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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Beyond Tired: Is chronic fatigue syndrome a real medical condition? (Neurology Now)

Discussion in 'General ME/CFS News' started by Dolphin, Oct 9, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Not to be confused with another article in Neurology Now:

    Contains comments from:


     
    Simon, Valentijn, rosie26 and 3 others like this.
  2. Dolphin

    Dolphin Senior Member

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    I dislike this:

    Dr Sabin:
    Evidence is generally from subjective measures. Not much in objective improvements found:
    ---
    Dr Sabin:
    It can also teach people inaccurate thoughts!
     
    snowathlete, Chrisb, mango and 8 others like this.
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The irony that he's recommending CBT to counter "inaccurate" thoughts, when his inaccurate thought about cfs is what needs to be corrected.

    Perhaps he should be in CBT therapy?
     
    alkt, jimells, ErdemX and 9 others like this.
  4. Bob

    Bob

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    I think there are a few unfortunate lines in this article, but it includes many helpful insights as well. There is much room for improvement, but I think it could be a thousand times worse, and it might help some clinicians as an introduction to CFS. If we think about the horrendous stuff that we've been subjected to in the past, I think this is a major improvement. But there's definitely room for further major improvements.
     
    Last edited: Oct 9, 2015
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  5. alex3619

    alex3619 Senior Member

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    Do we have any current or former CBT therapists here? Maybe we could market a CBT course to correct false therapist beliefs? It doesn't even have to be real, though if it were it would be even more ironic and useful.
     
    alkt, snowathlete, mango and 9 others like this.
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Oh, I like where your going - some clever person can whip up a website and tweeter and start spreading the word - one of those late night comedians should pick up on it.
     
    alkt, barbc56, alex3619 and 1 other person like this.
  7. Effi

    Effi Senior Member

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    Does anyone else find this extremely offensive? A lifestyle? :bang-head:
     
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  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    It's important to avoid making the disease a lifestyle, he says.

    Yeah, like those people living the MS lifestyle (pink font!)
     
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  9. alex3619

    alex3619 Senior Member

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    Yes. Insensitive, careless, over the top, deceptive, and yes, offensive. It needs to be highly qualified and explained, at best.

    I think this rests on the unproven concept, which has failed very badly so far, that how we cope with the disease perpetuates it, and especially that it is some variant of psychosomatic. However something else might have been meant.

    "Lifestyle choices" is something that has become an excuse to denigrate people in society. Sure there are lifestyle "choices" that are nearly all negative, such as severe drug abuse or alcoholism. Therefore other choices people make are always bad? Yet this ignores that many become addicted to drugs due to medical prescription, plus other things. It ignores that people in pain cannot get some of these drugs due to dogmatic restrictions. It ignores that sometimes people find solace in alcohol after terrible ordeals and no psychological support.

    Lets take overweight for example. There are hundreds of factors in gaining weight. Only some are lifestyle choices. One of the most damaging lifestyle choices here is probably following the government recommendations on diet for the last four decades. Its almost out of a "how to gain weight fast" booklet. So many factors are simply not understood as well. Why do lab animals, on strict and limited diets, keep gaining weight decade after decade? How many permitted additives, or medically prescribed drugs, have weight gain as a side effect? Why is it that many who are overweight eat much less than their normal weight peers? Its not simple, and we do not yet understand all the factors involved.
     
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  10. Bob

    Bob

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    Yes, I had a 'WTF' moment when I read that! It's utterly ridiculous.
    Like, we enjoy being in intense pain and unable to move, or use our brains, so much that we choose it as a lifestyle! Really?!
    Utter ignorance!
     
    Last edited: Oct 10, 2015
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  11. Sidereal

    Sidereal Senior Member

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    Extremely offensive. Oh how I wish I could forget about all this nonsense and simply choose a different "lifestyle".
     
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  12. Effi

    Effi Senior Member

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    Exactly! To me, a lifestyle choice is something you do for fun. Like the way you choose to dress, or what style of activities you engage in over the weekend (e.g. hiking vs. a posh party), or even going to live out in a cabin in the wilderness even though you have enough money to buy yourself a nice flat. Illness or other truly unpleasant situations can't be lifestyle choices. Nobody chooses to suffer.
     
    alkt, jimells, Debbie23 and 7 others like this.
  13. A.B.

    A.B. Senior Member

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    The lifestyle comment just demonstrates how out of touch these people are. They have literally no idea what this illness actually means. Baby steps and all.
     
    alkt, Debbie23, mango and 8 others like this.
  14. Effi

    Effi Senior Member

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    "I'm not going to live the Alzheimer's lifestyle anymore. I'll still forget things all the time, but I'll do some gradual memory training exercises, and I will stop caring about being forgetful. This will make me less forgetful." No one would ever say that. But for me/cfs it seems to be totally acceptable. :aghhh::vomit:
     
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  15. Bob

    Bob

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    Imagine if he'd said that cancer can be a lifestyle choice. He'd be disowned by the medical profession. But apparently it's OK for a patient population who can't rely on the media to defend them. It's actually a very good example of the prejudice we experience and the way we are denigrated, and also the stigma that certain factions of the medical profession like to project upon us. (It's such an good example, perhaps it could be highlighted in a letter to the journal.)
     
    alkt, snowathlete, mango and 10 others like this.
  16. JayBO

    JayBO

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    Sad and discouraging that this is the general state of knowledge regarding CFS, primitive quasi-medical information that ignores any current research on immune dysfunctions and other underlying medical causes. Obviously this is a poorly researched blog or column and not a scholarly article by any means. Unfortunately it continues to give people the wrong impression about this illness. That is why it's so important to find doctors who are sensitive to such issues, and can be harmful to discuss one's symptoms with those who are not.
     
    alkt, Effi, Sean and 1 other person like this.
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Yesssssssssssssssssssssss..... *he says like Jeremy Paxman*

    and having your nuts whacked of by a psychopath would also be a "life style choice" then, hm?
    varys game of thrones.jpg

    Varys is right, you know.


    Where do they find these assbags: "Meth-swamp-ville", "Nutlicker College", or perhaps they are part of the Mengele Fan Club!? :p
     
    alkt and JaimeS like this.
  18. Aurator

    Aurator Senior Member

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    Indeed. And a lifestyle is exactly what the decades-long failure by governments and healthcare systems to take ME/CFS seriously has inevitably made the disease into for so many patients; a lifestyle they've had forced upon them and don't want. The irony is surely lost on Dr Sabin.
     
    Last edited: Oct 9, 2015
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  19. Sean

    Sean Senior Member

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    Aaaaaaaaaaaaaaaarrrrrrrggggghhh!

    :mad::mad::mad::mad::mad::mad::mad::mad::mad::mad::mad::mad:
     
    alkt, Aurator, mango and 1 other person like this.
  20. SOC

    SOC Senior Member

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    It's important to avoid making ignorance and smug dismissiveness a lifestyle, I say.
     
    alkt, Aurator, worldbackwards and 8 others like this.

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