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A new low in research? "Writing about CFS symptoms causes harm"

Discussion in 'Latest ME/CFS Research' started by Simon, Dec 18, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    Deliberately paying attention to symptoms seems to help me avoid exacerbating them.

    For example, I had worse pain problems in the first year that I was sick, and I tended to ignore it while focusing on whatever I was doing. When doing mindfulness meditation (which very deliberately focuses on sensations), I realized that 1) my muscles were hurting and 2) that pain was causing me tense them, which would cause more pain. When I realized what was happening, I could relax the muscles, thus reducing the pain. Hence my symptoms improve noticeably as a result of focusing on them, and get worse if I'm not paying attention to them.

    PEM and OI work very much the same way. The more self-aware I am, the better I can take steps to minimize the impact of them.

    I certainly don't fixate on my symptoms, but I do listen to them. Disregarding and denying symptoms is, I think, mentally unhealthy in any case, and especially likely to result in increased disability in ME/CFS patients.
    peggy-sue, biophile, Snowdrop and 8 others like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    An exception is, perhaps, chronic pain that doesn't seem to relate to anything the sufferer is doing, and which nothing seems to help with. Then distraction is crucial.
    peggy-sue, Izola and Tito like this.
  3. Bob

    Bob

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    I agree that focusing on pain can intensify the subjective experience of the pain. But mindfulness meditation can improve (decrease) the subjective experience of pain. Mindfulness meditation increases a person's awareness, generally, but it is an expansive awareness and so the meditator does not focus specifically on the pain. It's the expansive awareness that enables the pain experience to decrease. I just thought I'd mention it because I've experienced this myself in meditation. (But I'm not suggesting that meditation would resolve chronic pain.)
    Last edited: Dec 20, 2013
    Valentijn, Esther12 and Iquitos like this.
  4. xchocoholic

    xchocoholic Senior Member

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    In the last 8 years I've learned a lot about how my body works by paying close attention to my symptoms. It's saved me a lot of grief because I found triggers that I can simply avoid. And learned that my OI was behind most of the unwell feelings I'm still getting.

    For pain, I'm stuck using pain meds when it's severe and I can't lay down on ice packs. I went through natural child birth with my last child so I know how breathing techniques work but imho chronic pain can't be dealt with the same way.

    I thought it was ironic that psych researchers would consider expressing ones feelings a bad thing. That's pretty much the crux of psychotherapy. lol.

    tc ... x
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  5. Esther12

    Esther12 Senior Member

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    Yeah - and also, a lot of people find that letting go of their attempts to avoid feeling pain can improve their ability to manage symptoms.

    I expect that there's a lot of variety in these sorts of things, and also, a lot of room for miscommunication in how these terms are used.
    Wildcat, Izola and Bob like this.
  6. Simon

    Simon

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    I have to admit I'm not very good at meditating in general but I do find pain meditations immensely helpful when my pain gets really bad. Pain meditations focus on the pain itself, going into the pain - or the sensations that make up the pain - being aware of exactly how they feel, and change and move. Oddly, this can be very liberating, relaxing and simply the best means I have to reduce my pain. It helps that with pain meditations, every time your attention wanders, the pain is very good at bringing it back :).

    But this whole process could not be more different from CBT where symptom focusing is seen as the bad thing, in the same way as this research paper sees focuingon symptoms as a bad thing ie focusing on symptoms just makes them worse. This CBT perspective is a hopelessly simplistic and mechanical viewpoint.
    peggy-sue, biophile, Izola and 2 others like this.
  7. Firestormm

    Firestormm Senior Member

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    I attended a CBT and Mindfulness 8 week course run by the NHS so at least some parts of the NHS are using both :)
  8. Bob

    Bob

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    Of course, pain evolved as a protective mechanism, and we are not supposed to ignore it. Ignoring pain can lead to serious tissue damage and potential death.
    Last edited: Dec 20, 2013
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  9. Bob

    Bob

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    It's perverse to suggest that a patient group is ill because they have symptoms and are aware of the symptoms. In effect, their model of illness asserts that the illness is caused by its symptoms. Every other illness has symptoms that are caused by the illness, but CFS patients are a unique and special case (or simply an easy target for perverse and abusive medical theories) whereby the illness is caused by its symptoms! Er? What? Is that supposed to be science? It's circular nonsense, an abuse of science and an abuse of patients.
    Last edited: Dec 20, 2013
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  10. Bob

    Bob

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    Yes, that's how I start my meditations. I find the sensations get more intense to begin with as you begin to focus on specific areas of pain. But you allow yourself to fully experience all sensations without fear or mentally recoiling from negative sensations. i.e. you experience everything with acceptance. And then, as your focus widens to include all other aspects of awareness, the pain becomes a less prominent feature of your awareness and it diminishes.

    I agree.

    And it's also the opposite of the lightning process, which is a process of denial and self-imposing a positive mind-set upon one self.
    Last edited: Dec 20, 2013
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  11. Izola

    Izola Senior Member

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    I just evaluated him/them. They're ready for Lock Up. Stat.
    peggy-sue likes this.
  12. Izola

    Izola Senior Member

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    Ren; You have me rolling, laughing. coughing and choking in glee. Iz

    Attached Files:

  13. Ambrosia_angel

    Ambrosia_angel Senior Member

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    They probably all went to the doctor with fatigue the next week lol. I can feel another research paper coming on.

    To be honest we just have to take it in our stride and laugh at these people. No point of getting angry.
  14. Iquitos

    Iquitos Senior Member

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    Unless you're one of the patients, or the family of one, where these people sign papers that take the child away from the parents or have a patient forcibly commited to a mental institution, or aid an insurance company in evading paying disability.

    Psychobabblers' power to destroy lives greatly exceeds their grasp on reality.
    alex3619, peggy-sue, Wildcat and 6 others like this.
  15. Izola

    Izola Senior Member

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    I think we need to do something to skeer the sheet out of them. Iz
  16. leela

    leela Slow But Hopeful

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    I wonder, did the control group write about being dickheads?
  17. IreneF

    IreneF Senior Member

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    I think consistently ignoring my symptoms led me into a boom-and-bust spiral. I'm completely housebound now.
    A.B., Wildcat and Valentijn like this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm so sorry to hear that. It is all too common. Shocking then that 'therapists' are permitted to pressurise us to do exactly that. Is that not GBH?
    alex3619, Bob and Wildcat like this.

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