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Morgellons
Morgellons (/mɔːrˈɡɛlənz/) is the
informal name of a self-diagnosed,
Morgellons
scientifically unsubstantiated skin Pseudomedical diagnosis
condition in which individuals have Risks Nocebo
sores that they believe contain
fibrous material.[1][2] Morgellons is not well understood, but the general
medical consensus is that it is a form of delusional parasitosis. The sores
are typically the result of compulsive scratching, and the fibers, when
analysed, are consistently found to have originated from clothings and
other textiles.[2][3]

The condition was named in 2002 by Mary Leitao[4] – a mother who


rejected the medical diagnosis of her son's delusional parasitosis. She
chose the name from a letter written by a mid-17th-century
physician.[5][6] Leitao and others involved in her Morgellons Research
Foundation successfully lobbied members of the U.S. Congress and the
U.S. Centers for Disease Control and Prevention (CDC) to investigate
the condition in 2006.[7][8] CDC researchers issued the results of their
multi-year study in January 2012, indicating that no disease organisms
were present in the samples from the individuals examined, that the
fibers found were likely cotton, and concluded that the condition was
"similar to more commonly recognized conditions such as delusional
infestation".[9][10]

Contents
Medical description
Society and culture
Mary Leitao and the MRF
Media coverage
CDC investigation
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Internet and media influence


Jay Traver
See also
References
Further reading

Medical description
Morgellons is poorly understood but the general medical consensus is
that it is a form of delusional parasitosis in which individuals have some
form of skin condition with sores that they believe contain
fibers.[1][2][3][11] Its presentation is very similar to delusional parasitosis,
with the addition that people with the condition believe there are
inanimate objects in their skin lesions. An active online community
supports the notion that it is an infectious disease, disputes that it is
psychological, and proposes an association with Lyme disease.
Controversy has resulted; publications "largely from a single group of
investigators" describe findings of spirochetes, keratin and collagen in
skin samples in small numbers of patients; these findings are
contradicted by much larger studies conducted by the CDC, which found
skin samples mostly contained cellulose that came from cotton, with no
evidence of infection or other causes.[3]

Society and culture

Mary Leitao and the MRF

In 2001,[4] according to Leitao, her then two-year-old son developed


sores under his lip and began to complain of bugs.[12] Leitao says she
examined the sores with her son's toy microscope and discovered red,
blue, black, and white fibers.[4][5] She states that she took her son to see
at least eight different doctors who were unable to find any disease,
allergy, or anything unusual about her son's described symptoms. Fred
Heldrich, a Johns Hopkins pediatrician with a reputation "for solving
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mystery cases", examined Leitao's son.[4] Heldrich found nothing


abnormal about the boy's skin, and wrote to the referring physician that
"Leitao would benefit from a psychiatric evaluation and support", and
registered his worry about Leitao's "use" of her son.[4] Leitao last
consulted an unnamed Johns Hopkins infectious disease specialist who,
after reviewing her son's records refused to see him, suggesting Leitao
herself might have "Munchausen's by proxy, a psychiatric syndrome in
which a parent pretends a child is sick or makes him sick to get attention
from the medical system".[5] According to Leitao, several medical
professionals she sought out shared this opinion of a potential
psychological disorder:[13]

[Leitao] said she long ago grew accustomed to being doubted


by doctors whenever she sought help for her son, who is now
7 and still suffering from recurring lesions. "They suggested
that maybe I was neurotic," Leitao said. "They said they were
not interested in seeing him because I had Munchausen
Syndrome by Proxy".[14]

Leitao says that her son developed more sores, and more fibers
continued to poke out of them.[5][12] She and her husband, Edward
Leitao, an internist with South Allegheny Internal Medicine in
Pennsylvania, felt their son had "something unknown".[4] She chose the
name Morgellons disease (with a hard g) from a description of an illness
in the medical case-history essay, A Letter to a Friend (c. 1656, pub.
1690) by Sir Thomas Browne, where the physician describes several
medical conditions in his experience, including "that endemial
distemper of children in Languedoc, called the morgellons, wherein they
critically break out with harsh hairs on their backs".[5][6]

