Clusters of strange sleeping sicknesses and other debilitating syndromes have confounded doctors, but new research suggests these and more common illnesses may have social and cultural roots. By Mark Broatch.
Nola lay in her bed, eyes closed, her face serene but pale, when London consultant neurologist Suzanne O'Sullivan was called in to assess her. Others went in and out of her room, the family dog nudging her hand, but the 10-year-old remained utterly unresponsive. Her older sister, Helan, lay in bed, too, though her eyes opened from time to time.
Nola had seemingly fallen into an unending "sleeping beauty" trance, needing to be fed by intubation, when her family, Yazidi refugees from Syria, were refused asylum to remain in Sweden. No one knew why, and O'Sullivan, who specialises in complex epilepsy and psychosomatic – often called psychogenic or functional – conditions, longed to find out.
For Nola and Helan are among nearly 200 children to lapse into these unexplained coma-like states in recent years in Sweden, cases that came to be known as resignation syndrome or uppgivenhetssyndrom. All were asylum-seekers' children.
First noticed in the late 1990s, the syndrome began with anxiety and depression, with the unresponsive sleep stage lasting between months and years. The children's CAT scans, blood tests, brainwave recordings and lumbar punctures came back normal, yet some, such as Nola, appeared to be in a state of arousal when examined.
Their common factor was persecution and flight from troubled circumstances in their homelands from the former USSR, the Balkans, Iraq, Syria and Roma and Uyghur areas. Most of the children had become integrated into Sweden and spoke the language. Most fell ill when their family's application for asylum was rejected.
If a family gained residency, their children usually woke up and recovered over time. The incidence appeared to rise as the Swedes tightened their asylum criteria.
The syndrome, long restricted to Sweden, has since been found among other refugee families in Nauru and Greece.
O'Sullivan, who won the Wellcome Prize for her first book, It's All in Your Head, was determined to reinvestigate these and other cases, which in earlier times may have been dismissively termed "mass hysteria" outbreaks, for her new book, The Sleeping Beauties: And other stories of mystery illness.
Her conclusions are both challenging and confounding. It's a neurological whodunnit with many possible suspects, including a physical illness manifesting as an appropriate response to the victim's plight.
Simplistically, Nola and Helan's future was uncertain, so they had, like other refugee children left in residency limbo, put themselves into psychological limbo. O'Sullivan says there are still few definitive solutions to the puzzle, but these mass disorders are indisputably "real" – however much she dislikes the term.
Whatever the cause, a coma is a coma. No child could sustain such a prolonged apathetic state as Nola's voluntarily, she says. Though the little girl was unresponsive and her blood pressure normal, her heart rate was high – that of a child in a state of emotional arousal.
"What was Nola's body preparing for?" O'Sullivan asked herself. Her teeth were clenched and she seemed to be resisting having her eyes opened. Was her illness unconscious or not?
A sociocultural phenomenon
Illness is a socially patterned behaviour far more than people realise, O'Sullivan says. "Up to a third of people attending any neurological clinic are likely to have a medical complaint that is psychosomatic.
"It seemed obvious to me ... that there was something to learn from the cultural specificity of the [resignation] disorder. It suggested that resignation syndrome may not be a biological or psychological illness in the Western sense; it may, in fact, be a sociocultural phenomenon."
She says syndromes like this affect specific cultures in certain time periods. To research it, she has travelled to Texas to meet migrants from a Central American Miskito community who suffered from irrationality and hallucinations as a result of grisi siknis – from the English phrase "crazy sickness". She went to upstate New York where a group of schoolgirls began to display Tourette-like symptoms that would develop into convulsions and seizures. She also explored a spate of deaths during sleep among the Hmong community in the US, and her book also traverses Haitian voodoo, Aboriginal bone pointing and Māori mākutu.
O'Sullivan sought to reframe the way we see such cultural manifestations.
"Western doctors tend to view illness in solely or predominantly biological terms. If someone has a pain in their chest, we search the heart and lungs for a cause before we consider other possibilities. If we decide that the problem could be psychological in nature, we then look at that person's emotional life for an answer."
As a neurologist concerned with ailments of the brain and nervous system, O'Sullivan was jolted to rethink the impact of her patients' external experiences after visiting Nola and Helan. It was a dauntingly broad mix of potential contributing factors.
