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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Rewarding the ME/CFS Brain

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 26, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
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  2. Ember

    Ember Senior Member

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    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'"
     
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  3. Firestormm

    Firestormm Guest

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

    Firestormm Guest

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    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!!) :)

     
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    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.
     
  6. Firestormm

    Firestormm Guest

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    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! :)
     
  7. xchocoholic

    xchocoholic Senior Member

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    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
     
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  8. Legendrew

    Legendrew Content team

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    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.
     
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  9. peggy-sue

    peggy-sue

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    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:
     
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  10. peggy-sue

    peggy-sue

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    :)
    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:
     
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  11. xxRinxx

    xxRinxx

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    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!
     
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  12. Snowdrop

    Snowdrop Senior Member

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    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).
     
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  13. peggy-sue

    peggy-sue

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    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?
     
  14. Keela Too

    Keela Too Senior Member

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

    jeffrez Senior Member

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    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?
     
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  16. CateK

    CateK

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    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
     
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  17. CateK

    CateK

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    And if anyone bugs me about the time I spend playing computer games, I just tell them that it's doctor ordered therapy!
     
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  18. taniaaust1

    taniaaust1

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    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).
     
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  19. caledonia

    caledonia

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    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
     
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  20. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    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.
     

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