't too much action as to give me brain fog but it involves thought ahead. I have to admit that I'm now a little out of the loop in terms of the newest games as while all my friends are playing grad theft auto 5, i'm catching pokemon :thumbsup:.

Minecraft is a good one though as it's a creative outlet and if you so choose you can remove the monsters entirely and build on a creative world with infinite blocks at your disposal. I tried 'civilization revolution' on the xbox with two of my friends but the 3 hour long matches gave me brain fog and a headache so I haven't tried it since. Same thing happened with command and conquer games as well as black and white 2. Must be the extra thought involved for real time strategy games that pushes me over my limits.

peggy-sue September 27, 2013 at 5:39 am

I'm not able to deal with such complicated games, I'm quite happy with various solitaires or Tetris or Bloobs,
but I do get quite excited, trying to beat the clock or my own scores, or just doing something "neat" – such as ending up winning Black Maria on a straight run of full houses.
(It's quite like bridge, which I used to love) Tetris can get physically too demanding, but I still like it for a short while.

The importance of savouring and enjoying every tiny bit of something positive in our lives cannot be understated.:thumbsup:

peggy-sue September 27, 2013 at 9:31 am

:)
This thread has brought many thoughts and memories to me. I used to work in an Oxfam charity shop, before I got ill.

There were loads of elderly folk who came in every day – just for the chat and a giggle. They called the shop "The heart and soul of Lochee". This would be the only social contact these folk had – a wee walk in a local high street to browse the charity shops – "pretend" they're doing high fashion shopping (on a budget), and have a little bit of human contact.
It was very rewarding being a part of that – it made my day, every day.

I still love going into the high street – there's always somebody who stops for a wee chat, I know the shopkeepers all by name, they know mine.
If all I've done in a week is have a wee (superficial) chat to a pensioner there, I can live on the lift it has given both of us for quite a while.

Old folk can be very isolated too.

We need to learn how to give up guilt about enjoying small and simple time-passing things.:balloons:

xxRinxx September 27, 2013 at 10:55 am

I was an avid gamer before I got sick and since I've been ill I find I appreciate my games even more now. Especially the online ones where I can talk to people all over the world. It gets so socially isolating having this disease that even having online friends can be so rewarding!

Snowdrop September 27, 2013 at 12:12 pm

I find that being chronically ill tends to turn some generally accepted views of how we should conduct our lives upside down. Before becoming (mostly) housebound with ME I had concerns regarding computer use in our family, magnified I think by the desire to avoid bad habits as defined by the dominant media outlets that pedal fear of imperfections in living. I have modified my view, at first simply because I was too tired to constantly confront the issue and then finally realising that for our alternately functioning family (all of us also score high on Asperger's/Autism scales) game playing does seem to serve a useful purpose. My son loves Minecraft, my husband some farm game where I think he too might be growing some lettuce and I never met a game I didn't like. A really easy and relaxing game that hasn't been mentioned is Peggle. And slightly off topic (but still sort of related), I really enjoy connecting with other people on the computer by sending/receiving postcards to/from people around the world via a website called "Postcrossing". You can write a short bio of yourself, tell people your interests and request cards you might like to receive as well as view the gallery of postcards exchanged (people scan and upload them).

peggy-sue September 27, 2013 at 12:27 pm

Some folk consider games such as football not to be a waste of time and effort and resources….
(can you tell I'm not one of them?;) )
for others, who are not able to run around a field chasing after a ball, why should computer gaming be looked on as anything different?

Keela Too September 27, 2013 at 2:33 pm
peggy-sue

:)
This thread has brought many thoughts and memories to me. I used to work in an Oxfam charity shop, before I got ill.

There were loads of elderly folk who came in every day – just for the chat and a giggle. They called the shop "The heart and soul of Lochee". This would be the only social contact these folk had – a wee walk in a local high street to browse the charity shops – "pretend" they're doing high fashion shopping (on a budget), and have a little bit of human contact.
It was very rewarding being a part of that – it made my day, every day.

I still love going into the high street – there's always somebody who stops for a wee chat, I know the shopkeepers all by name, they know mine.
If all I've done in a week is have a wee (superficial) chat to a pensioner there, I can live on the lift it has given both of us for quite a while.

Old folk can be very isolated too.

We need to learn how to give up guilt about enjoying small and simple time-passing things.:balloons:

I hear you Peggy Sue… it's all the little conversations that are so important.

jeffrez September 27, 2013 at 6:26 pm

I love Civilization! I play Freeciv on Linux now, and I think it's available for windows, too.

