The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Psychiatrists -- People with authority and PACE.

Discussion in 'General ME/CFS Discussion' started by Sasha, Dec 18, 2015.

  1. Sasha

    Sasha Fine, thank you

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    This thread has been split from -- http://forums.phoenixrising.me/inde...ditor-richard-smiths-blog-post-on-pace.41853/. If somebody can up with a better title, let me know.

    A problem with subjective measures in PACE is that any control condition would have had to have dealt with the issue of blame for failure of the treatment. With CBT and GET, where patients were told that it was within their power to recover by their own efforts, and they were then assessed face-to-face (at 52 weeks, not at long-term), the obvious corollary of that is that if they didn't recover it was their own damn fault for not trying hard enough. Under that kind of pressure, they're going to inflate their ratings when assessed non-blind. Very hard to control for that.

    One thing that concerns me about PACE is that patients weren't debriefed at the end. They've left a lot of patients having been repeatedly told by people in positions of authority over six months into thinking they could recover through their own efforts. It's clear from the summary table that the vast majority were still very ill at the end. The patients must feel awful about themselves.

    I suspect we're a bit off-topic again, though. Maybe we should start a new thread if we want to go down this particular rabbit-hole.
     
    Last edited by a moderator: Dec 18, 2015
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  2. EllenGB

    EllenGB

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    There is no brainwashing involved in CBT. You are offered a different explanation for your symptoms which you can accept or reject. If you have evidence to the contrary, please contact the GMC. Just correcting an unhelpful and inaccurate point.
     
  3. Sasha

    Sasha Fine, thank you

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    Thank you, Ellen - I've replaced "brainwashing" with "having been repeatedly told by people in positions of authority " in my post.
     
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  4. EllenGB

    EllenGB

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    Therapists as people in authority? Not unless you've been sectioned. It's an equal relationship where one person with experience helps another who might lack that. You explore together, agree on things. It's all in the PACE manual. You can say a lot about PACE but not that there was brainwashing.
     
  5. Sasha

    Sasha Fine, thank you

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    I said, "people in positions of authority" and therapists do indeed hold positions of authority (that is, presumed expertise, rather than the right to imprison or impose sanctions).

    A relationship where one person is a presumed expert in a topic and another isn't and the relationship is all about that topic is not, I would suggest, an equal relationship. And when it comes to ME, where a health professional is telling a sick and vulnerable patient that they've maintained their own illness by a set of false beliefs, I think it's very hard to see that as an equal relationship.

    I was using "brainwashing" in its colloquial sense but since you took it literally and considered the use of the word to be both unhelpful and inaccurate, I edited it out, as I already said.
     
  6. EllenGB

    EllenGB

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    Actually, when you talk to the patients, the vast majority speak highly of the staff. In all my years, I've heard nothing bad about the therapists and read about only one negative report re Prof. White. I don't know of any official complaints. As an old patient at Barts, I would have heard rumours of brainwashing. I've talked to enough patients (I was one and we swapped notes).
     
  7. Sasha

    Sasha Fine, thank you

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    Disapproving of the therapist would be an entirely separate issue.

    As I said:

    and

     
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  8. Scarecrow

    Scarecrow Revolting Peasant

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    I attended my local 'fatigue' clinic, which was one of the clinics involved in the PACE trial, around October 2011. It was proposed to me that I should do CBT (although I would have to arrange it myself). I asked the doctor to tell me what CBT was and why she thought it would help me. At the end of her explanation I said "That sounds an awful lot like brainwashing". She said "Yes, I suppose it is".
     
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  9. EllenGB

    EllenGB

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    I don't think they express it like that. If you read the manual, they really do try and offer you an alternative view. Like a concerned friend. We know it's daft but as one patient told me, 'it went in one ear and out the other.' I'm not sure how many of the participants were persuaded by the explanation. Don't even know how many followed the protocol re activity. We don't have the evidence e.g. from actigraphy. You might be sick and vulnerable, but how many lose their common sense?
     
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  10. EllenGB

    EllenGB

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    that's a first!
     
  11. Esther12

    Esther12

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    I completely disagree with this. One side is being paid for their expertise and making claims that are presented as being supported by scientific evidence. This is not an equal relationship.

    eg: from the PACE CBT manual:

     
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  12. Kina

    Kina

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  13. Kina

    Kina

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    I am sorry but therapists are absolutely in a position of authority. I know this from working on Psych wards and for other reasons related to my daughter. You don't have to be 'sectioned' to experience an unequal relationship with a therapist. PACE psychiatrists are in this group too -- how are they not abusing their power to tell patients to do CBT and GET. It's all about I am the doctor, you are the patient, I will tell you what to do, and you will listen and if you don't listen I will give you a diagnosis like "Borderline Personality Disorder" so you will never be taken seriously ever again (this happened to a friend of mine who refused anti-depressants as a treatment).
     
