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Perspective

Morgellons Disease, or Antipsychotic-Responsive


Delusional Parasitosis, in an HIV Patient:
Beliefs in The Age of the Internet

Oliver Freudenreich, M.D., Nicholas Kontos, M.D.


Constantin Tranulis, M.D., Corinne Cather, Ph.D.

“Which was worse, the real condition or the self-created delusions of parasitosis, who diagnosed himself with
one; and did it matter?” Morgellons disease, yet responded to antipsychotic medi-
— Don DeLillo: “White Noise” Viking Press © 1985 cation. The authors propose an infectious-disease, vector-
based model to explain the emergence and rapid rise of
M orgellons disease (also referred to as Morgel-
lons syndrome or Morgellons) has been publi-
cized through the Internet as an unexplained syndrome
Morgellons and suggest principles of management for
cases of antipsychotic-responsive cases of Morgellons.
presenting with cutaneous dysesthesias associated with
foreign material like fibers or parasites.1 A lay person, CASE REPORT
Mary Leitao, was instrumental in naming the disease after
her 2-year-old son developed sores and began to complain “Mr. A” was a 43-year-old man with a 20-year history of
about bugs. She established a nonprofit research organi- human immunodeficiency virus (HIV) infection. Although
zation, the Morgellons Research Foundation (MRF) and his adherence to highly-active antiretroviral treatment
lobbied for widespread recognition. Under public and po- (HAART) had been sporadic, he had no acute medical
litical pressure (e.g., letters to the Centers for Disease problems, and his CD4 count was 328. His most pressing
Control [CDC] from Senators Schumer and Clinton2) the medical complaint was worrisome fatigue. He was not
CDC has launched an epidemiologic investigation into this depressed (BDI–II [Beck Depression Inventory, 2nd Edi-
unexplained dermopathy.3 Table 1 shows how this condi- tion] score of 11); he had no formal psychiatric history, no
tion rose to relative prominence in less than a decade. family psychiatric history, and he was a successful busi-
The phenomenological overlap, however, with delu- nessman. He was referred to the psychiatry department by
his primary-care physician (PCP) because of a 2-year-long
sional parasitosis has not escaped attention.4 A brief look
complaint of pruritus accompanied by the belief of being
at a proposed case definition (Table 2) shows the phenom-
infested with parasites. Numerous visits to the infectious-
enological overlap with regard to a core feature of delu-
disease clinic and an extensive medical work-up, including
sional parasitosis (the sense of something moving in or
brain imaging and consultations with a dermatologist, had
under one’s skin), as well as a host of nonspecific symp-
not uncovered any medical disorder, to the patient’s great
toms. Is the creation of this new syndrome necessary or
frustration. Although no parasites were ever trapped, Mr.
useful?
Vila-Rodriguez and MacEwan5 have raised awareness Received January 24, 2009; revised February 26, 2009; accepted March
about the facilitative role of the Internet in the spread of 3, 2009. From Massachusetts General Hospital (OF, CC); Cambridge
bizarre beliefs and shared delusional ideation, which raises Health Alliance (NK); Louis-H. Lafontaine Hospital (CT); Harvard Med-
ical School, Boston, MA (OF, NK, CC); University of Montreal, Mon-
the question of whether the propagation of new syndromes treal, Canada (CT). Send correspondence and reprint requests to Oliver
by laypersons is unavoidable in the age of the Internet. Freudenreich, M.D., MGH Schizophrenia Program, Freedom Trail
Clinic, 25 Staniford St., 2nd Floor, Boston, MA 02114. e-mail:
Herein, the authors describe the case of a patient with ofreudenreich@partners.org
human immunodeficiency virus (HIV) disease and classic © 2010 The Academy of Psychosomatic Medicine

Psychosomatics 51:6, November-December 2010 http://psy.psychiatryonline.org 453


Morgellons Disease (Delusional Parasitosis)

the possibility (“30%”) that he was suffering from delu-


TABLE 1. History of the Term “Morgellons Disease”
sions (and not Morgellons), mostly because he trusted his
1674: English doctor, Sir Thomas Brown, uses the term, PCP, “who has taken very good care of me for many
“morgellons” to describe black hairs emerging from skin lesions
years.”
in children.
2001: Mary Leitao’s 2-year-old son develops sores and begins to The patient agreed to a risperidone trial of up to 2 mg
complain about bugs. per day. Within weeks, his preoccupation with being in-
2002: Mary Leitao names this new entity, Morgellons. fested lessened significantly. Because of subjective fa-
Mary Leitao founds Morgellons Research Foundation (MRF)
2004: MRF is officially established as non-profit organization. tigue, he was switched to aripiprazole 5 mg per day. Al-
2006: CBS airs a story about Morgellons. though not 100% convinced that he might not have
First scientific article published, with Leitao as co-author.1 Morgellons disease, he is no longer pruritic and is no
CDC Task Force meets.
MRF provides case definition.
longer damaging his skin or trying to trap insects. He
2007: CDC Morgellons website opens. remains greatly improved 1 year later.
2008: CDC launches formal epidemiologic investigation.
2009: 13,561 registered families (as reported on 2/26/09).
DISCUSSION

