Morgellons
Imagine feeling something crawling under your skin, seeing strange fibers emerge from your sores, and believing no doctor truly understands your suffering. This is the reality for individuals who self-diagnose with Morgellons, a perplexing condition that has sparked both widespread concern and significant scientific debate. What begins as a personal struggle often evolves into a complex interplay between symptoms, belief, and the powerful influence of online communities. Morgellons is a self-diagnosed skin condition where individuals believe fibers are emerging from their skin, but mainstream medical consensus classifies it as a form of delusional parasitosis. The condition gained significant public attention through patient advocacy and media coverage, leading to a multi-year investigation by the Centers for Disease Control and Prevention (CDC). Despite patient beliefs, the CDC's rigorous study found no evidence of infectious organisms or unusual environmental causes, concluding that the perceived fibers were predominantly common textile materials like cotton.
AI Summary
Imagine feeling something crawling under your skin, seeing strange fibers emerge from your sores, and believing no doctor truly understands your suffering. This is the reality for individuals who self-diagnose with Morgellons, a perplexing condition that has sparked both widespread concern and significant scientific debate. What begins as a personal struggle often evolves into a complex interplay between symptoms, belief, and the powerful influence of online communities.
- Morgellons is a self-diagnosed skin condition where individuals believe fibers are emerging from their skin, but mainstream medical consensus classifies it as a form of delusional parasitosis.
- The condition gained significant public attention through patient advocacy and media coverage, leading to a multi-year investigation by the Centers for Disease Control and Prevention (CDC).
- Despite patient beliefs, the CDC's rigorous study found no evidence of infectious organisms or unusual environmental causes, concluding that the perceived fibers were predominantly common textile materials like cotton.
The Enigma of Morgellons
Morgellons is the informal name given to a mysterious skin condition, primarily defined by individuals who experience persistent skin lesions and a profound conviction that unusual fibers or even organisms are emerging from their bodies. It's a deeply distressing experience for those affected, leading them on a relentless search for answers.
From a scientific standpoint, however, Morgellons remains largely unsubstantiated. The general medical consensus leans toward it being a form of delusional parasitosis — a psychiatric condition where a person holds a false, unshakeable belief of being infested by parasites, insects, or other living organisms, or even inanimate objects.
Often, the visible skin sores observed in Morgellons patients are found to be the result of compulsive scratching. And those perplexing fibers? When scientifically analyzed, they are consistently identified as common environmental materials, most frequently cotton or other textile fibers, inadvertently introduced to the skin.
A Mother's Quest and a Name Revived
The name 'Morgellons' was coined in 2002 by Mary Leitao, a determined mother from Pennsylvania. Dissatisfied with her son's medical diagnosis of delusional parasitosis, she began a personal quest to find an alternative explanation for his symptoms.
Leitao drew the name from a 17th-century medical essay, 'A Letter to a Friend,' written by Sir Thomas Browne. In it, Browne describes an 'endemial distemper of children in Languedoc, called the morgellons, wherein they critically break out with harsh hairs on their backs.' For Leitao, this historical echo resonated deeply with what she believed her son was experiencing.
In 2001, Leitao recounted that her then two-year-old son developed sores and complained of bugs. Using a toy microscope, she reported seeing red, blue, black, and white fibers emerging from his lesions. She sought help from numerous doctors, all of whom found no underlying disease or unusual symptoms.
Some medical professionals, including a respected Johns Hopkins pediatrician, expressed concern for Leitao herself, suggesting she might benefit from psychiatric evaluation. One specialist even raised the possibility of Munchausen's by proxy, a syndrome where a caregiver fabricates or induces illness in a child for attention.
Despite the skepticism and unsettling suggestions, Mary and her husband, an internist, remained convinced their son suffered from 'something unknown.' This unwavering belief fueled their advocacy for recognition of what they called 'Morgellons disease.'
From Personal Story to Public Movement
In 2004, Leitao formally established the Morgellons Research Foundation (MRF). Its stated purpose was to raise awareness, fund research, and provide support for individuals affected by this 'poorly understood illness.' She initially hoped to connect with scientists or physicians who understood the problem.
Instead, the MRF became a rallying point for thousands of people worldwide who reported strikingly similar symptoms: persistent sores, perceived fibers, neurological issues, fatigue, and muscle pain. The foundation claimed to have received reports from all 50 U.S. states and numerous other countries, representing over 12,000 families.
This burgeoning community, amplified by early internet forums, successfully lobbied members of the U.S. Congress and the Centers for Disease Control and Prevention (CDC) to investigate Morgellons in 2006. Media coverage, including segments on major news networks, further propelled the condition into the national spotlight, sometimes featuring celebrity sufferers like singer-songwriter Joni Mitchell.
The CDC Investigation: Seeking Scientific Answers
Responding to intense public pressure, the CDC launched a comprehensive, multi-year investigation into Morgellons in 2007. This was a substantial undertaking, involving a task force of specialists, assistance from Kaiser Permanente, and collaboration with the U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology.
The study involved thorough skin biopsies from affected individuals and meticulous characterization of any foreign materials found. Researchers aimed to determine if there were infectious organisms, environmental toxins, or any unique pathological markers associated with the condition.
