“Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease”
Middelveen and Stricker (2011)
Why this New Study is So Very Important
Elizabeth Rasmussen, PhD describes that findings of the recent study about Morgellons Disease (MD) by Middelveen and Stricker (2011) are in direct opposition to the historical and traditional approach to the illness. MD has been presumed to be a psychiatric disorder called “Delusions of Parasitosis” by dermatologists. Instead, Marianne Middelveen, a veterinary microbiologist, and Dr. Ray Stricker have found evidence of a veterinary analog to MD in a disease of economic importance called bovine digital dermatitis (BDD). The bovine disease is characterized by presence of abnormal keratin fibers in the area of the hooves and causes lameness, loss of milk production and loss of weight in cattle, and has been researched since the 1970s. BDD has been found associated with spirochetes, spiral shaped bacteria organisms of a similar type to those that cause Lyme Disease and Syphilis. Although the etiology of MD is not yet known, the findings by Mideelveen and Stricker provide evidence to support a potential physiological and perhaps infectious etiology and a new direction for further research of MD. Dermatology has assumed a psychiatric etiology for the multisystemic illness without evidence to support that assumption. Dr. Rasmussen presents a critique of the traditional approach by dermatology and others throughout the past century and why the new study is so important. The emerging illness that now is reported in many countries around the world, seems to parallel the emerging bovine illness in many ways. A major contrast between the two diseases seems to be in the amount of resources applied to researching a bovine disease of economic importance, vs. a human illness that has been virtually ignored by researchers as thousands more report symptoms of MD.
New report links Morgellons Disease and a Veterinary Disease of Increasing Economic Concern: Current research and existing assumptions about an emerging illness.
By Elizabeth Rasmussen, PhD, Scientific Advisory Panel, Charles E. Holman Foundation
The first comparison in the medical literature regarding an emerging illness across species lines has been reported by Middelveen and Stricker (2011): “Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease,” published recently in Clinical, Cosmetic and Investigational Dermatology. Following is the abstract:
Bovine digital dermatitis is an emerging infectious disease that causes lameness,
decreased milk production, and weight loss in livestock. Proliferative stages of bovine digital
dermatitis demonstrate keratin filament formation in skin above the hooves in affected animals.
The multifactorial etiology of digital dermatitis is not well understood, but spirochetes and
other coinfecting microorganisms have been implicated in the pathogenesis of this veterinary
illness. Morgellons disease is an emerging human dermopathy characterized by the presence
of filamentous fibers of undetermined composition, both in lesions and subdermally. While the
etiology of Morgellons disease is unknown, there is serological and clinical evidence linking this
phenomenon to Lyme borreliosis and coinfecting tick-borne agents. Although the microscopy
of Morgellons filaments has been described in the medical literature, the structure and pathogenesis
of these fibers is poorly understood. In contrast, most microscopy of digital dermatitis
has focused on associated pathogens and histology rather than the morphology of late-stage
filamentous fibers. Clinical, laboratory, and microscopic characteristics of these two diseases
are compared. Middelveen, M., & Stricker, R. (2011). Clinical,Cosmetic and Investigational Dermatology,4,167-177
Human medicine and veterinary medicine in the U.S. are not well coordinated. Middelveen and Stricker (2011) point out the huge disparity in resources devoted to investigating emerging veterinary diseases of economic importance, with very little devoted to researching corresponding emerging human illnesses. Although many anecdotal reports by people suffering from Morgellons Disease (MD) have included mention of ill pets, and even reports of pets dying from illnesses similar to those of pet owners (www.TheCEHF.org), one would have expected comparative investigations to have been initiated much earlier, it seems that Middelveen and Stricker (2011) is the first such study. Numerous similarities between bovine digital dermatitis (BDD) and MD, including the development of unusual characteristic fibers in the bovine disease, were noted by veterinary microbiologist Middelveen. The bovine fibers were found to be similar in many respects to those found in MD, and are described as composed of keratin, the material that comprises hair and nails, as well as hooves. Additionally, the study reported that in BDD, spirochetes and other microbial pathogens have been found associated with the bovine lesions. To date, no etiological mechanism has been identified for MD, although most patients have been found to have Lyme disease, a spirochetal illness (e.g., Savely & Stricker, 2010). Since BDD causes lameness in cattle, as well as decreased milk production and loss of weight, it is considered a disease of economic importance.
BDD has been in the veterinary literature since the 1970s and has been extensively studied. MD, on the other hand, has been largely ignored on the assumption over time that patients have been suffering from “delusions of parasitosis” (DOP) based on literature from last century psychiatry about a rare psychiatric disorder that was found to affect mostly older women and ignored by dermatologists throughout the history of that medical specialty.
