Neurology Center

A fascinating new paper: Morgellons Disease, or Antipsychotic-Responsive Delusional Parasitosis, in an HIV Patient: Beliefs in The Age of the Internet

(Mr A. had also been HIV+ for 20 years, but he still had good immune function and the HIV may have had nothing to do with the case.)

"Morgellons" is, according to people who say they suffer from it, a mysterious disease characterised by the feeling of parasites or insects moving underneath the skin, accompanied by skin lesions out of which emerge strange, brightly-coloured fibres or threads. Other symptoms include fatigue, aches and pains, and difficulty concentrating.

According to almost all doctors, there are no parasites, the lesions are caused by the patient's own scratching or attempts to dig out the non-existent critters, and the fibres come from clothes, carpets, or other textiles which the patient has somehow inserted into their own skin. It may seem unbelievable that someone could do this "unconsciously", but stranger things have happened.

As the authors of this paper, Freudenreich et al, say, Morgellons is a disease of the internet age. It was "discovered" in 2002 by a Mary Leitao, with Patient Zero being her own 2 year old son. Since then its fame, and the reported number of cases, has grown steadily - especially in California.

Delusional parasitosis is the opposite of Morgellons: doctors believe in it, but the people who have it, don't. It's seen in some mental disorders and is also quite common in abusers of certain drugs like methamphetamine. It feels like there are bugs beneath your skin. There aren't, but the belief that there are is very powerful.

This then is the raw material in most cases; what the concept of "Morgellons" adds is a theory, a social context and a set of expectations that helps make sense of the otherwise baffling symptoms. And as we know expectations, whether positive or negative, tend to be become experiences. The diagnosis doesn't create the symptoms out of nowhere but rather takes them and reshapes them into a coherent pattern.

As Freudenreich et al note, doctors may be tempted to argue with the patient - you don't have Morgellons, there's no such thing, it's absurd - but the whole point is that mainstream medicine couldn't explain the symptoms, which is why the patient turned to less orthodox ideas.

Remember the extensive tests that came up negative "to the patient’s great frustration." And remember that "delusional parasitosis" is not an explanation, just a description, of the symptoms. To diagnose someone with that is saying "We've no idea why but you've imagined this". True, maybe, but not very palatable.

Rather, they say, doctors should just suggest that maybe there's something else going on, and should prescribe a treatment on that basis. Not rejecting the patient's beliefs but saying, maybe you're right, but in my experience this treatment makes people with your condition feel better, and that's why you're here, right?

Whether the pills worked purely as a placebo or whether there was a direct pharmacological effect, we'll never know. Probably it was a bit of both. It's not clear that it's important, really. The patient improved, and it's unlikely that it would have worked as well if they'd been given in a negative atmosphere of coercion or rejection - if indeed he'd agreed to take them at all.

Morgellons is a classic case of a disease that consists of an underlying experience filtered through the lens of a socially-transmitted interpretation. But every disease is that, to a degree. Even the most rigorously "medical" conditions like cancer also come with a set of expectations and a social meaning; psychiatric disorders certainly do.

I guess Morgellons is too new to be a textbook case yet - but it should be. Everyone with an interest in the mind, everyone who treats diseases, and everyone who's ever been ill - everyone really - ought to be familiar with it because while it's an extreme case, it's not unique. "All life is here" in those tangled little fibres.

Freudenreich O, Kontos N, Tranulis C, & Cather C (2010). Morgellons disease, or antipsychotic-responsive delusional parasitosis, in an hiv patient: beliefs in the age of the internet. Psychosomatics, 51 (6), 453-7 PMID: 21051675

Could social networks be more important than the media in the spread of eating disorders?

There's a story about eating disorders roughly like this: eating disorders (ED) are about wanting to be thin. The idea that thinness is desireable is something that's spread by Western media, especially visual media i.e. TV and magazines. Therefore, Western media exposure causes eating disorders.

It's a nice simple theory. And it seems to fit with the fact that eating disorders, hitherto very rare, start to appear in a certain country in conjunction with the spread of Westernized media. A number of studies have shown this. However, a new paper suggests that there may be rather more to it: Social network media exposure and adolescent eating pathology in Fiji.

Fiji is a former British colony, a tropical island nation of less than a million. Just over half the population are ethnic native Fijian people. Until recently, these Fijians were relatively untouched by Western culture, but this is starting to change.

