Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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The artist as a ME sufferer Found this in a tweet by SW

Discussion in 'General ME/CFS Discussion' started by Snowdrop, Sep 27, 2015.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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  2. Effi

    Effi Senior Member

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    This looks interesting! But SO many pages... From the abstract:
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Effi
    I agree. The arts are a more natural endeavour to me than science.

    It does however raise a question that is a big issue for this community; how does someone with ME manage to do so much. And it brings to mind for me the idea that these stories are told because people are primed (by the media perhaps) to find a specialness or significance to people who rise above there situation. It suggests a struggle of the will with the determined will triumphing over any and all setbacks.

    There is another story in Action for ME about a woman who does gardening as a sort of therapy for her ME (although it really reads as more of an advertising piece for promoting the herb society she started).

    Certain factions with interests in ME seem to take this attitude. Your ME is validated by your overcoming and doing something. To these groups these are the people of ME the faces that matter. Those who are unable to overcome are of little interest to some organisations and people with authority in the medical community.

    That said, I'm not arguing these people are not ill or that their stories don't matter or have nothing worth sharing--I just continually despair that this is all that gets seen outside the community. People with ME overcoming and doing x,y or z.

    There is much more to say as it involves the evolution of S Wesseley's view of ME. He's rebranded himself as a believer but now promotes the same views as the popular media PWME rising above -- what they can accomplish. I think this is fine so long as the same people provide balance that ME is a sliding scale from mild to severe and that this changes over time.

    I expect there is a corollary in the autism community between high functioning autism and severe autism. Still more could be said.

    The paper is indeed long. If anyone reads it would be glad to have quotes on the subject of creativity.
     
  4. Effi

    Effi Senior Member

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    @Snowdrop You're making a very good point, I hadn't looked at it that way yet... It's the paradox of ME: when you don't have it too bad, you can 'rise above it' and get applause and recognition. When you have very severe ME just surviving each day is more than you can humanly handle, so although you suffer 1000 times more and actually work so much harder, you are completely invisible. I guess it's the way our society works. You can only be someone if you have something to show for it.

    A thought that goes through my mind a lot is this: in other serious illnesses (cancer is a good example, cause that's taken extremely seriously by everbody), you either get through it and get a conqueror-like status. Or you are defeated by it, which gives you a kind of martyr-status. For ME you get nothing. Most people don't get totally healed, but most don't die either. It's like we're in some kind of limbo. No recognition whatsoever, not for patients, not for carers. I guess people prefer a black-and-white type situation - you are either cured, or you die. It's crystal clear. ME otoh is a blurry kind of grey...

    PS I'd be interested too to read someone else's comments on this 300+ paged document. lol ;)
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yeah, I also appreciate the fact that if you are able to do things you are less hidden and easier to find. So that these people will get noticed I suppose should be no surprise. But it seems to me that leaders in health care who take an interest in ME and advocacy people should be capable of looking deeper and highlighting this issue. Some do a very good job of it, some don't.

    I confess to feeling jealous of these people of ability with ME. I my situation I have been mildly affected early on. There was never a time when I was full of energy and able to establish myself in pursuing something with great energy. If you have managed that much before becoming ill I think that puts you ahead of the game in terms of being able to manage functioning.

    I wonder too if some people with ME don't experience too much cognitive decline and their illness is mostly an issue of physical energy.
    For me the cognitive and physical decline have been pretty much in tandem.

    I know this seems off my own thread topic but this was part of what I was thinking about. I spend a lot of time thinking about the issues around ME that tend to keep our community marginalised including issues of homelessness and poverty and the nature of how a group becomes an out group.

    A little too much philosophising for something that was about creativity originally I know.
    Sometimes I just can't help myself.
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Good point.
     
  7. worldbackwards

    worldbackwards A unique snowflake

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    The records look really lovely:
    [​IMG]
    I might give them a listen. They sound like they'll be an acquired taste though.
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    Maybe I'm just in a bad mood ( crappy sleep and full on day with pain..), but I really don't like the term 'exhausted artist.' Saying people with cfs are 'exhausted' is a bit like saying that people suffering from depression are 'not in a good mood':bang-head:.:rolleyes:
    I describe myself as 'disabled artist' because it is just so difficult to get anything done and I feel I need to acknowledge that.
     
