Morgellon's syndrome. Evidence of a microorganism causing an unexplained dermopathy
Jeffrey J. Meffert, MD
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doi:10.1016/j.jaad.2010.06.031
As somebody who has spent hours on the Internet wading through the pseudoscience and conspiracy theories of that condition known as Morgellon's disease (MD; also known as “unexplained dermopathy”), I was hoping that this book would either summarize what theories are proposed or perhaps provide a unifying concept for the divergent beliefs. Unfortunately, it does not do that, but instead proposes yet another theory about what MD is, what sort of organisms are involved, and a new slant on the conspiracy of mainstream science to suppress the “truth.” The book itself is full of black and white photographs and descriptive text of what the author believes he is seeing. It is accompanied by a DVD that features color versions of the book's photographs, freeze frame images, and snippets of the movies that were analyzed for the still pictures.
Within the text and photos, it does contain all those factors that are common to most Morgellon's theories. The first is that the author has credentials that would appear to make him a credible observer of the phenomenon. The author is a Canadian family physician with some brief radiology subspecialty training and apparently some legal training. Among the well known icons of the Morgellon's communities are infectious disease physicians, internists, nurses, nurse practitioners, pediatricians, public health physicians, and research physiologists. More than one of these has run into trouble with their licensing boards for inappropriate prescribing, and one has been disciplined for falsifying data in a human immune deficiency study. For most of the rest of these experts, their contributions to the body of scientific literature, other than an occasional poster presentation, are primarily Web-based, with live lectures given in support of “in-house” seminars sponsored by the Morgellon's Research Foundation (MRF)1 or the Charles E. Holman Foundation (also known as the New Morgellon's Order [NMO]).2
Whether written by medical personnel or not, most information on Morgellon's will make an almost talismanic use of medical terms and jargon. Such terms are not always used accurately, but their presence adds to the impression (to the lay public) that there is meaningful science behind the discussion. In his book, Dr Conroy uses the terms “skin,” “epithelium,” “dermis,” and “epidermis” interchangeably when discussing the organisms he believes penetrate, migrate through, and eventually emerge from the cutis. He also states that penetration occurs rapidly with the help of “keratinized epithelium acting as a mechanical debrider and/or through some form of chemolysis of the host's epidermis,” This remarkable talent of the organism enables it to penetrate any tissue from the sole of the foot to the cornea and allows it to migrate through the body to emerge later from the scalp. Possibly even more irritating to a dermatologist reading this text is the use of “hair,” “hair fiber,” and “hair follicle” interchangeably. The first two are forgivable, but when a caption on a photo shows “a hair follicle seen immediately before its entry into the cornea,” one wonders how familiar the author really is with the skin and its appendages. The chapter titled “The Phenomenon of the Disappearing Hair Follicles” has nothing to do with alopecia but instead deals with burrowing fibers.
Beyond what may be honest confusion about accurate and precise terminology, the author also makes use of technical-sounding neologisms. This is very common in the Morgellon's literature, and often one will find the only other public use of certain terms is in other works by the same author. In this case, Dr Conroy speaks often of the “keratin microorganism matrix” and “filamentous keratin matrix” without, at any point in the book's discussion, establishing factually that the offending agent is either made up of keratin, is a microorganism, or what he means by “matrix.” Along those lines, he repeatedly refers to the organism as a fungus without any histologic, biochemical, or culture confirmation of that proposal.
Also a constant feature in the Morgellon's conversation—if not the defining element itself—is the interpretation of normal processes, structures, and contaminants as being foreign and nefarious. MD is also known as “fiber disease” and is defined by the fibers pulled from “infected” tissue. Some of these fibers have been subjected to analysis and found to be cellulose (taken as proof that they are alive), synthetic (taken as proof that they are unnatural), fiberglass (taken as proof that fiberglass is an environmental pathogen), or unidentifiable (taken as proof that modern science hopelessly cannot identify ANY fibers). On the Internet, one may find pictures of demodex identified as “nano-claws,” lint mixed with scale crust identified as a complex organism, and fibrin pulled from an open wound called a parasite. The fact that the fibers embedded in some of these crusts contain colors that the bearer cannot remember wearing recently is offered as proof that they must somehow arise in the skin itself. Pointing out that every potassium hydroxide or scabies preparation performed by a dermatologist shows such fibers is usually interpreted as proof the organism is ubiquitous or dismissed as conspiracy propaganda. The author does not analyze any of the fibers he painstakingly has photographed but is impressed by the polarizable quality of particles stuck on hairs, the finding of pubic hairs on the soles of the feet, and a substance peeled of the soles of the feet which “within 10 minutes of being outside the body the material becomes hard and nonmalleable, like thick dried skin.” This is accompanied by magnified photos of dried skin.
