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Mindfulness-based cognitive therapy for people w/ CFS still experiencing excessive fatigue after CBT

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 5, 2013.

  1. Esther12

    Esther12 Senior Member

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    There are things I like about 'mindfulness', but I'm deeply uncomfortable with the way in which it is being promoted as a medical intervention to be targeted at the sick. I think that we'd have more to gain from encouraging politicians and researchers to adopt a mindful approach to life than the sick and disabled.

    Ummm... it's a pain to write about 'mindfulness' without rambling. Thanks for the notes Dolphin.

    Lets hope any future trial will have some attempt at a 'placebo' group (something like homeopathy), and use a more objective measure of disability, like actometers. I'm not holding my breath though.
  2. Firestormm

    Firestormm Senior Member

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    I think there is a definite place for CBT/Mindfulness/talking therapy - call them what you will: these things can help a person from being driven insane through worry or indeed help rescue them from despair. I am with you Esther I think: that when it comes to seeing more and more money thrown at these experiments it does make me puke.
    Antares in NYC and peggy-sue like this.
  3. Esther12

    Esther12 Senior Member

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    Also, I think that we're losing the distinction between something like CBT as a medical intervention, and people's philosophical and ideological approaches to life. There are things I like about mindfulness, but I'm deeply uncomfortable about this being sold to the sick and disabled as a medical intervention. There are things I like about the deeper side of hiphop, and developing an appreciation for underground rap may well be shown to help improve the quality of people's lives in an RCT, but I think that it's important to leave this to individuals to decide for themselves rather than to start providing NHS group battle-rap sessions!

    CBT started as a clearly medical intervention intended to target those who had been shown to be suffering from distorted cognitions. Mindfulness was a particular philosophical/spiritual approach to life... it seems that they've both expanded to the point where they're over-lapping with one another.

    If society wants to help the sick and disabled improve their quality of life, then let them decide for themselves how to do this by providing them with greater resources (the opposite of what is happening) rather than paternalistically/manipulatively promoting the particular philosophical or behavioural responses that those with power have decided are the most appropriate. I've seen lots of patients talking about mindful approaches being helpful, and others who did not get on with it - like hiphop! I don't think that this is an area where the state should be intervening.

    We will all have different ways of dealing with hardship in our lives, and these different approaches will also have important moral and political consequences. The NHS is unlikely to ever promote an approach to life which encourages mistreated patients to feel angry, or commit their time and energy to pursuing accountability and justice. Even for NHS staff, there seems to have been a pattern of psychologising whistle-blowers concerned about NHS failings, and classing them as mentally ill, obsessive and dysfunctional. Far more mentally healthy to be passive, accepting and docile!

    There seems to be an utter lack of caution (from within the systems responsible to this approach) with regards to the state medicalising the cognitions, behaviours and moral commitments of the sick and disabled; even when the evidence that this brings real medical benefits is so tenuous. CFS might be a key point on the frontier with this dispute, but I'm more concerned about the wider social implications than just the opportunity cost of lost CFS research funding. With the current biopsychosocial welfare reforms, we have a clear example as to how this approach is used as an excuse to mistreat people, but even without this, I think that anyone could have predicted that abuses of this expansion of medical and political power were likely.

    Seems I was right!
    Roy S, Firestormm, Dolphin and 2 others like this.
  4. user9876

    user9876 Senior Member

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    In which case the next BPS trials will be graded battle rap (GBR) where ME patients have to add an extra line to their rap each day.
    Dolphin likes this.
  5. Simon

    Simon

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    Mindfulness CBT shows only modest gain in fatigue and no gains in physical function vs baseline - when compared with PACE control.

    btw, full text here: Mindfulness-Based Cognitive Therapy for People with Chronic Fatigue Syndrome

    In this study there was no active control group eg relaxation therapy (just waiting list), and no control group at all for 6 months follow-up, only at 2 months (as waiting list patients were getting treatment by then). Comparing MCBT at 6 months with baseline is of limited value as pre/post comparisons are considered flawed.