Most of the articles on DOP refer to the literature that developed as based on the work of Ekbom in the 1930s (Ekbom, 1938). Now informed by Middelveen and Stricker (2011), a rereading of Ekbom (1938) reveals that over half of the patients described in his study had histories of illness now accepted as spirochetal in etiology, syphilis or gastric ulcers (Ekbom, 1938). Similarly, Ekbom cited an earlier study of a similar phemonenon, in which three-fourths of the patients were found to have syphilis (Vie, 1935, cited by Ekbom, 1938). Apparently, Ekbom’s subjects, like current MD patients, found absolutely no help from the specialty of dermatology. Ekbom (1938) was convinced that his subjects were experiencing actual physiological phenomena and drew no conclusions as to the source of the skin sensations as either psychiatric or somatic in origin.
Although The CDC announced in 2007, that the illness known as MD was a matter of “public health concern” (CDC, 2007, cited by Leitao, 2007) it has yet to publish the one small study announced in January of 2008, now four years later. Exactly how does the CDC engage in its mission to protect the health of its citizens from a vicious, painful and spreading matter of “public health concern” which it seems to be ignoring? Charles E Holman Foundation (CEHF) believes that the public is entitled to an answer to this urgent question.
As for dermatology, Issues leading to misdiagnoses of patients with MD seem to be tied to aspects peculiar to dermatology, the study of skin. Dermatology was once a subspecialty under internal medicine, however, now it is largely a stand-alone specialty. Over time, dermatologists have become less and less interested in medical dermatology, to the point that the discipline has been described as possibly approaching its demise within the profession and academic setting by some leaders (e.g., Werth et al., 2001). Additionally, the investigative and laboratory side of dermatology, dermatopathology, has been described as notably deficient in the areas of epidemiology and public health, in comparison with other medical specialties (e.g. Barzilai, et al., 2008; Williams, 1997). It has even been suggested by academicians in medical dermatology that many dermatologists, trained under the predominant system of dermatological education, may not be competent to address complex medical issues in general (Werth, 2001).
Dermatologists are increasingly involved with cosmetic/surgical dermatology, which is far more lucrative than its medical counterpart, and which is often compensated directly by more affluent clientele, as opposed to medical dermatology, with its reliance on third party compensation (Werth et al, 2001). This situation, no doubt, contributes to a dearth in dermatopathology and public health dermato-epidemiology research (Williams, 1997).
Diagnosis in dermatology was described by Farmer, who noted that dermatologists “observe the patient with their eyes without any aids” (Farmer, 2004, p.173). One might wonder why that distinction is made when microscopes and other magnifiers have been available for use throughout the history of dermatology. Also, one might not quite understand what happens when a new condition emerges with which a dermatologist has had no previous experience. If dermatopathology and dermato-epidemiology are so far behind in medical research, just who is designated to investigate an emerging potentially infectious illness initially affecting the skin? Apparently, no one, at least in the U.S.
With the goal of increasing expediency, Young et al., (1998), introduced the concept of “intuitive diagnosis,” to dermatology, making it acceptable to bypass diagnostic criteria in many skin conditions. Additionally, “pattern recognition” was also added to “intuitive diagnosis” in further upping expediency in dermatological diagnostics (JAMA, 2005). On the other hand, it has been noted by some in psychiatry and cognitive science, that pattern recognition is a common major type of cognitive error that leads to misdiagnoses if the wrong pattern is selected as the model a physician (e.g., Crumlish & Kelly, 2009). How much confidence should a patient have that a dermatologist is correct in a particular diagnosis?
The result for MD patients seems to be is ever growing severity of the illness, and ever increasing multisystemic involvement over time. Some patients have even resorted to suicide, after receiving no appropriate medical help for years (e.g., Leitao, 2006). After all, where can one turn to have painful skin manifestations and lesions examined if dermatologists refuse to engage in their chosen area of medical specialization?
In the late 1980s, some dermatologists decided to add psychiatry as an adjunct or liaison specialty, in part, as Van Moffaert (1986) put it, because many dermatologists had difficulties empathizing with patients with skin problems, which they viewed as relatively unimportant, compared to issues of patients faced with more dire illnesses. Many dermatologists turned to “Psychodermatology” (PD) with a relatively brief study in psychiatry to augment dermatological practice.