The authors of this study surveyed 523 Fijian high school girls. Interviews took place in 2007. They asked them various questions relating to, one the one hand, eating disorder symptoms, and on the other hand, their exposure to various forms of media.

They looked at both individual exposure - hours of TV watched, electronic entertainment in the home - and "indirect" or "social network" exposure, such as TV watched by the parents, and the amount of electronic entertainment their friends owned. On top of this they measured Westernization/"globalization", such as the amount of overseas travel by the girls or their parents.

So what happened? Basically, social network media exposure, urbanization, and Westernization correlated with ED symptoms, but when you controlled for those variables, personal media exposure didn't correlate. Here's the data; the column I've highlighted is the data where each variable is controlled for the others. The correlations are pretty small (0 is none, 1.0 would be perfect) but significant.


They conclude that:

Although consistent with the prevailing sociocultural model for the relation between media exposure and disordered eating... our finding, that indirect exposure to media content may be even more influential than direct exposure in this particular social context, is novel.

The idea that eating disorders are simply a product of a culture which values thinness as attractive has always seemed a bit shaky to me because people with anorexia frequently starve themselves far past the point of being attractive even by the unrealistic standards of magazines and movies.

In fact, if eating disorders were just an attempt to "look good", they wouldn't be nearly so dangerous as they are, because no matter how thin-obsessed our culture may be, no-one thinks this is attractive, or normal, or sane. But this, or worse, is what a lot of anorexics end up as.

On the other hand, eating disorders are associated with modern Western culture. There must be a link, but maybe it's more complicated than just "thin = good" causes anorexia. What if you also need the idea of "eating disorders"?

This was the argument put forward by Ethan Watters in Crazy Like Us (my review)... in his account of the rise of anorexia in Hong Kong. Essentially, he said, anorexia was vanishingly rare in Hong Kong until after the much-publicized death of a 14 year old girl, Charlene Chi-Ying, in the street. As he put it:

In trying to explain what happened to Charlene, local reporters often simply copied out of American diagnostic manuals. The mental-health experts quoted in the Hong Kong papers and magazines confidently reported that anorexia in Hong Kong was the same disorder that appeared in the United States and Europe...

As the general public and the region's mental-health professionals came to understand the American diagnosis of anorexia, the presentation of the illness in [Hong Kong psychiatrist] Lee's patient population appeared to transform into the more virulent American standard. Lee once saw two or three anorexic patients a year; by the end of the 1990s he was seeing that many new cases each month.

Now it's important not to see this as trivializing the condition or as a way of blaming the victim; "they're just following a trend!". You only have to look at someone with anorexia to see that there is nothing trivial about it. However, that doesn't mean it's not a social phenomenon.

It's a long way from the data in this study to Watters' conclusions, but maybe not an impossible leap. Part of Westernization, after all, is exposure to Western ideas about what is healthy eating and what's an eating disorder...

Becker, A., Fay, K., Agnew-Blais, J., Khan, A., Striegel-Moore, R., & Gilman, S. (2011). Social network media exposure and adolescent eating pathology in Fiji The British Journal of Psychiatry, 198 (1), 43-50 DOI: 10.1192/bjp.bp.110.078675

I'm reading Le Rouge et le Noir ("The Red and the Black"), an 1830 French novel by Stendhal...

One passage in particular struck me. Stendhal is describing two characters who are falling in love (mostly); both are young, have lived all their lives in a backwater provincial town, and neither has been well educated.

The idea that reading novels could change the way people fall in love might strange today, but remember that in 1830 the novel as we know it was still a fairly new invention, and was seen in conservative quarters as potentially dangerous. Stendhal was of course pro-novels (he was a novelist), but he accepts that they have a profound effect on the minds of readers.

Notice that his claim is not that novels create entirely new emotions. The two characters had feelings for each other despite never having read any. Novels suggest roles to play and models to follow: in other words, they provide interpretations as to what emotions mean and expectations as to what behaviours they lead to. You feel that, therefore you'll do this.

This bears on many things that I've written about recently. Take the active placebo phenomenon. This refers to cases in which a drug creates certain feelings, and the user interprets these feelings as meaning that "the drug is working", so they expect to improve, which leads them to feel better and behave as if they are getting better.

