What IS it?

This MetaFilter query prompted a reader (thanks, Stan) to ask my opinion about the controversial medical condition referred to as Morgellons Disease, written about on only one academic paper by Savely, Leitao and Stricker in the American Journal of Clinical Dermatology in 2006. When I read the abstract —

“Morgellons disease is a mysterious skin disorder that was first described more than 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms. In this respect, Morgellons disease resembles and may be confused with delusional parasitosis. The association with Lyme disease and the apparent response to antibacterial therapy suggest that Morgellons disease may be linked to an undefined infectious process. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease.”

— I was struck by several details. ‘First described more than 300 years ago’ but obviously not developing much of a medical following; an outlandish and medically implausible lead symptom; the assertion that it is ‘confused’ with delusional parasitosis (but is not delusional parasitosis per se), an ‘association’ with Lyme Disease, which, although a real illness, attracts a large number of wannabees hoping to explain diverse symptoms, many of them in the emotional or psychiatric spheres; and the dramatic language about ‘unlocking the mystery’ — all of these combine to spell ‘histrionic’.

The ‘disease’ has its own foundation, the Morgellons Research Foundation, which keeps a tally of the number of ‘registered households’ (3492 as I write this). Its website expands on the attributes of the condition, citing cardinal features of “disturbing crawling, stinging, and biting sensations”, non-healing skin lesions, and associated, striking fiber-like or filamentous projections as well as “seed-like granules and black speck-like material associated with their skin.” The website features a 10x magnified photo of the lip of an affected 3 year-old boy and an “object from the same lip” at 60x. The pictures make discussants of the condition on MetaFilter squirm, the only consensus emerging from the message thread there.

In noting that “the most significant element of the infection appears to be the effect on the central nervous system”, the web site notes that concentration and memory problems are nearly universal, that mood disorders are very common, and that the majority of affected children have “ADHD, ODD, mood disorders or autism”. Only one direction of causality is considered — that the supposed infection has CNS effects. But it seemed more likely to me that the causal flow is in the opposite direction — from the emotional to the (imagined) physical. So many of the attributes of this condition smack of the other controversial syndromes of which I have written which patients adopt as explanations for their distress and dysfunction, with implausible and inconsistent core sympotoms and definitions. Although many of these conditions have a medical reality at their core, diagnostic criteria are applied loosely and diffusely by wannabee sufferers and unrigorous clinicians swept up in the bandwagon effect. Interest in and information about them (much of it inaccurate and imprecise) is spread largely by the media and particularly the internet. An everchanging constellation of trendy syndromes or ‘diseases’ serve these roles. La plus ca change, la plus c’est la meme chose, as the saying goes…

Although searching academic resources such as Medline or Google Scholar for ‘Morgellons Disease’, as proponents dub it, yields only these few resources, a search on ‘Morgellons’ alone is more revealing. Weeding out the sensationalistic and the partisan, the best overview of the status of Morgellons is the Wikipedia article here. Lo and behold, modern interest in Morgellons is largely the product of one evangelist, the aforementioned journal article author Mary Leitao, who coined the term in 2002 while investigating her son’s unexplained rash. Not a medical professional herself, she has a degree in biology and has worked as a chemist and electron microscope operator. Far from having a 300-year history, it is merely named after a condition described 300 years ago to which it is analogous but certainly not identical. Thus, it is a bit disingenuous to aspire to legitimacy by the claim to a legacy.

Leitao is the founder of the aforementioned Morgellons Research Foundation. It would be tempting to suggest that she seems to have a sense of mission about this condition and that it is somewhat self-serving now that nonprofit dollars and the preservation of her foundation are at stake. Most of the other Morgellons boosters are not medical doctors either. And, uh-oh, the sensationalism is fueled by one nurse practioner who claims to have identified and treated ‘the majority’ of these patients. Sure, you might argue that that is because she is a pioneer who recognizes a condition to which others are blind in a geographic area which for some inexplicable reason has a cluster of cases, but more likely it is because she sees what she wants to see in a self-fulfilling prophecy sort of way.

The Wikipedia article notes the extent to which the condition embodies indicators of delusional parasitosis:

  • The presentation of physical evidence such as skin scrapings and debris
  • Obsessive cleaning and use of disinfectants and insecticides
  • Rejection of the possibility of psychological or other explanations
  • Emotional trauma, desperation, social isolation.
  • Having seen numerous physicians, to no avail

While some clinicians report response of symptoms in several weeks with antipsychotic medication, I wonder whether it is necessary to invoke delusionality per se as an explanation. A delusion is a psychotic symptom representing a fixed disorder of thought not amenable to reasoning, and it is premature, even if one is debunking the disorder, to say that Morgellons sufferers are frankly delusional, rather than just insistent seekers of somatic explanations for emotional distress. Antipsychotics work in nonpsychotic conditions as well; most of them by the way are anti-pruritics, i.e. they have anti-itch properties. Using them in this condition, however, may be akin to using a sledgehammer to drive in a thumbtack.

This June, 2005 article in, of all places, Popular Mechanics, takes an expanded look at the phenomenon and ultimately shares my conclusion that sufferers convinced they have something real called Morgellons are leaping to conclusions. A number of doctors have sent samples from the skin lesions of affected patients to pathology labs and state health boards, standard practice in dermatological diagnosis. Investigations of samples uniformly fail to reveal any signs of infection or infectious organisms. Nevertheless, members of the Morgellons.org online community demand that the CDC investigate the condition as an infectious disease, a plaint recently taken up by Sens. Dianne Feinstein and Dick Durbin. Believers can write to Congress from the website.

Circumspect practitioners report that the nonhealing skin lesions go away if the affected area is casted for several weeks, preventing sufferers from scratching and picking at their sores, as our mothers taught us not to do when we were children. And what of the bizarre core symptom of the spinous or filamentous extrusions from the skin lesions? One Morgellons debunker found the photomicrographs touted by proponents to be almost identical to pictures at the same magnification of kleenex fibers stained with blood. It seems likely to me that most people would dab a weeping or oozing lesion with kleenex at least intermittently. I am tempted to elaborate that the absorptive properties of the fibers of kleenex would draw blood or serous secretions up and, as they dried, the fibers would stiffen. Probably the strands and fibers sufferers report are heterogeneous; perhaps some are fungal hyphae too, others clothing fibers and other adherent fiber fragments. The vehemence and histrionics with which the debunker’s explanation is dismissed in the comments by Morgellons proponents, unwilling to entertain any suggestion contradicting their fervent convictions, is quite telling. [See the same in the comments to this post. -FmH]

Morgellons is fascinating, but although certainly new medical syndromes are being discovered and/or codified all the time, it almost certainly does not belong among my occasional ‘Annals of Emerging Disease’ features here in FmH. Rather, I firmly believe it is of interest as a snapshot of medical sociology, illness subculture and the spread of trendy pseudodiagnosis in the age of the internet. Just as most fibromyalgia is chronic fatigue with muscle aches, this is chronic fatigue with skin lesions. And, although there may be a germ of truth (pun intended) at the core of all of these disorders, most sufferers have nothing very different than, yes, conditions described hundreds of years ago — neurasthenia, depression and hysteria.