Morgellons: What Is it?

morgellons forest

morgellons forest

This is a repost of a 2006 piece I wrote here, well, just because I liked it.

This MetaFilter query (http://www.metafilter.com/mefi/51559) 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 (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16489838&dopt=Citation) 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 (http://www.morgellons.org/) 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. (http://www.metafilter.com/mefi/51559)

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 symptoms 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’, (http://scholar.google.com/scholar?hl=en&newwindow=1&q=Morgellons+Disease&spell=1) as proponents dub it, yields only these few resources, a search on ‘Morgellons’ alone (http://www.google.com/search?q=Morgellons&start=0&ie=utf-8) is more revealing. Weeding out the sensationalistic and the partisan, the best overview of the status of Morgellons is the Wikipedia article here (http://en.wikipedia.org/wiki/Morgellons). 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 (http://www.mysanantonio.com/global-includes/printstory.jsp?path=/news/metro/stories/MYSA051106.morgellans.KENS.32030524.html) 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 (http://www.popularmechanics.com/science/medicine/1662162.html?page=1&c=y) 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 (http://www.morgellons.org/congress.html) 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 (http://morgellonswatch.blogspot.com/) 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, (http://en.wikipedia.org/wiki/Neurasthenia) depression and hysteria (http://en.wikipedia.org/wiki/Hysteria).

Update:

“The Morgellons Research Foundation (MRF) is no longer an active organization and is not accepting registrations or donations. The MRF donated remaining funds to the Oklahoma State University Foundation to support their Morgellons disease research. Click here to learn more about this research.”

5 comments

  1. CareMan

    Morgellons Disease, illuminating an undefined illness

    By: William T Harvey, Robert C Bransfield, Dana E Mercer, Andrew J Wright, Rebecca M Ricchi and Mary M Leito
    Introduction

    This review of 25 consecutive patients with Morgellons disease (MD) was undertaken for two primary and extremely fundamental reasons. For semantic accuracy, there is only one “proven” MD patient: the child first given that label. The remainder of inclusive individuals adopted the label based on related descriptions from 1544 through 1884, an internet description quoted from Sir Thomas Browne (1674), or was given the label by practitioners using similar sources. Until now, there has been no formal characterization of MD from detailed examination of all body systems. Our second purpose was to differentiate MD from Delusions of Parasitosis (DP), another “informal” label that fit most of our MD patients. How we defined and how we treated these patients depended literally on factual data that would determine outcome. How they were labeled in one sense was irrelevant, except for the confusing conflict rampant in the medical community, possibly significantly skewing treatment outcomes.
    Case presentation

    Clinical information was collected from 25 of 30 consecutive self-defined patients with Morgellons disease consisting of laboratory data, medical history and physical examination findings. Abnormalities were quantified and grouped by system, then compared and summarized, but the numbers were too small for more complex mathematical analysis. The quantification of physical and laboratory abnormalities allowed at least the creation of a practical clinical boundary, separating probable Morgellons from non-Morgellons patients. All the 25 patients studied meet the most commonly used DP definitions.
    Conclusions

    These data suggest Morgellons disease can be characterized as a physical human illness with an often-related

    Actual Morgellons Lesions

    delusional component in adults. All medical histories support that behavioral aberrancies onset only after physical symptoms. The identified abnormalities include both immune deficiency and chronic inflammatory markers that correlate strongly with immune cytokine excess.

    The review of 251 current NLM DP references leads us to the possibility that Morgellons disease and DP are grossly truncated labels of the same illness but with the reversal of the cause-effect order. Further, the patients’ data suggest that both illnesses have an infectious origin.
    Laboratory Data

    CBC aberrancies were common but often intermittent. They included abnormal variable RBC indices, occasional low-grade anemia, low white cell count, and high monocyte count. Other abnormalities included low Natural Killer cell (CD56 + CD16) number and percentage, high or high-normal insulin level (in all tested) and intermittent elevation of serum calcium, globulin level, and A/G ratio. Sedimentation rate was mid-range “normal” or lower with only one ANA positive. Antidouble stranded DNA antibody level was negative in all tested.

    Real Morgellons Fibers

    Occasionally IgG subclasses 1 and 3 were low. Commonly elevated markers supporting chronic inflammation included C-reactive protein and TNF-alpha. Other occasionally abnormal laboratory parameters present in chronic inflammation or infection included IFN-gamma, Homocysteine and serum Leptin. Most patients showed serologic evidence of infection (antibodies) with one or more unexpected potentially pathogenic microorganisms despite testing for only a few species.
    Conclusion: Proposed Characterization of Morgellons Disease

    The authors conclude that Morgellons disease is a multi-systemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but “unverified”) parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon.

    The term “Morgellons disease” came into being in the 21st century in an attempt to identify an illness for which no name existed. The entry of this new label into a phenomenon of extreme controversy may at first appear to further that controversy. Typical of the evolution of medical nomenclature, however, the problem may always have been with semantics; in particular the use of assumptions unsupported from failure to investigate the total physical patient. The “index” case that failed to fit similar earlier diagnostic labels was seen as “different” principally because its observer looked beyond the presumed signs and symptoms of the truncated “look-alike” phenomenon labeled “Delusions of Parasitosis”. Trabert’s review of 1,300+ cases makes clear that only a fraction of the total signs of that presumed illness were used to create the DP diagnostic framework.

    Our attempt to gather as much physical evidence on Morgellons patients as possible was based on the extremely large number of abnormal physical signs among those we evaluated earlier. We gathered as many clinical parameters as possible (within the fiscal constraints of “today’s” medicine) in order to see whether the abnormalities among them were consistent and if so, whether their pattern was explanatory. The unfolding mechanism strongly suggests a chronic infectious process.

    The specific agent candidates will not be addressed further until evidence of their presence is available and their presence can explain the signs and symptoms we now find in all Morgellons patients. There remains considerable work to do in collecting more data from these patients to create a credible Morgellons disease Case Definition. We submit that the same holds true for Delusions of Parasitosis patients. Much of that work may be now under way by the U.S. Centers for Disease Control and Prevention (CDC) through contract with Kaiser Permanente’s Northern California Division of Research. [http://www.cdc.gov/unexplaineddermopathy/] Meanwhile, the consistent abnormal findings in the data above may be used to improve clinical diagnosis and possibly initial treatment in current patients. Perhaps of considerable importance to a journal dedicated to Case Reports is what the juxtaposition of Morgellons disease and Delusions of Parasitosis suggests. As noted by Trabert in his meta-analysis, creating a Case definition primarily from isolated cases allows uncontrolled use of assumptions that vary considerably in order to keep an unresolved conclusion constant. Where many cases are used, consistency of similar data forces a far more valid and consistent conclusion. Until the machinery of science is in full gear and provides understanding of this phenomenon, simply “paying attention”, maintaining skepticism, practicing a simple physical exam and using commercial laboratories judiciously must suffice. Once the breadth and severity of what we are encountering is understood, the resources and motivation for its solution should come. When sufficient, we anticipate the framework of several medical specialties may be modified.

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  3. FmH

    Ummm, could you have posted a link or an excerpt instead of the entire text? And what is the citation? (Where was the article published?) Thanks.

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  4. FmH

    It is probably worth noting that “Careman’s” avatar links to a site selling colloidal silver, with the claim that it has “provided relief to thousands of sufferers” of Morgellons and several other conditions.

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