"Family and peer groups we usually consider, but what about education, religion, cultural traditions, systems of healthcare, government and media?"
Clearly, a history of deprivation and stress had made the refugee resignation children vulnerable. "I couldn't imagine how it must have felt to a child to be told they would have to leave their home to go to a place that existed only as a horrific story." Their response had been "programmed" into them by their environment.
"It has been impacted by poor social circumstances, poor nutrition, epigenetics, abusers, authority figures, politicians, parents, doctors and the media. Without the correct combination of these, resignation syndrome would not exist." The children are "unconsciously playing out a sick role that has entered the folklore of their small community".
How these things spread
O'Sullivan resists others' suspicion of a copycat or attention-seeking aspect to these outbreaks. She says there are logical reasons they spread.
"[Resignation syndrome] took a really long time to spread from Sweden to Nauru and then Greece. But as soon as people become aware of particular sets of physical symptoms, as soon as a new medical condition becomes known, it is inevitable that people will – I don't necessarily mean in a deliberate way – employ them in some way to explain what's happening to them."
The suspicion of fakery hangs unfairly over psychosomatic disorders, O'Sullivan says. It hasn't been done on the resignation syndrome children, but if you do functional MRI scans on the brain of someone with a psychosomatic – and therefore subconsciously generated – disability and on those you ask to deliberately pretend, they are completely different. But close clinical observation of the resignation-syndrome children hasn't revealed any evidence of pretence, and there was no evidence of parents drugging the children, she says.
It simply seems that something in the early resignation children's response to their circumstances felt apt to more and more such children. O'Sullivan says it's common for anyone to begin to believe they, too, have a particular condition if it seems to be going around and appears to meet their set of concerns.
"Everything spreads. We're seeing the same thing in the Covid pandemic. Now if anyone feels tired or gets sick, the first thing you think is, 'Well, I probably had Covid'. I did it myself quite a lot last year and then I got over it."
She likens this even to people falsely claiming to have been in the World Trade Centre during the 9/11 attacks or pretending to have back pain so they can get out of work. It answers a need.
"You need only to create the condition and people who are desperate for answers or for help will relate to something in the condition and it will spread. But it has to remain effective in the community at the same time. If it's not getting the correct response, it will not continue to spread."
Not so great expectations
A vexing conundrum is what's known as predictive coding – the idea that people have certain expectations coded into their brains. "I see a lot of people with dissociative seizures and it really is all about their nervous systems being overwhelmed by their expectations. A patient will have one completely ordinary faint that could happen to anyone, but that then leads to a situation that the next time you feel a little bit of dizziness, your expectation is that after the dizziness comes this [fainting]. And you search your body for it.
"Certainly [for] a lot of people with functional neurological disorders, it is that overwhelming by their own expectations that is the problem. And the answer therefore is to change their expectations, to change how they react to that initial stimulus."
O'Sullivan instances a young female patient, "Sienna", who appeared to almost will herself sick. She'd received a clutch of previous diagnoses and insisted she had epilepsy, yet extensive brain and sleep-pattern tests showed no sign of it. Her expectations matched a perceived label.
O'Sullivan is exceptionally wary of medical labels. "There are a lot of young people [for whom] it's partially a medical problem and partially a social problem and a family problem. You can give a diagnosis, a medical label, to almost anything. But as soon as you give a label, then you're introducing the potential for those expectations. The first thing [the patient does] is go home and look up the other things that happen in the label, and it's very easy to then embody those expectations.
"When people's lives are going a bit wrong and they begin getting the physical symptoms that go along with that, that can be a sort of solution to a problem, your body trying to tell you that you're doing the wrong thing with your life. It's a lot easier sometimes for some people, depending on the sort of family background you come from, to say, 'Well, I couldn't do that because I got sick during it', rather than, 'I couldn't do that because I wasn't suited to it'.
"Certainly with Sienna, I felt that there was a difficulty accepting the imperfections or failures of life. And then doctors came along and really helped her with that by giving her lots of labels. And the more doctors you go to, the more labels you get.
"And I see teens all the time now with 10 different medical diagnoses, all of which I find spurious. But it's very hard to undo once it's been done."