Leitao started the Morgellons Research Foundation (MRF) informally in


2002 and as an official non-profit in 2004.[5][15] The MRF website states
that its purpose is to raise awareness and funding for research into the
proposed condition, described by the organization as a "poorly
understood illness, which can be disfiguring and disabling".[16] Leitao
stated that she initially hoped to receive information from scientists or
physicians who might understand the problem, but instead, thousands
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of others contacted her describing their sores and fibers, as well as


neurological symptoms, fatigue, muscle and joint pain, and other
symptoms.[5] The MRF claimed to have received self-identified reports
of Morgellons from all 50 US states and 15 other countries, including
Canada, the UK, Australia, and the Netherlands, and states that it has
been contacted by over 12,000 families.[16]

In 2012 the Morgellons Research Foundation closed down and directed


future inquiries to Oklahoma State University.[17]

Media coverage

In May 2006, a CBS news segment on Morgellons aired in Southern


California.[18] The same day, the Los Angeles County Department of
Health services issued a statement saying, "No credible medical or
public health association has verified the existence or diagnosis of
'Morgellons Disease'", and "at this time there is no reason for
individuals to panic over unsubstantiated reports of this disease".[19] In
June and July 2006 there were segments on CNN,[20] ABC's Good
Morning America,[21] and NBC's The Today Show. In August 2006, a
segment of the ABC show Medical Mysteries[12] was devoted to the
subject. Morgellons was featured on ABC's Nightline on January 16,
2008,[22] and as the cover story of the January 20, 2008, issue of the
Washington Post.[7]

The first article to propose Morgellons as a new disease in a scientific


journal was a review article co-authored by members of the MRF and
published in 2006 by the American Journal of Clinical
Dermatology.[23] A 2006 article in the San Francisco Chronicle
reported, "There have been no clinical studies" of Morgellons
disease.[23] A New Scientist article in 2007 also covered the
phenomenon, noting that people are reporting similar symptoms in
Europe and Australia.[24]

In an article published in the Los Angeles Times on April 22, 2010,


singer-songwriter Joni Mitchell claimed to have the condition.[25]

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On June 13, 2011, the Australian Broadcasting Corporation's Radio


National broadcast The Mystery of Morgellons with guests including
Mayo Clinic Professor Mark Davis.[26]

CDC investigation

Following a mailing campaign coordinated by the Morgellons Research


Foundation, in which self-described sufferers clicked on the foundation
website and sent thousands of form letters to members of Congress, a
Centers for Disease Control and Prevention (CDC) task force first met in
June 2006.[7][27][28] By August 2006, the task force consisted of 12
people, including two pathologists, a toxicologist, an ethicist, a mental
health expert, and specialists in infectious, parasitic, environmental and
chronic diseases.[29]

In June 2007, the CDC opened a website relating to Morgellons, CDC


Study of an Unexplained Dermopathy, and by November 2007, the
CDC opened an investigation into the condition.[8] Kaiser Permanente, a
health-care consortium in Northern California, was chosen to assist with
the investigation, which involved skin biopsies from affected people and
characterization of foreign material such as fibers or threads obtained
from people to determine their potential source.[8][30] The U.S. Armed
Forces Institute of Pathology and the American Academy of
Dermatology assisted with pathology.[31] In January 2012, the CDC
released the results of the study.[9][10]

Their conclusions were that 59% of subjects showed cognitive deficits


and 63% had evidence of clinically significant symptoms. 50% had drugs
in their systems, and 78% reported exposure to solvents (potential skin
irritants). No parasites or mycobacteria were detected in the samples
collected from any patients. Most materials collected from participants'
skin were composed of cellulose, likely of cotton origin.[9]

Internet and media influence

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People usually self-diagnose Morgellons based on information from the


Internet and find support and confirmation in online communities of
people with similar illness beliefs.[32][33][34] In 2006, Waddell and
Burke reported the influence of the Internet on people self-diagnosed of
Morgellons: "physicians are becoming more and more challenged by the
many persons who attempt self-diagnosis on-line. In many cases, these
attempts are well-intentioned, yet wrong, and a person's belief in some
of these oftentimes unscientific sites online may preclude their trust in
the evidence-based approaches and treatment recommendations of their
physician."[35]

