Morgellons disease

Morgellons disease Pub Med    2010

Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology

Morgellons disease is a controversial illness in which patients complain of stinging, burning, and biting sensations under the skin. Unusual subcutaneous fibers are the unique objective finding. The etiology of Morgellons disease is unknown, and diagnostic criteria have yet to be established. Our goal was to identify prevalent symptoms in patients with clinically confirmed subcutaneous fibers in order to develop a case definition for Morgellons disease.

Morgellons disease is a poorly understood multisystem illness characterized by stinging, biting, and crawling sensations under the skin.1 According to the Morgellons Research Foundation (MRF) website, more than 14,000 families are reportedly affected by this emerging disease.2 Considerable suffering occurs as thread-like fibers work their way out of the victim’s skin causing pain, itching, and open, disfiguring lesions (Figures 1 and 2). Unfortunately, patients are often dismissed as delusional by clinicians who are unfamiliar with the signs and symptoms of Morgellons disease.3–5 There is a scarcity of literature on Morgellons disease due to its relatively recent description in the modern medical literature, the reluctance on the part of the medical community to recognize it as anything other than psychopathology, and the lack of knowledge about its etiology and transmission.6

Biopsies performed on Morgellons disease patients have focused on fibrous material projecting from inflamed epidermal tissue, and this material is often labeled as “textile fibers” on pathologic examination.7 However, a more thorough analysis of the fibers performed by the Federal Bureau of Investigation forensics laboratory has revealed that the fibers do not resemble textiles or any other manmade substance. In fact, the fibers are virtually indestructible by heat or chemical means, making analysis difficult by conventional methods.6

History of Morgellons disease: from delusion to definition  Pub Med 2018

There is a brief mention of “the Morgellons” by Emslie-Smith in 1946, where he proposes that the condition was a form of myiasis caused by the larva of a Hypoderma species, although his account did not provide convincing evidence to support his theory.27 In a 1983 lecture, Lyell described a survey of several hundred dermatologists treating patients with DOP who reported that many of their patients exhibited specimens in matchboxes, baggies, scraps of paper, or photographs. Lyell labeled this practice the “matchbox sign”.28 The survey was reported in a short editorial in the Lancet,10 after which the “matchbox sign” was adopted by dermatologists as being proof of delusional mental illness.29–31 Likewise, the manipulation of skin to extract specimens for relief was also considered to be proof of having a delusional disorder, and this practice was labeled “the tweezer sign”.29

After Emslie-Smith’s mention of MD in 1946, there were no significant references to MD in medical literature until 2002. In 2001, biologist Mary Leitao noted nonhealing lesions on her young son, who complained that he had “bugs” under his skin. She removed a scab, and upon magnification she did not see arthropods or parasites, but she did see embedded blue and red filaments. Leitao searched the Internet looking for similar conditions, and Browne’s description bore a resemblance to her son’s condition, so she appropriated the name.1,2 Leitao subsequently founded the not-for-profit Morgellons Research Foundation (MRF). The MRF website included a database where those with the disorder could self-report their skin and systemic symptoms.5

Leitao did not get answers fromfrom the mainstream medical establishment. She had sought help from many doctors, including Fred Heldrich, a Johns Hopkins pediatrician, who arrived at the conclusion that Leitao should not use her son to “explore the problem” and that she could benefit from a psychiatric evaluation.32 Leitao gathered a group of patient advocates, medical practitioners, physicians, and nurses into a volunteer board of directors, which included Georgia-based pediatrician Greg Smith, Texas-based nurse practitioner Virginia Savely, patient advocates Charles E Holman and Cindy Casey-Holman, and former National Aeronautics and Space Administration (NASA) physician and researcher William Harvey32 (C Casey, Charles E Holman Morgellons Disease Foundation, personal communication 2017). Leitao also sought help from Randy Wymore, a pharmacology professor at Oklahoma State University.32

In 2006, Dan Rutz, a spokesman for the US Centers for Disease Control and Prevention (CDC) contacted Leitao and said that the CDC would form a task force to investigate MD, declaring that “these people deserve more than to be blown off”.32 The CDC published their study results in 2012, declaring that MD was “similar to more commonly recognized conditions, such as delusional infestation [DI]”.33 As of 2012, Leitao had withdrawn from the public eye and closed the MRF. The website run by the MRF is no longer active, and the domain name was taken over by others, now promoting fringe etiologic theories of MD.

Controversy

Unlike Ekbom, who was concerned about the underlying cause of DP,8 many modern-day practitioners and scientists have ignored the potential underlying causes responsible for formication and beliefs of infestation. It is easier to declare mental illness the exclusive etiologic cause, thus blaming the patient, when confronted with perplexing symptoms that the practitioner cannot explain. However, it is irresponsible to label a patient delusional without an appropriate psychiatric evaluation, and if mental illness is present a physician should bear in mind that an underlying infectious process can cause a pathological response resulting in mental illness.

A PubMed search using the keyword “Morgellons” yielded 58 articles, the earliest dating from 1946. From 2006 to present, medical literature is divided into two polarized points of view. One point of view is that MD is a form of delusional mental illness, and the other is that underlying spirochetal infection causes a filamentous dermopathy that is accompanied by an array of LD-like multisystem symptoms that may or may not include neuropsychiatric symptoms. There are approximately 40 papers in the medical literature proposing that MD is purely a delusional disorder, and only a quarter of that figure proposing that MD has an infectious etiology.

Diagnosing delusional disorder

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM)-V makes no mention of a diagnosis of DOP. The closest diagnosis is Delusional disorder 297.1 (F22), somatic type, which is defined thus:

presence of one or more delusions with a duration of one month or longer

criteria for schizophrenia have never been met (note hallucinations if present are not prominent and are related to the delusional theme eg, the sensation of being infected with insects is associated with delusions of infestation)

apart from the impact of the delusion(s) or its ramifications, functioning is not markedly impaired, and behavior is not obviously bizarre or odd

if manic or major depressive episodes have occurred, these have been brief relative to the duration of the delusional periods

the disturbance is not better explained by another mental disorder, such as obsessive compulsive disorder, and is not due to the physiological effects of a substance or medication or another medical condition.34

Somatic-type delusional disorders manifest with core beliefs concerning bodily functions or sensations. Manschreck stated that the diagnosis of delusional disorder should be a diagnosis of exclusion, and he outlined three steps for evaluating patients with delusions. The first step is to establish if pathology is present. This step requires clinical judgment to distinguish among a true observation, a firm belief, an overvalued idea, and a delusion.35 He states that a comment that at first appears delusional can prove to be factual, and some reports that seem believable may later be found to be delusional. Therefore, he recommended that rather than the truth or falseness of a belief, the extremeness or inappropriateness of a patient’s behavior may be the determining factor leading to a diagnosis of delusional disorder.35,36 In other words, one must first establish that a belief is delusional, and not the result of an underlying somatic illness.