    Last edited: Dec 20, 2015
  14. John Mac

    John Mac Senior Member

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    Are you allowed to agree CBT is a complete waste of everybodys time?
     
  15. Hip

    Hip Senior Member

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    I think in the case of ME/CFS patients, who have a lot of frailty of mind and emotional hypersensitivity, a medical professional with a strong personality or adherence to a particular methodology can come over as an authority figure, even though to a healthy person the same doctor would seem quite normal and even quite empathetic.

    I think it is the mental state of ME/CFS patients that makes medical professionals come over as authority figures. In my case, I started finding visits to my GP hard going because it always seemed he towered above me in terms of stature and authority. Yet when I used to visit this very same doctor before I became ill with ME/CFS, I never felt he was an authority figure; I always found him a pleasant man, always felt that we met on equal terms, and that he was there to help me in a very cooperative manner.

    So I think the emotional hypersensitivity may create the image of an authority figure in the ME/CFS patient's mind, when in fact there may be none there.

    Nevertheless, even if this is just a perceived aura of authority, rather than a real one, it does have a very real effect on ME/CFS patients.
     
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    Not to mention that if the relationship is that of equals--more like a concerned friend--- then those with close personal friendships should be able to gain help and relief from accessing that relationship and discussing their health issues openly and honestly (easier to do with someone you trust and have an already existing relationship with).

    I can't imagine how one can view this as an equal relationship.
    There is also a very real difference between two healthy people engaging in this kind of dialog to one being compromised physically and cognitively.

    I am not the same person, I cannot sustain a conversation without fatigue my thought process is slow so that I cannot respond in a timely manner. These things make a difference just dealing with everyday matters--let alone how they affect dealing with someone who has a specific purpose in directing me to view things differently. I am at a disadvantage to be my own advocate to express what I'm thinking and feeling and how I perceive my experience.

    To say that this can be an relationship of equals is to not understand the effect illness (especially over a protracted period of time) has on the whole person.
     
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  17. Skippa

    Skippa Anti-BS

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    If CBT cures you, you ain't got CFS/ME.

    Simples.

    It can help COPE a little I suppose. But after all the CBT in the world, you're still stuck with your broken body.
     
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  18. DanME

    DanME Senior Member

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    Sorry, but I have to say something to this. CBT is not just offering a different explanation for your symptoms. CBT goes much further. CBT tries to change your maladaptive thinking, which usually leads to maladaptive behaviour. Or in other words, the therapist teaches you how to recondition your thoughts and tries to fix your cognitive distortions. CBT was and still is heavily influenced by the theories of conditioning.

    In depression this approach can be very effective. You replace bad (intrusive) thoughts over and over again with good or reasonable ones, until your mood follows. In a sense you "brainwash" yourself into believing new thoughts and eventually into adapting new behaviours. Sasha was a little polemic, but not entirely wrong. An important point is, that you have to trust your therapist, that he has identified the right cognitive distortions and intrusive bad thoughts, because for you those distortions seem to be completely reasonable.

    Finally, CBT is not harmless. Like any medical intervention, CBT can have serious side effects. This was ignored for a long time, but psychologists have started to look into that topic.
     
    Last edited: Dec 18, 2015
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  19. user9876

    user9876 Senior Member

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    There will often be authority issues in that people may be relying on doctors reports for benefits and they will assume this will relate to what therapists say.

    With children there is a big issue with ideas of therapists and authority since there can often be an underlying threat of child protection action.

    But more generally as someone who is meant to be part of the medical profession and a 'professional' they have an assumed authority.
     
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  20. Richard7

    Richard7 Senior Member

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    There are two types of authorities, authorities with respect to knowledge and authorities with respect to power. Doctors and other health professionals are often both.

    We go to doctors because we do not know what is wrong and expect them to know or be able to work it out. We go to them as authorities with respect to knowledge. When you read those GET materials they use this type of authority to assert that up is down, that the scientific consensus is that there is no physical problem other than being deconditioned.

    This is a strong abuse of authority, and before the internet, and without access to academic libraries imagine how we all might have suffered from such an abuse. Imagine too not only what it would be like for those of your intelligence/wisdom/education but people with every level of inteligence/wisdom/education and illness. You might be able to see the doctor as an equal who is just offering a second opinion but most don't.

    What is more we are not talking about doctors or other medical proffesionals who have made some passing remark on the street, these are people who have a duty of care to provide medical assistance/advice.

    Insurance companies and welfare also make them authorities with respect to power. When you go to a doctor asking for a sick note or a report so that you can apply for a pension they have the power of life and death. Think of that ATOS stuff with people being thrown of pensions etc.

    Haven't you even met a doctor playing his or her role as gatekeepers deciding wheather or not they think you a malingerer or one of the truly deserving. Haven't you noticed how highly they rate compliant patients, their biases against doctor shopping. I know that some of my decisions re therapy have being made out of a desire to stay on the good side of doctors who control my income.
     
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