Invest in ME Conference 12: First Class in Every Way
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Survivorship of severe medically unexplained symptoms in palliative care

Discussion in 'Other Health News and Research' started by Dolphin, Mar 4, 2017.

  1. Dolphin

    Dolphin Senior Member

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    http://spcare.bmj.com/content/early/2017/02/28/bmjspcare-2016-001294

    Underlined bit shows that medically unexplained symptoms is not a neutral term for many.
     
    Last edited: Mar 4, 2017
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  2. mrquasar

    mrquasar Senior Member

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    What an absolutely ludicrous definition! :mad:
     
  3. user9876

    user9876 Senior Member

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    I've not read the paper since it isn't freely available. But the thing that struck me was that 2 patients died yet they mention no reason. Is this just evidence that MUS is poor diagnosis in some cases - I wonder if an autopsy was done.
     
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  4. valentinelynx

    valentinelynx Senior Member

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    Most research papers are "freely available" if you know about sci.hub. For this paper, look here.
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This makes it plain just how confused these terms are.

    palliative care effectively means allowing people to die from fatal illness comfortably. If they believe that these patients are dying because of symptoms of psychological origin (as they do) then they are more or less admitting that they had a formal psychiatric illness. A formal psychiatric illness that entails irrational beliefs that lead to death is a delusional psychosis. There are effective treatments for psychosis. My wife very nearly died from symptoms based on irrational beliefs. She had effective treatment and is now perfectly well.

    It seems to me extraordinarily dangerous that this sort of non-science is now acceptable in peer reviewed journals.
     
  6. valentinelynx

    valentinelynx Senior Member

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    For more info about the deaths, I found this in the paper, under "Illustrative Case Vignettes."

    The first death was an OD, probably suicide:

    "A young female patient 1, who had never successfully managed to develop a life independent of her mother, was referred to community palliative care for end of life care with severe pain and shortness of breath her private physician had diagnosed as a ‘progressive neuromuscular disorder’. Escalating opioid use and increasingly frantic pleas for help lead to an urgent inpatient palliative care admission that revealed a history of an eating disorder, deceptive behaviour in which she feigned serious life-threatening illness and hostility to any notion of psychological underpinning in her presentations. Nursing staff were unsettled by her frequent requests for hugs, and she demanded opioid analgesia whenever distressed. Psychiatric review was arranged on the second day of her admission, where the scene that confronted the psychiatrist was of a chronically emaciated young woman whose mother was unable to leave her side. The patient’s mother gave a background of multiple reproductive losses in a relationship of torrid abuse, and total investment in every aspect of her only child’s life. The medical history was one of multiple severe unexplained symptoms that typically surged at developmental milestones that threatened separation from her mother. They spoke as a couple, and denied any psychological difficulties. The following day the patient fell twice and she and her mother demanded discharge. Once home, they quickly disengaged from community palliative care and returned to the referring physician. A follow-up 3 years later revealed that she had just died of a suspected overdose of prescribed medication."

    (One wonders if the patient had, rather than an eating disorder, an inability to tolerate eating, like many severe ME patients, or gastroparesis, untreated. So much of this history is someone's subjective interpretation of symptoms, without any objective findings that it is uninterpretable. It is possible the patient was truly as described, but without a real medical evaluation and work-up, it is impossible to know.)

    The second case is more bizarre. The cause of death is not given: "an unrelated cause":

    "Patient 2 is a 67-year-old man with a 30-year history of symptoms for which no convincing organic cause has been found despite multiple admissions to various hospitals with altered conscious states, seizure- like activity, abdominal pain and nausea. A tertiary neurological service made the diagnosis of vascular dementia which set the patient on the path to palliative care, and he was initially admitted for end of life care with weight loss, intractable pain and vomiting. His wife kept vigil. The focus on his body drew attention to some atypical features of his illness. He began to gain small amounts of weight despite not eating, and his seizures had a bizarre quality. He took discharge following a frank dialogue with the treating team, and finally consented to psychiatric review in his fourth admission. At assessment, a range of unusual features in his mental state were readily apparent. The patient would poke out his tongue whenever not speaking and would close his eyes only to open them and theatrically greet the interviewer as though encountering a dignitary. Cognitive testing revealed a pattern of approximate answers whereby mistakes seemed intentional. Spontaneous writing tasks resulted in gibberish scrawl, whereas memory tasks with a writing component yielded passable written English. The patient gave a personal history of severe early life deprivation and abuse, and an adult personality that centred on the provision of care, first taking in wards of the state and then later as a patient himself. Re-referral to the neurology service for diagnostic review confirmed the suspicion of factitious disorder. His referral to a community-based complex care team with mental health input was unsuccessful, and he continued to receive community palliative care with no diminution of his symptoms until his death 4 years later, of an unrelated cause."

    (This one sounds more truly psychological in etiology, although the clear bias of the authors is still a problem. Factitious disorders do exist (e.g. Munchausen's) and often have tragic outcomes. Sadly, our medical system is too ready to assign the label "Munchausen-by-proxy" to parents who are caring appropriately for their children who have so-called medically-unexplained symptoms, but there are indeed parents that cause harm to their children to gain medical attention. It's horrible, and should be pretty easy to distinguish from parents caring for a truly disabled child!)
     