Most Morgellon's discussions will delve into conspiracy theory at some point, even if only to address the conspiracy of silence that arrogant mainstream science is taking part in to suppress the data. Such conspiracies have included that it is a bioweapon gone accidentally awry, that it is a bioweapon intentionally inflicted upon the population by the Russians, the Iranians, the Central Intelligence Agency, or our own scientists at Fort Dietrich, that it is a microorganism from outer space that was most likely introduced by a meteorite, that it is a form of fiberglass or asbestos or some nematode precipitated by chemtrails (jet vapor trails), that it is a mutant nematode that came over on contaminated Chinese-made clothing (accidentally or intentionally), that it is evolved nanotechnology inadvertently released, that it is malignant nanotechnology intentionally released, or that it is an evolved form of Lyme disease. This book conjectures that this is a “fungus” or “matrix” drawn to the cocaine in the air or tissues, and that the reason there is little institutional interest is because the powers that be are not interested in helping drug addicts.
Finally, there is usually a plea for funding to investigate and nail down the specifics of this scourge. The NMO solicits funds so they can study the composition of more fibers. The MRF solicits funds for their educational and political lobbying efforts. In this case, the author could use the money to try to identify the chemical and biologic nature of the organism. Dr Conroy feels that if the attraction that the organism causing MD has for cocaine could be exploited, a new natural way to destroy coca plants could be developed. He also states that if people were aware of what they were putting themselves at risk to acquire, maybe fewer would become cocaine addicts in the first place. To that end, he sees this book as a public service.
This latter fixation on cocaine is where this book diverges from the usual Morgellon's discussion of cause and effect. Much of the text, photos, and accompanying DVD deal with the attraction of the putative organism to cocaine vapors being blown on the feet or directly to the skin of the person who has been using the drug. He does not seem to believe that the “coca mite” is an actual mite but is instead this other fungal-like organism which is both contained in more impure cocaine sources and also drawn from the environment by the user. The author's description of his scientific method is an interesting read. His primary test volunteer was “selected and supplied with 600 mg and 1000 mg of cocaine bicarbonate daily” with the primary investigations occurring between 9 PM and 3 AM every evening for 6 months. Samples were lost because the researcher's spouse deliberately threw out many samples and permanent slides. Many of the best video images were lost when the camera's storage ability was reached and he recorded over them. The author also extensively studied a pet cat that was subjected to cocaine fumes and seemed to experience many of the same problems, but he decided to restrict the book content to human study. The author claims to have recorded 1500 hours of data but only to have found the organism when he subjected this 62 days worth of footage to frame by frame analysis. Highlights of this footage are contained on the DVD accompanying the book. Not surprisingly, the author admits that there is no consent for photography, research review board clearance, or details on the purity of cocaine supplied the intrepid volunteer other than that at times it was of higher quality than others. It is not stated, but presumably there are no enduring financial records for this project.
MD is not going to go away. Firmly ensconced in the electrons of the Internet, the frustrated patient with severe atopy, chronic contact dermatitis, acne excoriée, prurigo nodularis, chronic urticaria, or delusional parasitosis will eventually come across it in their search. They will be greeted by like-minded and similarly afflicted individuals who will encourage them to ignore the closed-minded physicians who have been unable to help them. Dermatologists need better tools to diagnose and treat the misery of these patients and need the willpower to spend the time they need to convince their patients that even though they do not have all the answers, they will listen and they will try their best. One cannot treat MD in a 7.5-minute visit; these patients require time and education. The psychiatrists cannot help most of them and MD patients are particularly sensitive to being referred for psychiatric medications. The primary care physicians have an incomplete knowledge of how things work in the skin and will not have any answers dermatology lacks itself. One does not have to agree with the “fiber disease” concept in order to provide compassionate care. If the patient wants to call their prurigo nodularis or delusional parasitosis “Morgellon's disease,” that is fine as long as efforts are made to steer the patient away from wasteful and sometimes hazardous “cures.” The Centers for Disease Control and Prevention study on “unexplained dermopathy” has yet to report on its results, but when it does, clinicians should make themselves aware of how that might modify the debate.3
Do you need this volume on your shelf? No, and you probably will not need the second book that the author states is on the way. Unless you have an exceptionally large MD clinic population and an unusual interest in all things Morgellon's, your publication dollars are better spent elsewhere. All dermatologists, on the other hand, need to know something about MD and need to prepare themselves to deal with sufferers who have put “itching” and “fiber” into their Internet search engine and have finally discovered the diagnosis they have been looking for. Worthless scientifically, Dr Conroy's Morgellon's Syndrome does still provide a detailed insight into how Morgellon's “researchers” think and how they draw the conclusions they do.
http://www.sciencedirect.com/science/article/pii/S0190962210007425