As I said at the time, active placebos are most often discussed in terms of drug side effects creating the expectation of improvement, but the same thing also happens with real drug effects. Valium (diazepam) produces a sensation of relaxation and reduces anxiety as a direct pharmacological effect but if someone takes it expecting to feel better, this will also drive improvement via expectation: the Valium is working, I can cope with this.

The same process can be harmful, though, and this may be even more common. The cognitive-behavioural theory of recurrent panic attacks is that they're caused by vicious cycles of feelings and expectations. Suppose someone feels a bit anxious, or notices their heart is racing a little. They could interpret that in various ways. They might write it off and ignore it, but they might conclude that they're about to have a panic attack.

If so, that's understandably going to make them more anxious, because panic is horrible. Anxiety causes adrenaline released, the heart beats ever faster etc., and this causes yet more anxiety until a full-blown panic attack occurs. The more often this happens, the more they come to fear even minor symptoms of physical arousal because they expect to suffer panic. Cognitive behavioural therapy for panic generally consists of breaking the cycle by changing interpretations, and by gradual exposure to physical symptoms and "panic-inducing" situations until they no longer cause the expectation of panic.

This also harks back to Ethan Watters' book Crazy Like Us which I praised a few months back. Watters argued that much mental illness is shaped by culture in the following way: culture tells us what to expect and how people behave when they feel distressed in certain ways, and thus channels distress into recognizable "syndromes" - a part to play, a model to imitate, though probably quite unconsciously. The most common syndromes in Western culture can be found in the DSM-IV, but this doesn't mean that they exist in the rest of the world.

Like Stendhal's, this theory does not attempt to explain everything - it assumes that there are fundamental feelings of distress - and I do not think that it explains the core symptoms of severe mental illness such as bipolar disorder and schizophrenia. But people with bipolar and schizophrenia have interpretations and expectations just like everyone else, and these may be very important in determining long-term prognosis. If you expect to be ill forever and never have a normal life, you probably won't.

You've probably heard about Crazy Like Us, the new book by Urban Tribes author Ethan Watters. But you probably haven't bought it yet. You really should.

Crazy Like Us is a vivid, humane, and thought-provoking examination of "the globalization of the American psyche" - the process by which, slowly but surely, the world has adopted America's way of thinking about mental illness.

The key to the American approach is the 844-page Diagnostic and Statistical Manual of the American Psychiatric Association - the DSM, or as the saying goes, the Bible of psychiatry. The heart of the DSM is a long list of disorders, each with a code number, and each with an accompanying list of symptoms: Major Depressive Disorder (296.2), Post-Traumatic Stress Disorder (309.81), Schizophrenia (295.90), etc. The DSM is more than just a catalogue of names and numbers, however; it's part a conceptual system, a way of deciding what kind of feelings and behaviours are normal, and which are pathological; it's almost a philosophy of life.

On the most straightforward level, Crazy Like Us is the story of how, over the past 20 years, this system has gone from being American to international, displacing the ways of thinking found in other countries and cultures. In four chapters, Watters describes the rise of anorexia in Hong Kong, PTSD in Sri Lanka following the 2004 tsunami, schizophrenia in Madagascar, and major depressive disorder in Japan.

This much is plain fact. The DSM is now the internationally-recognized standard for psychiatric diagnosis; almost all academic papers in psychiatry make use of the American criteria, or the extremely similar ICD-10. What's interesting, however, is Watters' account of how the DSM spread so quickly to other countries, displacing what were - in many cases - equally rich and complex local vocabularies of distress and disorder.

In the case of Japan, Watters' answer is simple: the big drug companies, in the hopes of opening a new market for SSRI antidepressants, promoted the concept of clinical depression as a common ailment, through campaigns in the Japanese media. (Japan did have an "indigenous" concept of depression, utsubyo, but it was seen as a rare, serious disease, like schizophrenia.)

But in "developing" countries, such as Sri Lanka, the picture is rather more complex. Sri Lankans were eager to learn from the West about mental illness because of their respect for Western science and technology. Americans can put people into space - surely, they know a lot about everything, including medicine, including psychiatry.