TABLE 2. Symptoms of Morgellons Disease (from CDC and We will limit our discussion to the specifics of our case: a
MRF websites3,24)
patient with self-diagnosed Morgellons who responded to an
Cutaneous Symptoms antipsychotic trial. We are not attempting to create a nosol-
Granules, threads, fibers, or black speck-like materials on or ogy for all cases of Morgellons, which likely comprise a
beneath the skin
Movement sensations (crawling, biting and stinging) heterogeneous group, including, but not limited to, patients
Skin lesions (e.g., rashes or sores, which may be spontaneous or with somatic delusions. Some cases are likely better concep-
self-generated) tualized as nonpsychotic somatoform patients who function
Ancillary Symptoms
Musculoskeletal effects and pain
poorly because of abnormal illness behaviors characterized
Fatigue by heavy investment in the “right” diagnosis.6
Cognitive dysfunction (mental confusion, short-term memory loss)
Emotional effects
Other (e.g., shifting visual acuity, arthralgias, dyspepsia) 1. How did Morgellons emerge in society?

“Filaments” are reported in and on skin lesions and at times ex- Diseases cannot occur outside a societal context. For
truding from intact-appearing skin. White, blue, red, and black are any symptom, a suffering person may reach out to society
common among described fiber colors. Size is near microscopic, and for help. Depending on the conceptualization of the prob-
good clinical visualization requires 10-30⫻. Patients frequently de-
scribe ultraviolet light-generated fluorescence. They also report black lem by the patient and physician, different remedies will
or white granules, similar in size and shape to sand grains, on or in be sought. In cases where orthodox explanatory models
their skin or on clothing. Most clinicians willing to invest in a simple are perceived as unhelpful or even insulting (e.g., “delu-
hand-held commercial microscope have thus far been able to consis-
tently document the filaments. (Description of filaments “cut-and-
sional disorder”), patients will turn to fringe models (e.g.,
pasted” from the MRF website.) Morgellons). To understand how a single somatic experi-
CDC: U.S. Centers for Disease Control; MRF: Morgellons Re- ence can be interpreted and acted on in different ways,
search Foundation.
cognitive models of how we form ideas, including delu-
sions, and broader models about disease labels and how
A caused skin damage by probing for them and by apply- we become patients, are perhaps best viewed as separate,
ing topical solutions such as hydrogen peroxide to “bring sequential events (Figure 1 [A]). Note, however, that the
them to the surface.” After reading about Morgellons dis- two processes do interact: after all, the emergence of
ease on the Internet, he “recalled” extruding particles from Morgellons in an individual is not possible without the
his skin, including “dirt” and “fuzz.” emergence of Morgellons as a possibility in society.
During the initial consultation visit with the psychia-
trist, Mr. A was apprehensive but cautiously optimistic 2. How does a perception become a delusion?
that a medication could help. The psychiatrist had been
forewarned by the PCP that the patient had discovered a Maher7 conceptualized delusions as an individual’s
website describing Morgellons and “latched onto” this attempt to explain perceptual abnormalities (depicted as
diagnosis. However, it was notable that the patient allowed [A] in Figure 1). The delusional explanation is then main-

454 http://psy.psychiatryonline.org Psychosomatics 51:6, November-December 2010


Freudenreich et al.

