Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME/CFS: A disease at war with itself

Discussion in 'Phoenix Rising Articles' started by persuasion, Sep 10, 2014.

  1. persuasion

    persuasion visitingmrssmith.com

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    Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health.

    What I object to is this sentence: 'We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.'

    This is the perpetual sentiment of the well and it reveals exactly what they think of the ill: enfeebled, ineffectual, pathetic.'

    This is what we are up against.
     
  2. persuasion

    persuasion visitingmrssmith.com

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    Not that he says he will kill himself. Just read the article in full: he says he will refuse all tests and treatments after 75. Hmmm, I wonder...Easy to say when you're fit and healthy!
     
  3. persuasion

    persuasion visitingmrssmith.com

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    Ren,
    You inspired me to write a response to the Atlantic article. You can see it here:
    http://visitingmrssmith.com/?p=420
     
    Ren likes this.
  4. jimells

    jimells Senior Member

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    That told me all I needed to know! It's pretty scary to think that someone related to Rahm Emanuel has an important post at NIH. Appointed by Mr Hope-And-Change himself, no doubt. I bet the teachers in Chicago wish Rahm had stayed in Washington.

    I tried to view the article, but it wouldn't load over my dial-up connection. :bang-head:
     
  5. persuasion

    persuasion visitingmrssmith.com

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    I don't know much about US policy makers (being in the UK) but the fact that anyone in a position of authority or power states these views is worrying. I don't care what he thinks in private - that's his business. But it's not 'just an opinion' when what you say actually has a real effect on people's lives.

    When you say you couldn't view the article - where you referring to the one in the Atlantic or mine? If the latter, I've just optimised my blog for mobile devices (not having one myself I hadn't thought of this till now!)
     
  6. jimells

    jimells Senior Member

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    The Atlantic. Most commercial websites are so bloated with god knows what, that I can't view them. I made a few web browser settings that allow me to load this forum in a reasonable amount of time. Thank goodness for that.
     
  7. persuasion

    persuasion visitingmrssmith.com

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    And another one: http://visitingmrssmith.com/?p=459 which explores why people who are seriously ill consider suicide. These views (in the Atlantic magazine) don't help us at all.
     
    ahmo likes this.
  8. JalapenoLuv

    JalapenoLuv

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    It depends if you believe that consciousness is limited to the body or if the body is just a tool that consciousness uses. If its just a tool then we have nothing to fear from death. Moreover, why continue to exist in a sick body when you can start over in a healthy one doing new things as a new person? Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.
     
  9. persuasion

    persuasion visitingmrssmith.com

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    Yes, I can see your point JalapenoLuv. The problem is that by dismissing the old or the ill as 'feeble, ineffectual...pathetic,' is that it makes it a lot harder for those who want to carry on (for our own reasons, despite the difficulties, perhaps because we have small children or because we just want to stick it out.....) to do so. It undermines our ability to keep going because to keep going we need self-esteem. And our self-esteem is constantly undermined by views like this.
     
  10. JalapenoLuv

    JalapenoLuv

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    That's true persuasion. If the norm for the elderly became euthanasia centers then the ones electing not to be euthanized would be questioned.
     
  11. Ren

    Ren .

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    A counter opinion to post #48:

    It's sinister to use a spiritual belief system to encourage people who need medical care to not seek and/or accept medical care. It's sinister to further justify this by citing global warming.

    Individuals with CFS are as worthy of healthcare and healthcare funds as any other individual or group of individuals who need healthcare. You (the reader) whoever you are: You are worthy of the goodness that humanity through the millennia through blood, sweat, and tears has discovered, developed, and preserved.

    Faith healing should not be enforced, and faith healing is not an ethical solution to the problems caused by modern consumerism and population explosion.
     
    Kenshin, jimells and Valentijn like this.
  12. jimells

    jimells Senior Member

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    There must be something seriously wrong with my cognitive abilities today. I keep thinking your message is suggesting that I should die in order to save money and save the planet from global warming. But that can't be right. No one here would ever suggest such a thing, I'm sure of that.
     
  13. persuasion

    persuasion visitingmrssmith.com

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    There's nothing wrong with voluntary euthanasia per se (though I do think there are question-marks surrounding the pressure the ill and old might feel to get rid of themselves due to the climate of functionality the world seems obsessed by at the moment). I don't think anyone would agree to involuntary euthanasia, surely!
     
  14. persuasion

    persuasion visitingmrssmith.com

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    There is definitely a feeling that ME/CFS patients shouldn't be bothering the medical profession (because they don't take us seriously). But also that not being able to be a productive person in the conventional sense (earning, providing, contributing to society) lowers our self-esteem and makes some of us feel we're not worthy.

    Of course, we are worthy, and actually even a person who lives entirely on their own - perhaps having no impact at all on anyone else or society at large - has worth.

    Plenty of examples of hermits being held up as worthy examples of the highest form of human.

    We shouldn't define our worth by the standards of 'normal' society because who says that 'normal' society is right?
     
    ahmo likes this.
  15. persuasion

    persuasion visitingmrssmith.com

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    I think it's just a feeling a lot of ill people get that why should we take up space because we're made to feel so useless. It's hard to feel useful if you're not being useful 'out there.'

    But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no harm is done.

    We've got to start believing that we have as much right as anyone else to be here even if the state has to support us. We live, thank goodness, in a relatively civilised society still.
     
    jimells likes this.
  16. jimells

    jimells Senior Member

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    Certainly for people working for the war machine doing nothing would result in much less suffering.

    Sometimes when I hear people complaining about slackers, I point out that perhaps they are fulfilling a very important role in society by being an example of how not to live. On the other hand, perhaps there really is a right to be lazy.

    Fifty years ago, when automation was just starting to affect manufacturing productivity, we were told how someday we would have leisure time and retirement because fewer workers would be needed to produce the stuff we need to live. Something happened to that idea and now it takes three jobs to support a family instead of the one it took when I was a kid. Instead of working to live, now we live to work, and the "Prime Directive" is Work or Starve.
     
    ahmo likes this.

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