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  9. Effi

    Effi Senior Member

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    exhausted sounds so leisurely, doesn't it? o_O:rolleyes:
     
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  10. Battery Muncher

    Battery Muncher Senior Member

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    Looks quite interesting, wish I had the time and energy to read this.
     
  11. CantThink

    CantThink Senior Member

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    I agree and that's how I am too. Restricted, frustrated, stifled, suppressed by my own body... So many ideas & projects half started, or existing in my brain, as scribbles, sketches, lists, words on a page etc. I get things done in my better moments and then long hiatuses for months... :bang-head: no consistency.
     
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  12. Kati

    Kati Patient in training

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    I will not attempt to read the dissertation because reading makes me worse. But I will answer regarding having pastimes/hobbies with this illness.

    Being creative does not hurt my brain, but reading does. Talking does. Watching Tv does.
    I wouldn't know about gardening, because it can be quite the physical endeavor, but if I want to make artwork and I feel sick, I will break down my tasks and work in 10-15 minutes periods followed by horizontal time.

    Essentially, if an activity provides you satisfaction and stimulation, then people make it work. It may well be the only thing that this person is doing during their day. I call it survival.

    Like I said, my creativity does not hurt my brain as much as noise, talking or reading.
     
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  13. meandthecat

    meandthecat Senior Member

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    Yes and another area is mental health; bipolar is one which has celebrity sufferers , by its nature this condition leads to extreme activity and an edgy creativity which drives a few talented people who also have the opportunity to express it. Having seen this condition close up and the damage it causes to a life, the narrative of heroically overcoming disease puts the vast majority of sufferers in the shade and undermines their everyday struggle.

    I guess this narrative plays well to the healthy and is for their benefit, perhaps it does change the perception of Joe public in good way but as far as I can see it doesn't translate into funding.

    Ours is the mundane heroism that goes unsung and unrecognised.
     
  14. hellytheelephant

    hellytheelephant Senior Member

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    I believe what you define is called 'inspiration porn'- when members of the sick/ disabled community are presented in a narrative that is for the vocarious pleasure of those who are 'normal' There is a collective fantasy that with the right diet/treatment/attitude no one needs to be ill.
     
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  15. jimells

    jimells Senior Member

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    It goes far beyond "no one needs to be ill". The implied message is to blame patients for their illness because they are simply not trying hard enough. In other words, anybody who remains sick for more that a week is morally defective and "stealing undeserved resources" from "society as a whole". Even employees who use their hard-earned "sick time" are made to feel guilty for doing so.

    The foundation of modern "civilization" is the idea that people only have "value" to the extent that they can be profitably exploited by those at the top of the pyramid of society. The "Modern" era has not moved very far from the odious eugenics movements of previous decades.

    I expect to see much more of these attitudes as the canyon between the Rich and the Rest grows ever wider. Our Dear Leaders have a vested interest in keeping the working stiffs fussing at each other while fighting over crumbs, instead of focusing on our tormentors at the top of the pyramid.
     
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  16. L'engle

    L'engle moogle

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    I wouldn't want to knock this project but the term 'exhausted artist' makes me wary as it is too easy for people to extrapolate to 'creative people are more prone to ME' and extrapolate that to 'ME is an existential angst suffered mainly by artists'. The researcher likely means well and it looks interesting but viewing illness in relation to an 'artistic journey' tends to invite ideas of the personality being the root of the issue.
     
  17. hellytheelephant

    hellytheelephant Senior Member

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    I couldn't agree more. iI is more power to the misguided belief that people suffer unduly due to an artistic temperament. ( e.g Van Gogh)., rather than specific physical or mental health issues. I also don't like the word 'exhausted', which suggests having overdone it by regular standards ( having stayed up all night painting whilst quaffing Absenthe presumably... )

    Many of us have overdone it by the time we've got out of bed and eaten breakfast:bang-head:
    Gosh I'm snarky today!
     
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