Vila-Rodriguez states that the Internet promotes the spreading and


supporting of "bizarre" disease beliefs, because "a belief is not
considered delusional if it is accepted by other members of an
individual's culture or subculture".[33] Robert Bartholomew, a
sociologist who has studied the Morgellons phenomenon, states that the
"World Wide Web has become the incubator for mass delusion and it
(Morgellons) seems to be a socially transmitted disease over the
Internet." According to this hypothesis, people with delusions of
parasitosis and other psychological disorders become convinced they
have "Morgellons" after reading Internet accounts of others with similar
symptoms. This is known as mass psychogenic illness, where physical
symptoms without an organic cause spread to multiple people within
the same community or social group.[36] The Dallas Observer writes
that Morgellons may be memetically spread via the Internet and mass
media, and "[i]f this is the case, then Morgellons is one in a long line of
weird diseases that have swept through populations, only to disappear
without a trace once public concern subsides".[15] The article draws
parallels to several media-spread mass delusions.

Dermatologist Caroline Koblenzer specifically faults the Morgellons


Research Foundation (MRF) website for misleading people: "Clearly, as
more and more of our patients discover this site (MRF), there will be an
ever greater waste of valuable time and resources on fruitless research
into fibers, fluffs, irrelevant bacteria, and innocuous worms and
insects."[37] A 2005 Popular Mechanics article stated that Morgellons
symptoms are well-known and characterized in the context of other
disorders, and that "widespread reports of the strange fibers date back"
only a few years to when the MRF first described them on the
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Internet.[38] The Los Angeles Times, in an article on Morgellons, notes


that "[t]he recent upsurge in symptoms can be traced directly to the
Internet, following the naming of the disease by Mary Leitao, a
Pennsylvania mother".[34]

In 2008, The Washington Post reported that Internet discussions about


Morgellons include many conspiracy theories about the cause, including
biological warfare, nanotechnology, chemtrails and extraterrestrial
life.[7] The Atlantic says it "even received pop-culture attention" when it
was featured on Criminal Minds, adding that "Morgellons patients have
further alienated themselves from the mainstream medical community"
by "linking Morgellons to another illness viewed skeptically by most
doctors, chronic Lyme disease, and by attacking those who doubt their
condition".[39]

Jay Traver

Jay Traver (1894–1974), a University of Massachusetts entomologist,


was known for "one of the most remarkable mistakes ever published in a
scientific entomological journal",[40] after publishing a 1951 account of
what she called a mite infestation[41] which was later shown to be
incorrect,[40] and that has been described by others as a classic case of
delusional parasitosis as evidenced by her own detailed
description.[42][43][44][45] Matan Shelomi argues that the historical
paper should be retracted because it has misled people about their
delusion.[44] He says the paper has done "permanent and lasting
damage" to people with delusional parasitosis, "who widely circulate
and cite articles such as Traver's and other pseudoscientific or false
reports" via the internet, making treatment and cure more difficult.[44]

See also
Culture-bound syndrome
Fringe medicine
List of topics characterized as pseudoscience
Mass psychogenic illness
Matchbox sign
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Medicalization
Münchausen syndrome
Quaternary prevention
Somatic symptom disorder

References
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w.sove.org/SOVE%20folder/journal/sovejournal74-2000/SOVE%201
993,%20VOL%2018,%20NO%201.pdf) (PDF). Bulletin of the
Society for Vector Ecology. 18 (1): 3–5. ISSN 0146-6429 (https://ww
w.worldcat.org/issn/0146-6429).

Further reading
Fair, Brian (2010). "Morgellons: Contested illness, diagnostic
compromise and medicalisation". Sociology of Health & Illness. 32
(4): 597–612. doi:10.1111/j.1467-9566.2009.01227.x (https://doi.org/
10.1111%2Fj.1467-9566.2009.01227.x). PMID 20149149 (https://pu
bmed.ncbi.nlm.nih.gov/20149149).
Shelomi M (June 2013). "Evidence of photo manipulation in a
delusional parasitosis paper" (https://www.researchgate.net/publicati
on/233825102_Evidence_of_Photo_Manipulation_in_a_Delusional_
Parasitosis_Paper). J. Parasitol. 99 (3): 583–5. doi:10.1645/12-12.1
(https://doi.org/10.1645%2F12-12.1). PMID 23198757 (https://pubm
ed.ncbi.nlm.nih.gov/23198757).

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