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Book published this week in UK referring to ME as psychosomatic

Discussion in 'General ME/CFS News' started by anniekim, Jun 8, 2015.

  1. anniekim

    anniekim Senior Member

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    A book has been published this week in the UK called 'It’s All in Your Head: True Stories of Imaginary Illness by Suzanne O'Sullivan, a neurologist. There is is a chapter in it - which I have not read - devoted to M.E with the author's conclusion M.E is psychosomatic. Sadly, the book has had many glowing reviews in the UK national press this week. The Times nominated it a Book of the Week and devoted much of its review to discussing the chapter on M.E. Here is the review:

    David Aaronovitch - The Times, 6 June 2015

    "There is an unusual tone that runs through this book from page 1 to page 315 — it is of patient, compassionate frustration. It is the tone of someone who has spent a quarter of a century carefully explaining to people — very ill people — what they do not want to hear, or to medical colleagues what they do not have the training to cope with. This unwanted explanation is that the illnesses the patients have are simultaneously real but have no physical origins, and they are products of the mind.

    A consultant neurologist at the National Hospital for Neurology and Neurosurgery, Suzanne O’Sullivan is the latest writer in what I think is a necessary and admirable new trend — that of physicians and practitioners sharing with readers the real experiences of their professions. This necessarily involves discussing case histories: histories which have to be disguised so that the individuals cannot be identified.

    So we can be sure that whoever the person was who formed the basis of the ME sufferer, Rachel in chapter seven, he or she was not called Rachel and had not been a student on a dance course at university. But I had no difficulty identifying the underlying truth of O’Sullivan’s encounter with such a person, because I have known two or three victims of the condition myself.

    So O’Sullivan’s “Rachel” was a sporty, fit, high-achieving young woman who started to feel strangely fatigued during her first year at college. She would drift off during lectures and began to experience pain in her muscles and joints. Tests, including a muscle biopsy, could find no cause for her condition, and yet it worsened. Within a year or so she had given up her course and was spending all day at her parents’ home, unable to move or even to eat. Her mother researched her condition on the internet and found other people with similar symptoms who were sufferers of “myalgic encephalomyelitis” or ME (sometimes known as chronic fatigue syndrome or CFS). The discovery came as a huge relief. At last they knew roughly what was wrong, even if they didn’t know what caused it.

    In her introduction to the chapter on Rachel, O’Sullivan admits that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least”. This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic — caused by the mind and not by a disease — is intensely hostile. I have experienced this hostility.

    As O’Sullivan points out, this hostility arises for three discrete reasons. First is the (essentially correctly perceived) problem that while a physical disease may be susceptible to a physical cure, through drugs or surgery, a psychological condition is inevitably harder to prescribe for. Second is the feeling that while one may not be “responsible” for a physical condition, a psychological one is somehow your own fault and is less serious. And the third is the stigma of madness that the patient themselves, or the world in general, may attach to a psychological condition. Yet, as O’Sullivan says, “the reality of how life-destroying this problem is cannot be argued with” and it must be given the “same respect that we offer to a physical disease”.

    Yet, if the patient is utterly opposed to a diagnosis that situates the problem in the mind, then they will not want to embark upon the kind of treatment that might help them. In which case, they are stuck. Completely stuck. “Unsticking” the patient, and the rest of us, is what, ultimately, this book is about.

    ME is just one of the possibly psychosomatic conditions that patients present with. O’Sullivan begins with cases of “pseudoseizures” — that is fits that resemble epileptic seizures, but which can be shown to have no physical origin. Her first patient, “Pauline”, has suffered 12 years of fitting and is now effectively paralysed. She has been repeatedly tested for numerous conditions, never successfully. “You go into hospital with stomach pains,” O’Sullivan reminds her, “and you come out in a wheelchair.” Might she now be ready to consider seeing a psychiatrist?

    Pauline is not rare. O’Sullivan says that as many as a “third of people seen in an average general neurology clinic have symptoms that cannot be explained by medical tests or examinations. In those people, an emotional cause is often suspected.” We know our minds create involuntary physical responses, such as blushing or crying (O’Sullivan does not mention some of our more indelicate parasympathetic responses), yet we resist the idea that illness could have a mental cause. We tend to believe that if the mind is involved we are either conscious of it, in which case we are con-artists and malingerers, or unconscious, in which case we are mad.

    But O’Sullivan says that the proportion of her patients who are dissimulators — who are “putting it on” — is small. Instead, she thinks that, for various reasons, our minds can express distress, without our being conscious of it, through our bodies. If we cannot recognise this possibility, then we cannot deal with it and so are fated, instead, to undergo pointless operations, to take possibly harmful drugs and — almost invariably — to fail.

    As she points out, the association of the subconscious with physical illness is not new. In the late 19th and early 20th-centuries, pioneer neurologists, like Jean-Martin Charcot, psychologists, like Pierre Janet, and psychotherapists, like Sigmund Freud, studied and theorised about how the unconscious mind works. And one, very general, conclusion was that illness could be a drastic “way out” or diversion from underlying mental distress that the patient could not confront.