include mistrust of the medical system, positive beliefs


FIGURE 1. From Perception to Diagnosis and Treatment: The
Role of Individual Beliefs, the Power to Assign about hypervigilance to somatic sensations, and beliefs
Diagnoses, and the Internet as Vector to Spread about the intolerability of physical discomfort. Although
Ideas, Including Explanatory Disease Models psychotically exaggerated here, these schemas have nota-
A bly all been on the rise in Western society since the
Perception 1960s.11,12 Once formed, a Morgellons interpretation may
be maintained and strengthened by serving a short-term
anxiety-reduction function and by ameliorating social iso-
Symptoms lation through engagement with a community of Morgel-
lons sufferers. The widespread acceptance of Morgellons
poses a peculiar problem of definition.
All attempts at defining delusions have tried to ac-
Patient Power MD C
commodate our multicultural world by acknowledging
that beliefs are not delusional if they are shared by a
Diagnosis Diagnosis reference group. In today’s “virtual” world, delusions are
D
embodied in new forms and need new definitions to take
Internet into account contemporary realities. How many patients
Treatment Treatment with delusional disorder need to sign up at a website for
the delusion to cease to exist as such, since the belief is
B Fringe Orthodoxy
shared by so many?
How does a perception become a disease? [A]: People interpret
perception in context of cognitive schemes (the “Problem”). [B]:
People choose between competing explanatory models (possible 3. How do we become patients?
“Solutions”) and seek help accordingly. [C]: POWER determines
legitimacy of models (“orthodoxy” versus “fringe.”) Simply having medical complaints— or self-diag-
How could Morgellons emerge? [C]: Today’s patients are more noses— does not turn people into patients. People become
empowered. [D]: The Internet as “vector” to spread ideas, good and
bad. Difficult containment; the fringe ceases to be perceived as fringe.
patients when they seek care from a physician,13 and are
only afforded the privileges (and duties) of the sick when
a physician makes a diagnosis.14 For any complaint, com-
tained by the relief it provides by functioning as an orga- peting explanatory schemes of varying medical and/or lay
nizing framework. This early, sensorial model made an social legitimacy are available, but, to be granted both
important contribution because it suggested that delusional patient and sick roles, a social negotiation must occur
beliefs represent a special case of general belief-formation. between patient and physician. Ultimately, however, it is
However, although perceptual abnormalities can precede the patient who decides whether to accept or reject the
delusional belief-formation, this is not always the case. It physician’s explanation for his or her symptoms (see “B”
is currently thought that delusions may also arise from in Figure 1).
attempts to explain negative affect, or from misinterpreta- On the basis of Mr. A’s clinical picture and treatment
tions of external events due to information-processing bi- response, his presentation is well explained by the con-
ases associated with negative internal states.8 Contempo- ventional diagnosis of delusional parasitosis, rather than
rary cognitive models of delusional-formation and main- Morgellons disease. However, there are a number of rea-
tenance suggest the following key elements: 1) preexisting sons to account for the greater acceptance of a Morgellons
beliefs about the self as vulnerable and the world as threat- diagnosis than a “delusional disorder” diagnosis. Whereas
ening; 2) cognitive biases that preferentially process in- “delusional disorder” is a medical disorder conveying the
formation as threatening; 3) “safety behaviors” that block idea that the suffering is “all in your head,” the diagnosis
the processing of disconfirmatory evidence; and 4) belief of Morgellons is sustained by laypersons’ lobbying, which
that one’s own perceptions are infallible.9,10 In the current provides an explanation that is not stigmatizing to the
case, a central clinical question is the identification of individual, labels conventional dermatologic medicine as
factors that may have influenced this patient’s interpreta- having failed its sufferers (which is consistent with the
tion of a potentially benign somatic sensation (i.e., itching) patient’s experience with medicine, and, therefore, em-
as sign of parasites. Predisposing cognitive schemas could powering), and creates a community of shared experience

Psychosomatics 51:6, November-December 2010 http://psy.psychiatryonline.org 455


Morgellons Disease (Delusional Parasitosis)