One factor to emerge as a serious issue with the development of PD is that the dermatologic version of psychiatric diagnostic criteria bear almost no resemblance to criteria developed over many decades by the American Psychiatric Association (APA). The APA had carefully developed Diagnostic and Statistical Manual (DSM) criteria, emphasizing rule-outs of medical causes of symptoms before arriving at many psychiatric diagnoses (APA, DSM-IV-TR, 2000). The DSM criteria until the present, have been described as rather well based in the scientific literature of medicine overall, according to Crumlish & Kelly (2009).
“PD” has taken an opposite stance, turning to psychiatric explanations first, instead of ruling out medical cause for symptoms, reversing the long standing medical and psychiatric paradigm of the APA. This development seems akin to returning to the era of “spirits,” “demons,” and “bad air” for explanations of medical illnesses. Upon reviewing the assumptions in the PD model, one gets the impression that progress in medical science over the last century or two seems never to have happened at all.
PD certainly has been an expedient approach by dermatologists not interested in suffering patients who do not fit, “the normal structure of a dermatology clinic’s typically efficient patient visits”, (Accordino et al., 2008). The general level of science in PD seems to be typified by Freudenmann, (Freudenmann, et al., 2010), who concluded that the very act of giving something to a doctor to look at is pathognomonic of a “delusional” disorder, (AKA, “The Matchbox Sign”). Additionally, Freudenmann and Lepping (2009) changed the definition of the word “delusion” itself, to include “an overvalued idea”, and not the, “fixed false belief despite evidence to the contrary,” in common use, in a weighty review with more than 350 references. One wonders who might be affected by an overvalued idea, in that particular instance.
PD has been described as being “in between” psychiatry and medical dermatology, apparently a blend of the two fields supported by the least amount of scientific research over time. Patient autonomy has been severely compromised and seems virtually nonexistent in PD, according to patients with MD. Patient values and expectations have been generally ignored. Patients often report having been tricked or forced into taking dangerous anti-psychotic drugs after being diagnosed with a primary psychiatric condition without examination of the skin by a dermatologist.
Many patients have been accused of “doctor shopping,” considered a pathognomonic sign of “delusional” disorders, according to the PD model. Much of such activity results instead from dermatologists’ deliberate actions to rid themselves of MD patients, forcing them to seek help elsewhere (Burkhardt & Burkhardt, 2008). See Burkhardt and Burkhardt (2008) for specific recommendations to dermatologists to discourage MD patients from return visits.
Even more astonishing is that psychopathologizing of MD patients has been engaged in and encouraged by those not in the health care professions at all—including some entomologists and agricultural extension employees (e.g., Hinkle, 2000). It remains entirely mystifying upon what basis entomologists and agricultural extension workers might determine that they may offer diagnoses of psychiatric conditions or etiology, when they likely have absolutely no medical or psychiatric training, whatsoever.
Since the above named professions are not trained in pathogenic microbiology for example, it is a mystery to the CEHF that persons lacking such training can be permitted to offer diagnosis of an illness as either related to the current presence of insects, on one hand, or as of psychiatric etiology on the other hand, with no apparent consideration of other potential etiologic factors. The germ theory of disease, for example, has been an established fact for centuries now, an annoying fact that apparently escapes many in entomology and agricultural extension work who like simple either/or decision making, with no other relevant variables under consideration.
Clinicians rely on scientists to present relevant valid information, upon which to base their clinical work. If scientists fail to provide valid information, the result may be to mislead the direction of investigation of an emerging disease, with MD now reportedly impacting many thousands of Americans. Such misdirection might even be a factor in at least a few deaths in this country and elsewhere (Leitao, 2006).
The CDC has been agonizingly slow in acknowledging the scope and seriousness of vector-borne illnesses in general, and of spirochetal illnesses, more specifically (e.g., Stricker & Johnson, 2011). This situation has happened even though epidemiologists have reported that the majority of hundreds of emerging illnesses of humans are infectious, and that many stem from zoonotic and vector-borne sources, Lyme Disease, being an example (Jones et al, 2008). The CDC has been silent on MD, which has been found to be closely associated with Lyme Disease (e.g., Harvey et al., 2009; Savely & Stricker, 2009; Savely, et al., 2006; Savely & Stricker, 2007; Savely & Stricker, 2010).
Although the CDC announced a small study of MD, which it terms “Unexplained Dermopathy ” (UD) in January 2008 with the aid of the military (CDC, cited by the CEHF) results have yet to be published years later, though the CDC claims the study was submitted for publication (CDC Website on UD). Increasing thousands report suffering from MD. It is a serious illness with many clinical and laboratory abnormalities (e.g., Harvey et al., 2009). The public is entitled to know the results of the CDC’s preliminary study and whether or not potential microbial etiology was even considered in that investigation. If the CDC has failed to properly investigate an illness, and failed to protect the public from a potentially communicable microbial illness because of failure to seek appropriate information while assuming mass “delusions,” the consequences could be dire for the nation as a whole. We expect and deserve accountability from the CDC, as our lives literally depend upon it.