Yet there's another level to the story of Crazy Like Us, a more interesting and more controversial one. Watters' argues that the globalization of the American way of thinking has actually changed the nature of "mental illness" around the world. As he puts it:
Essentially, mental illness - or at least, much of it - is a way of unconsciously expressing emotional or social distress and tension. Our culture, which includes of course our psychiatric textbooks, tells us various ways in which distress can manifest, provides us with explanations and narratives to make our distress understandable. And so it happens. The symptoms are not acted or "faked" - they're as real to the sufferer as they are to anyone else. But they are culturally shaped.


The historian of psychiatry, Edward Shorter, has written of how, in late 19th century Europe, people (mostly women) were said to be especially prone to suffering from "hysterical paralysis", but every time and place has its own shared "symptom repertoire". Culture does not just create symptoms out of thin air - there has to be some kind of underlying stress. As Watters puts it
Watters links anorexia in 1990s Hong Kong to the anxiety caused by the impending transfer of control from Britain to China, a geopolitical event which caused personal worry and social disruption as people or families emigrated. But it was the high-profile 1994 case of a young girl's death from self-starvation, and the subsequent media attention paid to the Western concept of Anorexia Nervosa (DSM code 307.1), that put self-starvation into the symptom repertoire for distressed young women and led to the rise in cases.

The idea that America has exported not just concepts of illness, but illnesses themselves, is a provocative one. Is it true? Commentators have pointed out that Watters' explanation of the rise of anorexia in Hong Kong is rather simplistic. There were many social and cultural changes going on during the 1990s, most of which had nothing to do with the DSM. How do we know that increasing media promotion of dieting, and the fashion for thinness, wasn't also important? In truth, we don't, but I do not think that Watters' argument requires psychiatry to be the only force at work.

Overall, Crazy Like Us is a fascinating book about transcultural psychiatry and medical anthropology. But it's more than that, and it would be a mistake - and deeply ironic - if we were to see it as a book all about foreigners, "them". It's really about us, Americans and by extension Europeans (although there are some interesting transatlantic contrasts in psychiatry, they're relatively minor.)

If our way of thinking about mental illness is as culturally bound as any other, then our own "psychiatric disorders" are no more eternal and objectively real than those Malaysian syndromes like amok, episodes of anger followed by amnesia, or koro, the fear the that ones genitals are shrinking away.

In other words, maybe patients with "anorexia", "PTSD" and perhaps "schizophrenia" don't "really" have those things at all - at least not if these are thought of as objectively-existing diseases. In which case, what do they have? Do they have anything? And what are we doing to them by diagnosing and treating them as if they did?

Watters' does not discuss such questions; I think this was the right choice, because a full exploration of these issues would fill at least one book in itself. But here are a few thoughts:

First, the most damaging thing about the globalization of Western psychiatric concepts is not so much the concepts themselves, but their tendency to displace and dissolve other ways of thinking about suffering - whether they be religious, philosophical, or just plain everyday talk about desires and feelings. The corollary of this, in terms of the individual Western consumer of the DSM, i.e. you and me, is the tendency to see everything through the lens of the DSM, without realizing that it's a lens, like a pair of glasses that you've forgotten you're even wearing. So long as you keep in mind that it's just one system amongst others, a product of a particular time and place, the DSM is still useful.

Second, if it's true that how we conceptualize illness and suffering affects how we actually feel and behave, then diagnosing or narrativizing mental illness is an act of great importance, and potentially, great harm. We currently spend billions of dollars researching major depressive disorder and schizophrenia, but very little on investigating "major depressive disorder" and "schizophrenia" as diagnoses. Maybe this is an oversight.

Finally, if much "mental illness" is an expression of fundamental distress shaped by the symptom pool of a particular culture, then we need to first map out and understand the symptom pool, and the various kinds of distress, in order to have any hope of making sense of what's going on in any individual on a psychological, social or neurobiological level. To put it another way, you need to understand people before you can understand psychiatry. After reading Crazy Like Us, I think I understand both a little bit better, and I strongly recommend it.

Links:

• Ethan Watters' Crazy Like Us blog.
  
• The Americanization of Mental Illness, Watters' much-read NYT article which is a fine summary of the book's argument, but being so short, misses much of the human detail which make Crazy Like Us so interesting, in particular when Watters is writing about the response of PTSD experts to the 2004 tsunami, and the life of a Madagascan woman with schizophrenia and her family.
  
• Exporting American Mental Illness, an excellent discussion of the article over at Neuroanthropology.
• Did Antidepressants Depress Japan? A 2004 article on the Japanese antidepressants and depression story.