A blog from the Centre for Research Ethics & Bioethics (CRB)

Month: February 2016

Resignation syndrome in refugee children – a new hypothesis

Pär SegerdahlThere has been much discussion about the so-called “apathetic children” in families seeking asylum in Sweden. You read that right: in Sweden, not in other countries. By all accounts, these children are genuinely ill. They do not simulate total lack of willpower; like inability to eat, speak and move. They are in a life-threatening condition and show no reactions even to painful stimuli. But why do we have so many cases in Sweden and not in other countries?

Several hundred cases have been reported, which in 2014 led the Swedish National Board of Health and Welfare to introduce a new diagnosis: resignation syndrome. The “Swedish” syndrome appears to be a mystery, almost like a puzzle to crack. There are asylum seeking families all around the world: why does this syndrome occur to such an extent in a single country?

If you want to think more about this puzzling question, I recommended a new article in Frontiers in Behavioral Neuroscience, with Karl Sallin (PhD student at CRB) as first author. The article is long and technical, but for those interested, it is well worth the effort. It documents what is known about the syndrome and suggests a new hypothesis.

A common explanation of the syndrome is that it is a reaction to stress and depression. The explanation sounds intuitively reasonable, considering these children’s experiences. But if it were true, the syndrome should occur also in other countries. The mystery remains.

Another explanation is that the mother attempts to manage her trauma, her depression and her needs, by projecting her problems onto the child. The child, who experiences the mother as its only safety, adapts unconsciously and exhibits the symptoms that the mother treats the child as if it had. This explanation may also seem reasonable, especially considering another peculiarity of the syndrome: it does not affect unaccompanied refugee children, only children who arrive with their families. The problem is again: traumatized refugee families exist all around the world. So why is the syndrome common only in Sweden?

Now to Sallins’ hypothesis in the article. The hypothesis has two parts: one about the disease or diagnosis itself; and one about the cause of the disease, which may also explain the peculiar distribution.

After a review of symptoms and treatment response, Sallin suggests that we are not dealing with a new disease. The introduced diagnosis, “resignation syndrome,” is therefore inappropriate. We are dealing with a known diagnosis: catatonia, which is characterized by the same loss of motor skills. The children moreover seem to retain awareness, even though their immobility makes them seem unconscious. When they recover, they can often recall events that occurred while they were ill. They just cannot activate any motor skills. The catatonia hypothesis can be tested, Sallin suggests, by trying treatments with known responses in catatonic patients, and by performing PET scans of the brain.

The question then is: Why does catatonia arise only in refugee children in Sweden? That question brings us to the second part of the hypothesis, which has some similarities with the theory that the mother affects the child psychologically to exhibit symptoms: really have them, not only simulate them!

Here we might make a comparison with placebo and nocebo effects. If it is believed that a pill will have a certain impact on health – positive or negative – the effect can be produced even if the pill contains only a medically inactive substance. Probably, electromagnetic hypersensitivity is a phenomenon of this kind, having psychological causes: a nocebo effect.

The article enumerates cases where it can be suspected that catatonia-like conditions are caused psychologically: unexpected, unexplained sudden death after cancer diagnosis; death epidemics in situations of war and captivity characterized by hopelessness; acute or prolonged death after the utterance of magic death spells (known from several cultures).

The hypothesis is that life-threatening catatonia in refugee children is caused psychologically, in a certain cultural environment. Alternatively, one could say that catatonia is caused in the meeting between certain cultures and Swedish conditions, since it is more common in children from certain parts of the world. We are dealing with a culture bound psychogenesis.

Sallin compares with an outbreak of “hysteria” during the latter part of the 1800s, in connection with Jean-Martin Charcot’s famous demonstrations of hysterical patients, and where colorful symptom descriptions circulated in the press. Charcot first suggested that hysteria had organic causes. But when he later began to talk about psychological factors behind the symptoms, the number of cases of hysteria dropped.

(Perhaps I should point out that Sallin emphasizes that psychological causes are not to be understood in terms of a mind/body dualism.)

It remains to be examined exactly how meeting Swedish conditions contribute to psychologically caused catatonia in children in certain refugee families. But if I understand Sallin correctly, he thinks that the spread of symptom descriptions through mass media, and the ongoing practice of treating “children with resignation syndrome,” might be essential in this context.