    However, O’Sullivan adds another kind of possibility. She notes that something like 70 per cent of patients who present with inexplicable conditions are female. Why is this? She speculates that because women are more likely to suffer traumatic sexual abuse, perhaps then physical illness is some sort of response to that. But she also wonders whether we aren’t immensely vulnerable to our own suggestibility. I feel a twinge in my back. I might take no notice of it, or I might look it up online. If I do the latter, perhaps I notice another associated pain which I also half think I had. And so on.

    The fact is, as O’Sullivan admits in this honest, fascinating and necessary book, that we just do not know. Perhaps, one day, with the advance of neuroscience, we will. And perhaps we won’t. But, at the very least, we should keep an open mind.

    It’s All in Your Head: True Stories of Imaginary Illness by Suzanne O’Sullivan, Chatto and Windus, 315pp, £16.99. To buy this book for £14.99, visitthetimes.co.uk/bookshop or call 0845 2712134"
     
    Scarecrow, Aurator, MEMum and 2 others like this.
  2. worldbackwards

    worldbackwards A unique snowflake

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    Irony alert there.
     
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  3. Sasha

    Sasha Fine, thank you

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    She was on R4's Start the Week this morning.
     
  4. Revel

    Revel Senior Member

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    Much as I enjoy a good read, with the exception of Alice in Wonderland, I tend to steer clear of fiction.
     
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  5. SilverbladeTE

    SilverbladeTE Senior Member

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    She should be taken to court and sued, because there is legal precedent in the UK that M.E. is a *lethal* disease and thus she as a doctor is spouting negligent and prejudicial material likely to cause the harm or death of patients
    and I am DAMN bloody serious

    Sophia Mirza's death certificate = legal precedent.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    There have been several book reviews in the UK press over the past few days - the one in The Times causing a lot of discussion at the moment.

    I am in the final stages of preparing an MEA response to all this media publicity.

    This will be published on the MEA website this afternoon.
     
    alkt, WillowJ, leela and 33 others like this.
  7. angee111

    angee111

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    aqkldsbdjshdn !!! I am flabbergasted that this is a real thing. In 2015. In a supposedly "modern" country. Why exactly should we trust that the medical establishment has our best interests in mind, when they are spending so much time and energy publishing nonsense rather than much more fruitful clinical trials that may very well prove the illness is REAL???! It seems as if some professionals are more deadset on protecting their ego and using their status as a tool to convince society and patients that what they are experiencing is of their own conscious choosing simply because they cannot come up with another explanation. Victim blaming at its finest.
     
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  8. user9876

    user9876 Senior Member

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    You should send her a copy of the latest MEA report pointing out how much harm GET does to patients. I suspect she would dismiss it but I think it is important that we don't allow doctors to say but I didn't know it could be harmful.

    She seems to be doing quite a media blitz I wondered if the SMC are doing publicity for her?
     
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  9. anniekim

    anniekim Senior Member

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  10. SDSue

    SDSue Southeast

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    I don’t recall my last neurologist taking brain, ganglion, spinal cord, or other nerve tissue samples to rule out physiological causes for my neurological symptoms. Examining me by grossly assessing my cranial nerves hardly qualifies as comprehensive, and neurologists know that. They are the most impotent of all physicians - there’s really nothing they can do but toss drugs and harmful labels.
    Don’t get me started. Why do I read this crap? lol
     
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  11. Sasha

    Sasha Fine, thank you

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    Because there's no avoiding it. :eek::cry:
     
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  12. worldbackwards

    worldbackwards A unique snowflake

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    Sounds like @charles shepherd!
     
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  13. Sean

    Sean Senior Member

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    But apparently that can't be done with formal policy advice to governments from these same experts, and so it must be locked away from public scrutiny for several decades.

    The hypocrisy is astounding.
     
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  14. Sidereal

    Sidereal Senior Member

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    As I keep saying, neurologists are by far the WORST of all medical specialties. It's usually pompous old dilapidating male neurology consultants with egos bigger than their IQ spewing crap like this but this woman obviously learned from the "best".
     
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  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Can she be sued and if so how do we go about it? I'm clueless with legal stuff. :( This bullshit has got to stop, its draining and exhausting (at best)
     
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  16. Asa

    Asa Senior Member

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    Last edited: Jun 8, 2015
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  17. Sasha

    Sasha Fine, thank you

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    That sounds like a quality endeavour:

     
  18. jimells

    jimells Senior Member

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    It's quite frightening to think this "clinician" disregards the symptoms of a third of her patients. I feel sorry for any patient assigned to her clinic.
     
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  19. PeterPositive

    PeterPositive Senior Member

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    Here's the thing... if the cause is psychosomatic there ought to be evidence.
    That is, treating the psyche and obtaining a full recovery.

    How many documented cases are there that precisely show this happening?
     
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  20. snowathlete

    snowathlete

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    Disgraceful. Important to challenge it, so pleased to see some action from the UK charities on it.

    In some respects it's good that people like this have put their opinions in writing, so that history has a record of who the worst doctors are/were and their part in heaping additional suffering on patients, for their own personal gain.

    It won't be long, I believe, before such opinions are widely considered untenable and contrary to all the evidence.
     
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