herenciageneticayenfermedad: BioEdge: Only in Sweden? But why? | Saturday, July 29, 2017

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BioEdge: Only in Sweden? But why? | Saturday, July 29, 2017 | BioEdge

Only in Sweden? But why?

by Thomas Jackson | 24 Jul 2017 | 2 comments

Child protection agencies all over the world should examine closely the epidemic of “Resignation Syndrome” among refugee children in Sweden. This bizarre phenomenon began in 2001 and continues to this day.

At least a thousand refugee children awaiting political asylum, and possibly many more, are affected. The children, aged 7 to 19, are unable to eat, speak and move. According to a recent study, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.

Unless they are given intensive nursing care, they will die.

In Swedish Board of Health and Welfare’s version of ICD-10, the diagnostic manual used by United Nations agencies, the children have been given diagnostic code F32.3A. The Board acknowledges that specialists disagree about the reason for the disease.

After asylum is granted most of the children recover after a few weeks or months. But about one in seven do not return to normal functioning.

The most puzzling aspect of this bizarre phenomenon is that it happens only in Sweden.

The issue has become highly controversial in Sweden, although it has hardly been reported elsewhere. The BMJ reported in 2008 that some doctors believed that the condition was “either a hoax or severe child abuse”.

Just what is going on?

The phenomenon emerged in 2001. Typically, the oldest child in an asylum-seeking family aged between 8 and 15 became seriously ill. The media dubbed them “apathetic children”. With more and more becoming sick, there were dramatic headlines in Swedish media accompanied by images of incontinent, tube-fed, mute children. Often they were slumped in wheelchairs or living in paediatric intensive care units. Some of the children existed in this state for years before their application for asylum was approved.

But there was another side to the story. A few years ago, some paediatricians complained that their parents begged them to insert a tube or their child would die. Occasionally there were reports that doctors were beaten up or harassed if they did not insert a tube. One nurse told the Svenska Dagbladet in 2005 that some of the children were far from “apathetic” and four or five staff were needed to insert a tube.

The number of ill children spread across Sweden. The common characteristic was that all of the children and their families were waiting for asylum.

By late 2005 the existence of the “apathetic children” had turned into a national political crisis. The media, churches and Islamic associations, the Red Cross, the Save The Children Association and many others frantically demanded immediate asylum for them. There were huge demonstrations in Stockholm and other cities. Under Swedish law a very ill child must be given asylum if he or she cannot be treated in their home country.

The government cast oil on the troubled waters by commissioning an expert report, “Asylum-seeking children with resignation syndrome: trauma, culture, the asylum process” which was published in April 2006.

Up to this point, there had been numerous stories in the media citing anonymous health staff and migration officers who claimed that adult asylum seekers in different ways were forcing the children to become apathetic. One doctor, Tomas Eriksson, now deceased, insisted that he had seen adults sedating the children with liquid medicine. Eight cases were reported to the police by social authorities and migration officers. But the prosecutor could not find enough evidence as the children were mute and the adults denied it. The cases were dismissed and whistle-blowers were shame-stormed in the media.

It is at this point that I became involved. I am a psychiatrist and although none of my own patients were affected by this issue and I was working in England at the time, I was very interested in this very public controversy. I published my theory in Sweden’s largest medical newspaper, Dagens Medicin, "Group Malingering by Proxy” in January 2006.

In this article I questioned whether adult asylum seekers, even if they were understandably desperate, might be using their children as Trojan horses to gain asylum for the whole family. This was a case, I contended, of malingering by proxy (MAL-BP), a rare but documented psychiatric phenomenon in which a caregiver fabricates symptoms in a child, dependent adult, or pet. A recent article in the Journal of Forensic Sciences says that the motive for abusing humans is to get money and for abusing pets is to obtain medications.

The response to my theory was volcanic. The implication was that the children’s parents were deliberately making their children sick or forcing them to feign sickness; the sub-text was that journalists and doctors had created a copycat epidemic. The theory was condemned as xenophobic. Dagens Medicin withdrew the article from its website after several months. (It can still be accessed in the Swedish Archive at the Royal Library in Stockholm.) I was vilified as a monocultural Christian who had refused to accept life in modern multicultural Sweden.

In 2009 I explained my theory at greater length in a self-published book, Copycatbarnen (Copycat Kids). The media boycotted it.

But this still left this only-in-Sweden phenomenon without an explanation.

A more acceptable one was not long in coming. Paediatricians at the famous Karolinska Institute in Stockholm attributed the symptoms to a kind of late-onset post-traumatic stress syndrome. The first name for this was “pervasive refusal syndrome”, which was changed to “resignation syndrome” in 2014.

Whether or not I am right, it seems all but certain that the conventional wisdom in Sweden is wrong. After 16 years and thousands of apathetic children, paediatricians are no closer to finding a reason for a condition which exists only in Sweden and nowhere else in the world. Swedish researchers have not explained why they have ruled out MAL-BP.

But I think that we can all agree that finding an explanation is urgent. This is not just an academic storm in a teacup. The lives of thousands of children are being ruined. What will years of tube-feeding and miming catatonic behaviour do to them? It can only be destructive.

One extensive study was published in January 2016, “Resignation syndrome. Catatonia? Culture-Bound?” in Frontiers in Behavioural Neuroscience. This article presents a reasonably balanced overview of this issue and concludes that the best possible explanation is mass hysteria: the refugee children are suffering from a psychogenic illness tailored for people in their community.

However, like other Swedish studies, it omits MAL-BP as a possible explanation.

Why?

After years of argument, I believe that the only plausible explanation is that the possible existence of MAL-BP casts a shadow over Sweden’s refugee-friendly policies. The very idea that refugee parents might be physically abusing their children for their own benefit is taboo. Medicine and politics have met on the field of battle and politics has won. The victims are these refugee children and their wasted lives.

It is worth mentioning that in next-door Norway, there are no “apathetic” children. When a few cases did occur, Norwegian doctors immediately separated the adults from the children. They did not tube-feed them and the children recovered their health after a few weeks. But in Sweden, this solution is regarded as xenophobic.

Thomas Jackson MD, graduated in 1979 from the Karolinska Institutet in Stockholm. He is registered as a doctor in Sweden, Norway and the United Kingdom. He is a specialist in general adult psychiatry.

| Saturday, July 29, 2017 | BioEdge

We're back! And although the northern hemisphere summer is normally a slow-news season, bioethics has been on the front page of world newspapers.

The drama of the dying British baby Charlie Gard, his loving parents, the doctors at Great Ormond Street hospital in central London, and the English law has captured the imagination of people everywhere.

To be honest, I am not sure whose "side" I should be on. Parents should normally make healthcare decisions for their children.

But there are cases in which their choices are plainly wrong -- as a Swedish doctor suggests below in his version of the mysterious resdignation syndrome among refugee children -- and the advice of doctors should be heeded.

Which was the case here? We'd love to hear from you.