She diagnosed Sienna with dissociation, accepting the risk that the simple act of medical classification "gave her an opportunity to embody a new sick role. That is Western medicine's culture-bound syndrome – we make sick people. We medicalise difference, even when no objective pathology is available to be found."
Perpetuating the problem
Her suspicion that Western medicalisation and labelling of psychosomatic disorders and syndromes actually perpetuate them deepened during her research. There's a miserably low 30 per cent recovery rate for the psychosomatic seizure patients she sees in London.
In the Miskito community, those with the still-mysterious but clearly manifest and contagious grisi siknis – which brings trances, irrational fear, social withdrawal and even causeless violence – almost always recover, and that's the case for many of the clusters she has studied round the world.
"I'm not in any way religious or spiritual, but I came away thinking, 'Wow, there's really something in that. Not necessarily in the belief system but in the support system around it.'" Some see the illness as not entirely negative. One woman says, "Grisi siknis is like a dream that cleans from the inside."
Still, it's difficult to tell people suffering from an illness that it may be all in their head, she says.
A recent media favourite is Havana syndrome, in which US officials stationed abroad believe Russian intelligence agents are aiming debilitating microwave devices at them.
"I cannot say that I know for certain what caused Havana syndrome, although it will not come as a surprise to learn that I agree strongly with the experts who said this was more like a functional neurological disorder or mass psychogenic illness than anything else."
Havana is very much in keeping with how socially driven illness outbreaks, such as a mass psychogenic illness, spread, she says. "Headaches and dizziness are common problems, and doctors don't always have a specific explanation for them. Once a new explanation becomes available for any medical complaint, it will be used by new sets of people to explain their own experience." People look for symptoms, and the media accelerate the spread.
From an early stage of Havana's apparent spread, experts said no such microwave weapon was known to exist, and medical experts were equally clear that sound did not, and probably could not, cause brain damage or persistent injury to the central nervous system. The symptoms of Havana's patient zero – dizziness, hearing impairment, fatigue – differed from those of the cases that followed but acted as a template.
The story was politically convenient and an exciting tale of spycraft and conspiracy.
"False beliefs, like the certainty of the existence of a sonic weapon, are at the heart of the development of many functional disorders. They create the expectations of illness that code themselves into the brain."
It is possible the first person was attacked in some way, O'Sullivan says. Or they could have developed the problems and associated them with an odd sound, in a case of recall bias. Or perhaps patient zero's illness was psychosomatic from the start, created by the anxiety of a suspected attack.
"Functional neurological disorders are usually anatomically and biologically impossible, a feature that is often central to making the diagnosis. The symptoms come from the unconscious and are based on people's understanding of how the body works – but those understandings are usually inaccurate."
The sympathy gulf
A further conundrum is the sympathy gulf for those thought to be suffering from "all in the head" issues. "We all lapse into calling organic problems, as in multiple sclerosis or epilepsy, real. And we call psychosomatic problems not real. But of course they are both real. They just have a completely different mechanism."
It's why people claim a migraine or upset stomach to get a day off, knowing that the truth, a need for time to recover their mental health, is likely to engender scepticism rather than sympathy.
"We've got children suffering psychologically all over the world at the moment through things like forced immigration. We're quite good at forgetting that. But if someone suffers physically, we're much more impressed by that.
"I think all illnesses have all those elements [biological, sociological and psychological]. I'm not sure this applies to all cultures, but in Western medicine, in the hospital I work in, you will get quicker, more intensive treatment, bigger teams and more respect from your friends, family, co-workers and the social-security service if you have epilepsy.
"If you have dissociative seizures, which are just as bad and every bit as disruptive to life, you will struggle to get all of those things. So, the world is telling us we should suffer in one way – it's a more effective way to ask for help, so we do that."
As for the resignation children, Nola and Helan are still asleep, their residency status still unresolved. O'Sullivan says most recovered sufferers won't talk about it. "[One girl] said it was like being in a dream that she didn't want to wake up from.
"Resignation syndrome is a language that I haven't yet learnt to speak. It exists to allow the girls [like Nola and Helan] to tell their story. Without it, they would be voiceless."
Curious culture-bound outbreaks of unusual affliction can occur anywhere and have a long history. The Alsace dancing plague happened in 1518, the jumping Frenchmen of Maine in the 19th century, and the laughter epidemic in Tanganyika in 1962.
