The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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CFS is the result of "the nocebo effect"

Discussion in 'General ME/CFS News' started by Cheshire, Oct 17, 2015.

  1. Cheshire

    Cheshire Senior Member

    Last edited: Oct 17, 2015
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  2. A.B.

    A.B. Senior Member

    Can a diagnostic label intensify symptoms? Or can a diagnosis get the patient to think more about their symptoms and report them more often? Or are doctors seeing a phenomenon that isn't real but merely the result of their own biases and expectations?

    And who exactly is harmed by the diagnosis? Could it be a particular branch of psychiatry that fears medical explanations could take their monopoly over some patient groups away?
    Last edited: Oct 17, 2015
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  3. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    Just out, too. And only £68 in hardback. That's Christmas taken care of, then.

    Edit: cancel that. Just thought, if I read this book can I catch overdiagnosis?

    First six years I was ill I refused even to consider that I was ill. I avoided doctors in case they did give me a diagnosis. Tried to carry on as normal, started a business, kept trying to work ... and ended up housebound. But think how much worse I would have been if I'd had a diagnosis!! Lucky escape there.
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  4. user9876

    user9876 Senior Member

    There is another thing where giving a diagnosis along with questions or an explanation of symptoms can give patients a language to express their symptoms which would otherwise go unsubscribed or lumped into a general illness feeling which gets translated in a doctors description as 'fatigue'.
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  5. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Given the that the book is mostly speculation without high quality studies to back it up, one could argue that if the author is claiming it is more than a hypothesis, then he must himself be a victim of circular thinking.

    Oh and apart from SW, he also cites Showalter's Hystories extensively (another book you should avoid reading).

    See also
    How about: the 'placebo effect' is just a consequence of several biases that affect the reporting of symptoms, yet has no effect on the underlying disease or injury. This is why we have placebo-controlled trials. This is why measures of functioning, activity, and biomarkers are so important.
    See also, meta review of placebos:

    Side note:
    This guy isn't too popular with his students:
    Last edited: Oct 17, 2015
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  6. John Mac

    John Mac Senior Member

    Liverpool UK
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  7. beaker

    beaker ME/cfs 1986

    Of course, the IOM report thinks it is grossly under diagnosed. I think they hav e mote cred. then this person.
  8. Hutan

    Hutan Senior Member

    New Zealand
    I could only see a few extracts. But actually I have a (little) bit of sympathy with what is written about the over-pathologising of normal human experience.

    Eg the rush to diagnose someone as 'depressed' when they are just justifiably sad. And as a consequence the patient is given drugs that change brain function when they may just need someone to talk to and reassurance. The author points out that once given a diagnosis of depression and having recovered, you are much more likely to be given another diagnosis of depression later. Perhaps because you have a tendency to become depressed, but perhaps also because the GP has seen your history and is biased when evaluating later symptoms.

    Or, as another example, the 'oppositional defiance' label for kids that are misbehaving because they are having a really difficult childhood. The diagnostic label pathologises the child and justifies sedating drugs instead of work to fix their environment.

    And those abstracts given above - actually they make some valid points. Think about CBT in the PACE trial.
    Obviously though, he doesn't know much about ME/CFS.
    ahmo likes this.
  9. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Of course. The ethical way (based on the statistics/distribution of risks vs benefit effects of interventions) is to under-treat mildly effected patients and over-treat severe patients.

    He is assuming (without any evidence) that the patients who are showing up and getting diagnosis of clinical depression, CFS, Fibromyalgia, PTSD etc are not really impaired, but are simply making exaggerated claims about mild symptoms and day to day experiences.

    That is where I take exception - the idea that many/most of these patients are not debilitated by these illnesses.

    He is claiming that the strength of the placebo effect depends on how you do it. He is still claiming that it has important clinical effects and is worthwhile to be used in clinical practise. (rather than merely biases in reporting symptoms due to change in cognitions)
    Last edited: Oct 17, 2015
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  10. Webdog

    Webdog Senior Member

    The Nocebo Effect, Placebo’s Evil Twin
    Because of over screening and the diagnosis of contrived or harmless ills, the so-called nocebo effect is wreaking havoc on otherwise healthy people.

    It's all in your head

    In The Nocebo Effect, American essayist Stewart Justman writes about the devastating effects of nocebo in diagnoses as varying as anorexia, chronic fatigue syndrome, depression, dissociative identity disorder, hyperactivity, and cancers of the breast and prostate.

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