If this is true, it creates an ethical problem mentioned in the article. There is no alternative to offering these children treatment: they cannot survive without tube feeding. But offering treatment also causes new cases.

Yes, these children must, of course, be offered care. But maybe Sallin, just by proposing psychological causes of the symptoms, has already contributed to reducing the number of cases in the future. Assuming that his hypothesis of a culture bound psychogenesis is true, of course.

What a fascinating interplay between belief and truth!

Pär Segerdahl

Sallin, K., Lagercrantz, H., Evers, K., Engström, I., Hjern, A., Petrovic, P., Resignation Syndrome: Catatonia? Culture-Bound? Frontiers in Behavioral Neuroscience 29, January 2016

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Macchiarini and the spirit of fraudulence

Pär SegerdahlI assume you heard of Paolo Macchiarini, the “star surgeon” who, with the willpower of a general, simply would win a great battle at the frontline of research – by creating new tracheae using the patients’ own stem cells. That the endeavor had costs in terms of a few soldiers’ or patients’ lives is sad, but some losses must be accepted if one is to win a major battle in the service of cutting-edge experimental research.

It is difficult to avoid such an interpretation of Macchiarini’s mindset, after seeing the Swedish TV-documentaries about him (“Experimenten”/”The Experiments”). You feel the presence of a dominating iron will to carry out a plan and to win. It feeds a warlike spirit in which collegial doubts must be suppressed because they corrupt the morale and slow down the march forward, toward the frontline.

Truth is, as we know, the first casualty of war. Losses must be described as successes, in order not to lose readiness for action in the final battle – which, of course, will be won, don’t for a moment doubt that! The condition of patients who after surgery barely can breathe must thus be described as if the surgery had given them a nearly normal respiratory function. Macchiarini’s misconduct follows the logic of war.

Imagine this rigid winner, waiting impatiently for patients for whom his unproven methods (with some good will) could be interpreted as a last chance to survive. Does he approach the patients as a doctor who wants to offer a last treatment option? Hardly, but the possibility of interpreting the situation in such a way takes him to the frontline: he gets the opportunity to operate on them.

Does he then relate to the patients as a researcher to his participants? Not that either. For the treatment is only improvised in the heat of battle and can hardly even be called experimental; and all failures will be covered up by more scientific fraudulence.

The fact that research ethics developed in the shadow of the Second World War is hardly a coincidence. Something that worries in the Macchiarini case is that research itself – with its competition for funding and more – obviously can be animated by a warlike and strategic spirit of winning, which corrupts individuals as well as institutions…

It goes without saying that suspected research misconduct should not be investigated by the universities themselves; that there is a need for an independent body that handles such matters.

Pär Segerdahl

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Tired of the human?

Pär SegerdahlI have on several occasions encountered what could be called: impatience with the human. Haven’t we been humans long enough? Is it not high time that we stopped to perceive the world from our parochial human perspectives, where the sun “rises” every morning and warms us – as if it cared about us!

We speak of beneficial bacteria in the intestinal flora, as if they took care of us as our inner servants. But what do they care about us? We are grossly anthropocentric. It is time to leave this human idyll and become… posthuman. – At least in serious, intellectual contexts.

The parochial illusion in which we supposedly live is often associated with language. Millennia of human endeavor have been deposited in linguistic structures that constantly repeat the same old spectacle in front of our eyes: the world as seen from a human point of view.

The time is ripe for a revolt against our homespun linguistic tradition; for the construction of new materialistic language, free of inherited folk perspectives on a fundamentally indifferent universe, and on us. – At least in serious, intellectual contexts.

The only problem is that even language, if we are to be consistent, must be a piece of folklore. Entities like language, words, statements, and meanings obviously belong to – if we are to be completely consistent – an oral tradition where we, for utterly mundane purposes, talk about “language,” “words,” “statements,” and “meanings.”

It suddenly seems unexpectedly difficult to go beyond the human. There is no language to rebel against. Or the illusion is too powerful: we cannot even speak of resisting it without relying on it. For the very idea of a ​​revolt, the exciting feeling of being near the truth or on its track… is this not all too familiar, all too human? Even more folklore, then?

Perhaps we should rather be impatient with this metaphysical intellectualism, which not very clear-sightedly – it seems – dreams of beholding an absolutely pure reality.

We continue to be humans who sometimes, for various purposes, describe a material reality and take it into account. – Even in serious, intellectual contexts.

Pär Segerdahl

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