    So, to give a more useful feel for the real gains in this study, I've compared the results for MCBT at 6 months (vs baseline) with the PACE SMC (control) group at 6 months vs baseline:

    Chalder Fatigue
    PACE SMC: 28.3 -> 24.0 = -4.3
    MCBT : 25.4 -> 17.3 = -8.1 (-3.9 points better than PACE)

    Physical Function
    PACE SMC: 39.2 -> 48.4 = +9.2
    MCBT :61.6 -> 70.0 = +8.4 (no different to PACE)

    It is arguable that as these patients had already been through CBT and not improved, they are less likely to improve anyway (even in terms of natural course of illness). Nonetheless, a modest gain in fatigue and no gain in physical function doesn't exactly make a compelling case for a big trial of MBCT.


    Mindfulness vs CBT - are they really complementary?
    Both CBT and mindfulness have awareness of your own thoughts as a central part of the process. Where they differ is in how you handle the noticed thoughts. In mindfulness, you simply meet the thoughts in a non-judgemental way, with compassionate awareness 'looks like I'm fearful of..'. CBT instead aims to control and correct thoughts: 'oh, I'm catastrophising, let me look at things in a more postivie way'; judgement is a core part of the process. And I'm not sure the mindfulness approach really fits with the CBT model outlined by the authors, despite their best attempt to marry what seems to me to be largely conflicting approaches.

    And mindfulnesses ongoing awareness is likely to lead to greater awareness of symptoms, wheras CBT encourages ignoring them and pressing on if the said activity is within the agreed programme. In the same scenario mindfulness would be fully aware of symptoms arising and would encourage a thoughtful response to them - neither a panic decision to stop nor a carry-on-regardless attitude.

    Dislosure: Have to admit that I am a bit of a mindfulness fan myself, and find it particularly good for dealing with chronic pain. John Kabat Zinn's Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, which describes the first use of mindfulness in mainstream medicine, came out not long after I got ill. But as others have noted it is a coping technique (or even lifestyle) meant to improve people's feeling of wellbeing, or minimise suffering, not to improve their health.
    Dolphin, Bob, Esther12 and 1 other person like this.
  6. Dolphin

    Dolphin Senior Member

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    Thanks for link. I've now added it to the first post of the thread. It's another one which Google Scholar didn't highlight as available for free.
  7. ukxmrv

    ukxmrv Senior Member

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    I met a patient a while back who has been prescribed "Mindfulness" by a doctor at one of the UK "CFS" clinics. She has been told that her symptoms are entirely due to an excess of Adrenaline in her system and that Mindfulness will reset that production and although it can take a year or two will be a cure.

    What appears to happen is that patients are given a series of tests at this clinic, they are not told what the tests are, they are then told that their tests are clear and that "everything" has been tested for.

    Then without testing their standing BP or their blood levels of Adrenaline or being seen by an Endocrinologist a reason has been given for their CFS symptoms (which in the case of this patient fatigue, difficulty standing and pain predominate) of this high Adrenaline production.

    This patient has not been offered any other symptom investigations (like a Tilt Table test) or any medications for pain or any instructions on pacing etc.

    What it does is get rid of the patient for a year or more from the Clinic and from further investigations with what they think is a full explanation for their symptoms.
  8. IreneF

    IreneF Senior Member

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    That's amusing. I am sensitive to the "epi" (adrenaline) that is added to dental anesthesia ("novocaine"). Unless I remind the dentist to make sure I get a shot without the epi, I get a pounding heart, a desire to leap out of the chair and run, and other unpleasant sensations. None of them are at all like what I recognize as CFS symptoms. I don't think mindfullness would have any effect on my reactions. In other words, what a crock.
  9. IreneF

    IreneF Senior Member

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    I am also about to start a self-management plan for CFS and fibro. Got the book. Nothing new, but I'm reserving judgement right now.

    www.cfidsselfhelp.org
  10. Dolphin

    Dolphin Senior Member

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    This study http://forums.phoenixrising.me/inde...-and-insulin-stressors-in-cfs-patients.23819/ found lower baseline levels of adrenaline (aka epinephrine) in those with CFS and also a smaller increase with exercise. If mindfulness decreases adrenaline, that would make the difference bigger.
    Esther12 likes this.

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