through Internet blogs and chat-rooms. Whereas delu- ing in the marketplace of ideas for dominance—just as
sional disorder is pathophysiologically invisible (i.e., infectious agents compete for dominance in an organism.
“imagined”), Morgellons is purportedly visible (i.e., an Ideas need “traction” in the same way that viruses require
infectious agent), and thus claims a mainstream patho- hosts. In the case of MRF, that traction/host is provided by
physiological substrate. Clearly, not all disease labels are the modern medical “gaze,” which emphasizes the eluci-
equally desirable. People crave patienthood if it legiti- dation of obscure and complex symptoms by rational anal-
mizes their suffering, but psychiatry’s labels are frequently ysis of the visible body by means of the clinico-pathologic
stigmatizing and perceived as devaluing. Today, patients and pathophysiologic methods of 18th- and 19th-century
are more autonomous and free to pursue labels not neces- Paris and German hospitals and universities.16,17 It is thus
sarily accepted by orthodoxy. In no small measure, the not surprising that diseases without clearly established
Internet has accelerated this shift of power away from focal lesions or biomarkers challenge the modern para-
physicians as sources of expert knowledge (see “C” in digm, and, therefore, the modern physician. More impor-
Figure 1). The Internet offers lay people further traits of tantly, such “diseases” represent a threat to the legitimacy
professions, such as networking, organization, and means of many patients’ suffering, and they carry stigma.18 Even
of lobbying before public officials. with the quest for knowledge and remedies aside, the
preceding sheds light on the current preoccupation with
searching for “visible” lesions (e.g., through neuroimag-
4. What has led to Morgellons’ rapid rise?
ing) in psychiatry, as well as in any number of functional-
There are other reasons why it is difficult to imagine somatic syndromes, such as chronic fatigue syndrome and
that the rapid rise of Morgellons could have occurred fibromyalgia.19 One can thus understand the appearance of
without the Internet: The Internet provides easy spread of Morgellons as a specific cultural variety of somatic syn-
ideas, along with a lack of containment. To use the lan- drome20 engendered by a vicious cycle of somatic hyper-
guage of infections, the Internet can be regarded as a vigilance on the part of the patient and an emphasis on the
“vector” that can spread information—without regard for visible and/or measurable as the dominant source of med-
accuracy or usefulness. For example, the Internet was one ical knowledge in society.
of the ways that inaccurate information regarding a causal
link between the measles/mumps/rubella (MMR) vaccine 5. How do we treat Morgellons?
and autism was disseminated and maintained. “Vaccina-
tions” or “antidotes,” in the form of skeptical, critical Although it is perhaps counterintuitive, time-limited
websites could possibly stem the flow of inaccurate treatment with an antipsychotic medication does not re-
(“bad”) ideas (e.g., http://morgellonswatch.com/); how- quire physicians and patients to agree on etiology or di-
ever, their efficacy is sometimes compromised by their agnosis.21 By extension, open disagreement does not ob-
frequent origins within mistrusted authority structures viate a positive therapeutic alliance. Often, the alliance can
(e.g., “the medical establishment”). be formed by joining with the patient around his or her
See Table 3 for an infectious model of Internet-spread suffering as well as allowing for “doubt” on both sides. A
of bad ideas based on vector-borne diseases. In this anal- careful differential diagnosis of delusional parasitosis
ogy, bad ideas are seen as pathogens. In a similar vein, (e.g., excluding “organic” conditions like scabies or can-
Lustig and colleagues15 have suggested that Morgellons cer22) and spending time with the patient enhances the
disease be regarded as an Internet meme: an idea compet- credibility of the physician’s treatment recommendations,
which should be framed as time-limited treatment trials. It
is critical that these trials be undertaken in a collaborative
TABLE 3. The Infectious-Disease Model of the Spread of
“Bad” Ideas in the Age of the Internet
spirit, with the goal of alleviating suffering, rather than
proving who is “right,” a stance that will only increase
Pathogen Inaccurate idea psychological reactance and thereby encourage rejection
Vector Internet
Vulnerable host Person in search of an explanation of the antipsychotic. Flexibility on both sides is essential,
Environment Hostile toward mainstream medicine, which but does not require that the physician be disingenuous or
has failed patients the patient passively cooperative. Although it is critical
Vaccination/antidote Alternative (good) ideas from critical
websites
always to acknowledge the patient’s ideas, it is imperative
that an objective, rational approach to the remediation of

456 http://psy.psychiatryonline.org Psychosomatics 51:6, November-December 2010


Freudenreich et al.

suffering prevails. It is an interesting observation that ob- able disease if patients and physicians cannot agree on an
vious explanations (e.g., small, crusted blood specks on antipsychotic trial. Flexibility, and perhaps, even more,
the bedsheet from scratching or alumina from antiperspi- humbleness, includes the acknowledgment on the part of
rant) are vehemently dismissed by patients with delusional physicians of the limits of medicine to explain symptoms.
parasitosis. Similarly, patients with Morgellons favor the In some respect, a diagnosis of delusional disorder is no
obscure and mysterious over the likely (e.g., preferring more illuminating with regard to pathophysiology than
nanofibers over dirt in excoriated wounds). Physicians, Morgellons disease. Delusional disorder does, however,
however, should not feel pressured into dismissing the guide potentially successful treatment. Physicians would
obvious explanation and adopting a new syndrome like be foolish to ignore the profound impact, good and bad,
Morgellons because of suffering alone. that the Internet is having on the practice of medicine.
Hence, offer proven treatments if patients fit classic Without the Internet, it is difficult to imagine the rise, in a
psychiatric syndromes such as delusional parasitosis (i.e., matter of years, of an obscure disease that lacks the im-
an antipsychotic); find ways to bring them into congruence primatur of mainstream medicine.
with both your and their conceptualizations; and focus on
the goal of relief, independent of cause. Acknowledge the This case and its discussion were first presented as a
limits of medicine: a label of delusional disorder is no true poster at the 2008 Annual Meeting of the Academy of
explanation (Erklärung in the Jasperian sense) at either the Psychosomatic Medicine in Miami, FL.
etiological or pathophysiological level. In conclusion, pa- The authors thank Dr. Michael Bostwick for his help-
tients who fit the profile of classic psychiatric syndromes ful comments.
such as delusional parasitosis should be offered proven None of the authors has any conflict of interest rele-
treatments (i.e., antipsychotics23), regardless of their own vant to this manuscript to declare.
chosen label. Finding common ground is an overarching Disclaimer: This article was written with the help of
concern, since delusional parasitosis becomes an untreat- the Internet.

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