Another great thing to play is… the stock market! :D There are even websites out there like kapitall.com where you can set up practice accounts and see how you do. That particular site gives you $100,000 practice portfolio to start with, and you can "buy" more with the coins they give you for doing different tasks and exploring the site. It's very addictive, and you learn something about the "real world" of the market in the process. Every week they also have a free Dow tournament, and they give prizes at the end of the week for 1st, 2nd & 3rd place. I got 1st this week, and the prize is $100.:D As ME patients, who of us couldn't use a little extra money, right?

CateK September 27, 2013 at 8:09 pm

I had neuropsych testing about 10 years ago (to document my cognitive problems for my SSDI application). Afterwards I talked with my CFS doc about the results. She said that one way to improve my cognitive functioning was to go through a neuropsych brain retraining program, that would involve an hour a day, 5 days/week for 3 months: OR, I could play computer games – but I would have to play different games, & add new ones regularly. Guess which I chose?? :-D

CateK September 27, 2013 at 8:09 pm

And if anyone bugs me about the time I spend playing computer games, I just tell them that it's doctor ordered therapy!

taniaaust1 September 28, 2013 at 3:24 am

I go throu periods where I may be playing a computer game. After not playing any games at all for the first half of this year, Ive recently, the past couple of months, got back into doing this for short periods. Its relaxing for me and takes my mind off of life stressors but the game has to be very easy and I find it best if Im not playing against others as things then go wrong eg people getting angry at me as Im taking too long to take my turn!!

The only game Ive been playing is easy patterns of SolitareMahjong (its too much thinking out if its a hard pattern in which I really need to think over).

caledonia September 28, 2013 at 11:32 pm

I'm not too much on computer games, but I did have a friend who was newly disabled with a stroke talk me into playing Words With Friends (basically Scrabble) on Facebook. She was beating me so bad, with all these strange words I never heard of, that I thought she was cheating. I guess I have a competitive streak and hated losing, and the brain fog wasn't helping – so I started cheating too, looking up words on Wordfinder. I made it so that I'd win a few, then let her win a few, etc. so she didn't suspect anything. It made me feel much better. lol

Beyond September 29, 2013 at 1:01 pm
xxRinxx

I was an avid gamer before I got sick and since I've been ill I find I appreciate my games even more now. Especially the online ones where I can talk to people all over the world. It gets so socially isolating having this disease that even having online friends can be so rewarding!

What online games do you play?

I was avid gamer too but lost interest in most games when things started getting realy ugly. And not only in my life with the illness but in the gaming industry in general. :D Still play the isolated gem, such as Hotline Miami or Skyrim (which wasnt as good as Oblivion). In all honesty I think I would be playing and enjoying a lot more of videogames if I had good health, primarliy because I would have money to buy the new machines but also because with my health problems I have lost motivation (or energy?) to do things that used to be rewarding to me.

alex3619 September 29, 2013 at 6:22 pm

Gaming has been part of my management strategy since about 1993. While I have never discussed it in terms of getting some brain reward, I have discussed it in terms of experience control. Our lives are largely out of our control, carefully chosen games give us a sense of control, not just reward. There is something in our lives that is not chaotic and malevolent. That sense of control is a big feature in managing this illness I think.

Having said that there is the issue with games becoming too familiar that fits with a reward response. If its not new, novel or surprising, we get less of a brain response, less of that aha moment.

Added to which many games incorporate elements similar to gambling … maybe around that corner I will find something nice, or in this box, or get given some reward for completing a mission. I play a lot of RPGs but tend to avoid FPS adrenaline-fests. If my adrenaline goes up I am in trouble.

So dopaminergic triggers are built into many games. Its what makes them addictive.

I have played a lot of Skyrim, though the record is Master of Orion, I think I played more of that than anything. Its a very old turn based space strategy game.

I cycle through my games, play one for a bit then a different one. In RPGs I play one character, then next time pick something different. Constantly changing and mixing things up does help keep the game from going stale. So does game rotation. I also think have different types of games helps.

WillowJ September 29, 2013 at 11:50 pm
alex3619

carefully chosen games give us a sense of control, not just reward. There is something in our lives that is not chaotic and malevolent. That sense of control is a big feature in managing this illness I think.

That's exactly why I played games earlier on. Having one thing that worked according to a pattern, that I could predict and to some extent control.

It's harder now because I can't cope with so many decisions. But it's a good idea and I'll pick it up again when the time is right.

Little Bluestem September 30, 2013 at 2:39 am

Yes, Civilization gives me such wonderful control over my cities, workers, and troops. There is no one around to criticize if I want to make economically unjustifiable decisions (which I do). The only thing really novel from game to game is the terrain, but that is fine with me. A nice predictable, me-in-control game is just what I need. (I just wish trade wasn't so difficult to manage in my version.)

Firestormm September 30, 2013 at 4:38 am
Little Bluestem

Yes, Civilization gives me such wonderful control over my cities, workers, and troops. There is no one around to criticize if I want to make economically unjustifiable decisions (which I do). The only thing really novel from game to game is the terrain, but that is fine with me. A nice predictable, me-in-control game is just what I need. (I just wish trade wasn't so difficult to manage in my version.)