Middelveen and Stricker (2011) is the first comparative work to find in MD, many similar characteristics of illness in domestic animals and in humans, including presence of abnormal fibers. Apparently diseases of animals of economic importance are seen as of higher priority to research than human illnesses. Not considered are the massive toll in severe human suffering; the loss of the ability to engage in economic productivity; and the loss of the ability to enjoy even a marginally decent quality of life, as those suffering with MD have experienced. Very ill people have been assumed to be primarily psychiatrically ill by those, in our opinion, ill qualified to make such determinations and on an unsupportable bases, according to the CEHF.
It is underappreciated that mites and ticks that infest birds, for example, often carry spirochetal illnesses that can affect animals and humans (Burgess, 1988; De Luna et al., 2008; Dubska, et al., 2009; Hamer, et al., 2011; Morshed et al., 2005; Olson, et al., 2005; Reed et al., 2003). Furthermore, connections have been reported between spirochetal illnesses and the development of lymphomas, serious and sometimes fatal cancers (Bertoni, 2004; Guidoboni, et al., 2006; Kutting, et al., 1997; Monari et al., 2007; Roggero, et al., 2000; Schollkopf, et al., 2008; Tothova, et al., 2006).
Interestingly, it was patients with lymphomas, that were the comparison mentioned by Van Moffaert (1986), in explaining dermatologists’ inability to empathize with their own skin-afflicted patients. Devoid of an understanding of actual empathy, and only somewhat recently trained in a superficial approximation of supposed empathy for “rapport”-enhancement with suffering patients (e.g., Murase. et al., 2006), dermatologists press on with psychopathologizing of patients with MD. Indeed, many with MD may exhibit psychological symptoms—as a result of medical illness, not the other way around! And more so at the absolute refusal of the very specialty to which they appropriately turned, to examine their skin with appropriate methodology (e.g., Savely & Stricker, 2010).
Middelveen and Stricker (20911) have pointed the medical research on MD in a more appropriate and vitally important direction that will hopefully soon stop the internet-based mass “delusion” (e.g., Vila-Rodriquez & Macewan, 2008) and the “delusional infestation“ nonsense (e.g. Freudenmann & Lepping, 2009). Scheinfeld, a dermatologist, has even proposed brain scans, in lieu of examining the skin with magnification to assist with diagnosis of “DOP” (Scheinfeld, 2011)! Hardly a wise utilization of healthcare resources, when Savely and others (e.g., Savely & Stricker, 2010) have demonstrated repeatedly that the subcutaneous fibers in MD can be objectively observed with appropriate microscopy of the skin.
Morgellons has been found to respond to antibiotics and other antimicrobials (e.g., Savely & Stricker 2010), which are rarely offered to patients with MD, who have been presumed primarily mentally ill. Instead of examining the skin, dermatologists and PDs have erroneously maintained a belief in primary psychopathology spread by internet as being causal in this illness, and with dangerous psychiatric drugs as the solution, without ever using the optical instruments readily available to practitioners throughout the history of dermatology to investigate the readily observable physical pathology in this illness.
It is long past time for dermatology to decide whether it is or is not a medical specialty. If it is, then all medical illnesses involving the skin should be addressed, researched, and treated based on scientific findings. If it is not, then it should admit that it is not engaged in treatment of medical illnesses. The notion that dermatologists are practicing psychiatry, with diagnostic criteria misappropriated from another time about a rare psychiatric disorder and forced on medically ill people, with a unique set of diagnostic criteria not compatible with APA criteria, is completely unsupportable in the estimation of the CEHF.
With the Middelveen and Stricker (2011), the focus of investigation of MD should now shift to where it should have been all along--investigating an illness based on the science-based germ theory of disease, not with an mistaken presumption of primary psychiatric etiology. Human Illnesses involving spirochetes have been especially neglected in medical research (e.g., Stricker & Johnson, 2011). Hopefully that change will happen now, before Morgellons becomes too widespread to be addressed at all. Interestingly, Hinkle’s 2000 article included the quote, “’delusory parasitosis’ is an intriguing field for useful research, an opportunity for teamwork on the part of the pest control operator, the medical entomologist, the dermatologist, and the psychiatrist,” (Hinkle, 2000, p. 23). Significantly, Hinkle omitted the crucial “microbiologist” from the team. The Middelveen and Stricker (2011) study corrects that glaring omission.
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