  7. A.B.

    A.B. Senior Member

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    These case description are probably biased and not accurate. They are mostly a series of interpretations by individuals uninterested in possible alternatives. To see how reliable these interpretations are one needs only to look at papers from the 50's and 60's describing diseases such as rheumatoid arthritis as psychosomatic, and the patients as having all sorts of deep psychosocial problems supposedly causing the illness.

    No data is presented that shows that such an approach can actually help patients. The case descriptions don't sound like successes, quite the opposite. It sounds more like psychologising that patients find annoying and unhelpful.
     
    Last edited: Mar 5, 2017
  8. user9876

    user9876 Senior Member

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    So one looks like it could be a suicide whereas the other death was not investigated.

    With the first patient here they seem keener to blame the mother rather than describe actual symptoms and they say there was opioid use and an eating disorder. I assume the opioid use suggests chronic pain but they don't say why.

    The second death there description also aims to classify him as mad and they suggest factitious dis-order basically they claim he was making it all up but no details of diagnosis just that his symptoms followed unusual patterns. He was the other death and they claim an unrelated cause 4 years later but no details - with the later comment that it was not fully investigated. Which to me should bring up questions.

    Sounds like a third patient may have ME but not clear as the description is again mostly aimed at pulling out any strange behaviors rather then describing symptoms.


    More generally I find this paper very worrying. The authors seem to be basically making fun of the three (not 6) patients that they describe by picking out odd behaviours whilst not taking any symptoms seriously. There underlying message is to dismiss all patients whose symptoms cannot be well (and implicitly easily) characterized as having a simple cause. I suspect what they write her is more indicative of their attitudes and those of the doctors involved in the cases than of the patients themselves. To me it is a paper where the authors say we can pick out odd behaviours and make fun of patients why not do that as well to dismiss patients unless a clear diagnosis can be formed.

    There discussion has a paragraph which I read basically as saying poor doctors having to deal with the stress of failing to treat such patients.
     
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  9. alex3619

    alex3619 Senior Member

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    I suppose a null set would be a challenge.

    In a court of law the accused stands as presumed innocent unless proven guilty. (Excepting countries that do the opposite.) When described by media they use qualifying terms.

    There is no objective diagnostic method for MUSes. They are just presumed without sound evidence, based on old and obsolete ideas that have carried over into modern times. Its antiquated. The argument is basically they have complex symptoms, we don't know what is causing it (which is the key phrase), and there it must (must?) be psychiatric.

    The primary defense is that they are undoubtedly medically unexplained (but I doubt they are mostly inexplicable even under current science) because the doctors cannot explain them. Therefore how can anyone object to the term? If treated as unexplained, and needing better diagnostic work, then its fine. Yet its a pseudonym for psychogenic disease for many doctors. This is not fine.

    The second line of defense appears to be conflating two important ideas. No current diagnostic conclusion is conflated with no current evidence of pathophysiology, or possibly an implication that pathophysiology is irrelevant. Yet if you use research tools on many patients, such as ME patients, you find a great many things wrong that explain a great many symptoms. Just look at the current metabolomics work, and that is just the latest in a long line of testing going back to the Tilt Table Test from 1940.
     
    Last edited: Mar 5, 2017
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  10. mrquasar

    mrquasar Senior Member

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    This statement is so utterly illogical it infuriates me. The assumptions must be:

    1. We have blood or other tests for every possible disease in existence.
    2. Said patient has been subjected to every single one of these tests.

    Clearly these two conditions can never be met. Not intentionally, but just as a result of the immense complexity of the human body.

    What that means is that you can have scenarios where a psychiatric cause may seem much more likely, but you can never logically claim that the cause is for sure psychiatric.

    Plus there's the whole psychiatric-vs-physical / mind-vs-body argument.
     
  11. alex3619

    alex3619 Senior Member

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    I could say so very much more about failures in reasoning about psychogenic illness but I do not want to derail this thread. I have more than a few blogs on this here on PR.

    Let me just say that before every single disease we currently understand become understood, the claim it was psychogenic could have been made. The earliest such claim like this I am aware of was for tuberculosis.
     
  12. mrquasar

    mrquasar Senior Member

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    The other ridiculous thing about "conversion disorder" / psychogenic illness is that with every other psychiatric condition, the symptoms are clearly defined and self-contained. We know essentially how depression, bipolar disorder, schizophrenia, etc. manifest symptomologically. But the potential list of symptoms that fall under "conversion disorder" is infinite. Literally every describable mental and physical symptom known to man can fall under "conversion disorder". If the illness cannot be definied or limited symptomologically, the only logical conclusion is that it does not exist.
     
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  13. ukxmrv

    ukxmrv Senior Member

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    Plus doctors being taught that complicated and multi-symptom conditions are likely to be psycho-somatic. The number of symptoms a patient has the less likely it is to be a physical illness to them.
     
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