I used to design my own world, a replica of the Ancient Mediterranean, if I remember correctly (it was a good few many years back). Came to be one of my main 'hobbies'. I doubt now that the time I spent in pursuit of this would be as feasible under present circumstances. It would be very hard to pack it all in with the things I now need to do and find difficult/time consuming. Still, I am tempted to re-engage with Civilisation in light of your posts :)

N.B. I used to find CivFanatics a great help to me in the past. Not sure what they are like now though.

Little Bluestem October 1, 2013 at 12:54 am

I too found CivFanatics helpful. I used some of their Game of the Month maps. It had never occurred to me to end a game early. I would build my space ship as soon as I could to be prepared if any of the AI civs build one, which they rarely did. I would wait until the last minute to launch my spaceship so I could continue building up my cities and throne room.

In consulting my notes, I find that the last time I played Civ was February 2012. {Sigh}

Firestormm October 1, 2013 at 4:49 am
Little Bluestem

I too found CivFanatics helpful. I used some of their Game of the Month maps. It had never occurred to me to end a game early. I would build my space ship as soon as I could to be prepared if any of the AI civs build one, which they rarely did. I would wait until the last minute to launch my spaceship so I could continue building up my cities and throne room.

In consulting my notes, I find that the last time I played Civ was February 2012. {Sigh}

I for one never did build any spaceship. I had the settings to play in ancient times with – can't recall exactly – domination or some such as the victory condition. What can I say? I am an ancient history nut :)

xxRinxx October 1, 2013 at 11:22 am
Beyond

What online games do you play?

I was avid gamer too but lost interest in most games when things started getting realy ugly. And not only in my life with the illness but in the gaming industry in general. :D Still play the isolated gem, such as Hotline Miami or Skyrim (which wasnt as good as Oblivion). In all honesty I think I would be playing and enjoying a lot more of videogames if I had good health, primarliy because I would have money to buy the new machines but also because with my health problems I have lost motivation (or energy?) to do things that used to be rewarding to me.

Let's seee..I play Dragon Age, Fable, Skyrim(though I agree oblivion is wayy better, especially modded), handheld console games(not big on platform console gaming besides old ps2 games). Then I MMORPG game, Ragnarok online, perfect World, going to start a new one once beta opens..and of course Elderscrolls online when it comes out, woot woot~
Reading and gaming are the only thing I have to do besides feebly walking my dogs, haha..Luckily my eyes have evened out so i don't get so nauseous playing, but i still have to pause and rest frequently. I went through a year period where I didn't even get online..it was just too depressing, but i've learned to move past that and accept things, so i'm starting to enjoy things again.

Beyond October 1, 2013 at 11:39 am

Hope Elder Scrolls Online will be up to the challenge! Thanks for reminding me about Dragon Age I must admit I dismissed it in the past but now the gameplay looks appealing.

As an exchange I will tell you this: Mass Effect is an interesting cross-over of shooter and rpg, with a rather profound role playing aspect to it, the atractive of futurism and great visuals. I say that the rpg aspect is profound compared with what is offered most of the time but could be a lot more.

xxRinxx October 1, 2013 at 11:57 am

Definitelllyy recommend Dragon age. One of my favs because you can switch up between characters and set a battle plan. I like games where split seconds decisions make a big impact on games also.
I'll look it up, I usually buy the farm on shooter games(..I can do archery..just not guns..haha) but i'm always looking to find one i can actually do well, haha. Unless its scary and has jump-out frightening moments..My heart just can't take those while i'm ill ,haha.

Nico December 1, 2013 at 12:33 pm

I really enjoyed reading this thread, and maybe at some point I can add a different game to my repertoire. I've never been a gamer, but since being home-bound & isolated I try to find ways to keep my mind stimulated. I'm playing a little less these days, but in the evening I tend to go to Lexolous on Facebook. It's like scrabble. Also play Mahjong on and off.

I used to be a bit of a type A, and also athletic before illness. I think the Lex game brings out this competitive side in me a little bit. I try to outwit, and think, strategize, etc. I have even asked people to play in French or Italian with me (although I don't really know the languages well enough). I simply figure out words the best I can with Latin roots as my guide. When I don't know a word, I go to wiktionary to look it up (after the play, I prefer not to use a word builder). So, I like to think I'm learning something too. (although never sure how much is retained).

When I'm super tired, I just play to play. Lexolous allows one to chat, so that can be nice too at times. When I play this in the evening, I also have a radio show on…to feed my brain as best I can.

I have no idea how to play some of the more "serious" gamer games mentioned here. I think adrenaline games would be a mistake for me too. Thanks everyone, for some ideas!

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