Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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The impact of significant other expressed emotion on patient outcomes in chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by JoanDublin, Sep 4, 2014.

  1. JoanDublin

    JoanDublin Senior Member

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    Dublin, Ireland
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  2. A.B.

    A.B. Senior Member

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    Psychology teaches significant others to emotionally abuse patients, by telling them it's psychological issue that patients can solve if only they want to. Of course psychological interventions cannot cure illness, and the outcome is that the patient will be blamed for the therapy not working. The idea that psychosomatic illness exists is equally damaging. All this leads to unnecessary suffering, expenses and delays. It's a tragedy.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    I'm not sure about this and might be reading it incorrectly? Are they saying (as an example) that patients who have a partner that is high critical and expresses other hostile emotions to the patient results in them being more disabled, depressed etc?

    Might it not be the case that having ME and being trapped with a critical, aggressive partner might cause depression in some? It might be harder for a PWME to leave a partner.

    However, how could it cause more disability and fatigue (apart from if they had depression from an abusive partner?).

    I've had good and bad partners through my three decades of this disease but I have not noticed an change to my physical health.
     
  4. JoanDublin

    JoanDublin Senior Member

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    @ukxmrv To be honest they are saying very little. Of course one is going to 'feel' worse if a partner is being abusive. Thats not rocket science and certainly doesnt warrant a study IMO. To me it's just another attempt to tie psychological issues into ME/CFS . Its a bit like carrying out a study on women living in domestic violence situations and saying that they have poorer outcomes than a control group of single women living alone
     
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  5. Valentijn

    Valentijn Senior Member

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    Alison Wearden is an entrenched member of the BPS (psychosomatic) school of thought regarding ME/CFS. In this study they were expecting that empathy (High-EE-EOI/HEE-EOI) from partners and parents of ME patients would make us sicker, since there's some old crap from their pals claiming as much, though I think lacking much (any?) basis.

    Instead they found that critical (High-EE-C/HEE-C) partners and parents make ME/CFS patients more depressed. Like, duh :rolleyes: Though they seem to be overstating things quite a bit in the abstract by not distinguishing between critical and "overly" helpful partners and patients, and simply saying that HEE causes worse problems.

    They also claim that NICE recommends less supportive behavior from significant others, but I don't think that's true?
     
    Last edited: Sep 5, 2014
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  6. Cheshire

    Cheshire Senior Member

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    No control group. So the data don't make any sense, since we don't know if it's the case for MS or cancer patients.

    Yes, our illness is due not only to our poor coping style, our neurotic personality and so on, but also to our family and friends. If they support us, they are overprotective, if they are critical, they can lead to depression.

    If we are sick, it's because we live in a dysfunctional environment, because if our environment wasn't dysfunctional, we wouldn't be sick.

    With such a circular reasoning, everything is used against us, and is always a matter of too much or not enough, because if we did correctly we wouldn't be ill.
     
    Last edited: Sep 5, 2014
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  7. alex3619

    alex3619 Senior Member

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    This is the social part of BPS. Got to support every part of the theory ... oh, except produce lots on psycho parts and just the occasional tidbit on bio or social.
     
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  8. A.B.

    A.B. Senior Member

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    If they actually sat down and listened to a few patients they would never have gotten this bizarre idea that supportive friends and family make the situation worse. Or maybe they did listen but operate under the assumption that whatever the patient says must be wrong.
     
  9. Valentijn

    Valentijn Senior Member

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    They talk to patients, but they don't really listen to them. Their internal delusions are drowning out everything the patient says.
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    Of course much of this fails to explain anything about the outcomes of many PWC who don't live with significant others.
     
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  11. *GG*

    *GG* Senior Member

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    Sounds like a pretty useless study to me, know matter how you look at it!

    GG
     
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