In France these days, people come down with "heavy legs"; in Germany, "circulatory collapse". "I think they're all probably very similar, but with different names," neurologist Suzanne O'Sullivan says.
Other researchers have posited that hard-to-explain outbreaks such as the Salem witch trials, multiple personality disorder, Satanic panics and more recent rapid-onset gender dysphoria could be culture-bound disorders.
O'Sullivan says those phenomena are outside her sphere of expertise, but some eating disorders, for instance, appear to have an element of social contagion. "There have been waves of anorexia in particular communities and countries."
Depression also seems subject to varying cultural constructs. "Around the fringes of the diagnosis, Western societies are increasingly conceptualising ordinary sadness as a mental health problem that is talked about in terms of neurotransmitters and psychology. Other cultures are more inclined to see the milder versions of low mood as situational. It is worth questioning the value of our medical approach to low mood if it promotes chronic illness and makes people the powerless victim of biology."
As for curses, "these are deaths caused by an expectation". O'Sullivan tried to ask people in the Aboriginal community about the bone-pointing curse, but no one would talk about it.
Similarly culturally sensitive in te ao Māori is the mākutu. Before genetic testing isolated a rare variant for stomach cancer, some whānau believed a mākutu had been placed on them. In 2007, Wellingtonian Janet Moses, 22, drowned during a mākutu-lifting rite.
O'Sullivan offers some demystifying explanations for the "hysterics", "neurasthenia" and supernatural forces described in historical records, overwhelmingly attributed to women.
"Women faint more than men because they have lower blood pressure. And if you're wearing a big, tight corset in the 18th or 19th century, then you're more likely to faint. These things are easily mythologised, I think.
"Also, men and women express their emotional upset differently. Women are less inclined to end up in prison, fighting or with alcoholism. A lot of the young women I see [are] much more likely to faint; they have much more cyclical changes happening in their bodies, and these are the kinds of things that are misinterpreted and can lead to a functional disorder."
Other notable culture-bound disorders include:
• South Korea's hwabyeong – "fire illness" confers feelings of anger from unfairness; symptoms include a whole-body feeling of heat, anxiety and depression.
• France's heavy legs – French pharmacies have a slew of products to address "venous insufficiency", or fluid believed to be pooling in the legs.
• Germany's Kreislaufzusammenbruch – "circulatory collapse" makes people woozy or gives them Hörsturz, a sudden loss of hearing.
"'Psychosomatic' refers to real physical symptoms that cannot be explained by an organic pathology and are believed to have a psychological cause," O'Sullivan says.
"Psychological cause does not have to mean psychological trauma or stress. Psychological cause could be having to pay too much attention to your body, having false illness beliefs and so on. Essentially, the physical disability is real and is caused by a cognitive process related to psychology rather than an organic pathology.
"Functional neurological disorder is a term that has been created to take over from this term psychosomatic, because people really misunderstand, for the reasons I keep trying to emphasise. If you say psychosomatic to patients, they think, 'Oh, you think I'm crazy, you think I'm putting it on.'
"So the term functional neurological disorder dispels the assumption that everyone must have suffered psychological trauma to develop these disorders and is used to just imply that the nervous system isn't functioning properly. Personally, I am not crazy about it. It feels like it may be in itself a little stigmatising, because it's working so hard to put aside psychological mechanisms. I also see the value of it, as it makes no presumptions about cause.
"Dissociation is just a normal part of physiology that happens to all of us. It's the moment when you are overloaded and you read a page of a book and can't take it in or look at a news broadcast and you're specifically listening to one part but you keep having to rewind the tape because your mind keeps wandering away. We all get dissociation.
"But unfortunately for some of my patients, it can produce significant symptoms – dizziness, depersonalisation, derealisation – in the more psychological territory. My patients [have] seizures, blackouts, amnesia, forgetfulness and all sorts of cognitive symptoms.
"I feel that the basis for all functional psychosomatic disorders is these ordinary physiological processes such as dissociation that are in place specifically to protect us. They serve a purpose in our lives: to stop us getting overloaded, for example, or to keep us more focused on what we need to be focused on. It's when they go wrong that we start to get psychosomatic disorders."