In January 2012, the CDC released its findings. The results were clear: no disease organisms, parasites, or mycobacteria were detected in any of the samples collected. The perceived fibers, when analyzed, were consistently identified as cellulose, overwhelmingly consistent with cotton fibers from clothing or textiles.
The study also noted that a significant percentage of subjects showed cognitive deficits and other clinically significant symptoms, with many reporting exposure to solvents or having drugs in their system. The CDC ultimately concluded that Morgellons was 'similar to more commonly recognized conditions such as delusional infestation' — aligning with the initial medical consensus.
The Internet's Double-Edged Sword
The rise of Morgellons is inextricably linked to the internet. Online communities provided a vital space for individuals to share experiences, validate symptoms, and foster a collective belief in a shared, unrecognized illness. This virtual support network often became a primary source of information, sometimes superseding the advice of medical professionals.
Sociologists and medical experts have explored how the internet can act as an 'incubator for mass delusion,' promoting the spread of 'bizarre' disease beliefs. In online subcultures, a belief shared by others may no longer be perceived as delusional by its adherents, leading to a phenomenon known as mass psychogenic illness.
In this context, people experiencing genuine skin irritations or other psychological disorders might encounter Morgellons online and become convinced they have it. The internet facilitates this 'socially transmitted disease,' leading to an upsurge in symptoms that, in some ways, mirrors historical mass delusions.
Critics, including dermatologists, argued that websites like the Morgellons Research Foundation inadvertently misled patients, diverting valuable medical resources into fruitless investigations of common fibers and irrelevant microorganisms. They contended that the widespread reporting of these 'strange fibers' only began with the online promotion of the condition.
The online discourse around Morgellons also saw the emergence of various conspiracy theories, linking the condition to everything from biological warfare and nanotechnology to chemtrails and extraterrestrial life. This further complicated the narrative and, at times, alienated sufferers from the mainstream medical community, who were often attacked for their skepticism.
Article
Morgellons
Morgellons () is the informal name of a self-diagnosed, scientifically unsubstantiated skin condition in which individuals have sores that they believe contain fibrous material. Morgellons is not well understood, but the general medical consensus is that it is a form of delusional parasitosis, on the psychiatric spectrum. The sores are typically the result of compulsive scratching, and the fibers, when analysed, are consistently found to have originated from cotton and other textiles.
The condition was named in 2002 by Mary Leitao, 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. 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. 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 and that the fibers found were likely cotton. The researchers concluded that the condition was "similar to more commonly recognized conditions such as delusional infestation".
Medical description
Morgellons
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. 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.
Society and culture
Mary Leitao
In 2001, according to Leitao, her then-two-year-old son developed sores under his lip and began to complain of bugs. Leitao says she examined the sores with her son's toy microscope and discovered red, blue, black, and white fibers. 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 mystery cases", examined Leitao's son. 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. Leitao last consulted an unnamed Johns Hopkins infectious disease specialist who refused to see her son after reviewing his records, and suggested 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". According to Leitao, several medical professionals she sought out shared this opinion of a potential psychological disorder:
[Leitao] said she long ago grew accustomed to being doubted by doctors whenever she sought help for her son, who is now seven 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."
Leitao says that her son developed more sores, and more fibers continued to poke out of them. She and her husband, Edward Leitao, an internist, felt their son had "something unknown".
Morgellons named
Leitao 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".
Morgellons Research Foundation
Leitao started the Morgellons Research Foundation (MRF) informally in 2002 and as an official non-profit in 2004. 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". Leitao stated that she initially hoped to receive information from scientists or physicians who might understand the problem, but instead, thousands of others contacted her describing their sores and fibers, as well as neurological symptoms, fatigue, muscle and joint pain, and other symptoms. The MRF claimed to have received self-identified reports of Morgellons from all 50 U.S. states and 15 other countries, including Canada, the UK, Australia, and the Netherlands. It also claimed that it had been contacted by over 12,000 families.
In 2012, the Morgellons Research Foundation closed down and directed future inquiries to the Oklahoma State University.
Media coverage
In May 2006, a CBS news segment on Morgellons aired in Southern California. 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". In June and July 2006, there were segments on CNN, ABC's Good Morning America, and NBC's The Today Show. In August 2006, a segment of the ABC show Medical Mysteries was devoted to the subject. Morgellons was featured on ABC's Nightline on January 16, 2008, and as the cover story of the January 20, 2008, issue of The Washington Post.
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. A 2006 article in the San Francisco Chronicle reported, "There have been no clinical studies" of Morgellons disease. A New Scientist article in 2007 also covered the phenomenon, noting that people are reporting similar symptoms in Europe and Australia.
In an article published in the Los Angeles Times on April 22, 2010, singer-songwriter Joni Mitchell claimed to have the condition.
On June 13, 2011, the Australian Broadcasting Corporation's Radio National broadcast The Mystery of Morgellons with guests including Mayo Clinic Professor Mark Davis.
CDC investigation
The Morgellons Research Foundation coordinated a mailing campaign via their website, in which thousands of people sent form letters to a Centers for Disease Control and Prevention (CDC) task force, which first met in June 2006. 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.
In June 2007, the CDC started a website relating to Morgellons, CDC Study of an Unexplained Dermopathy, and by November 2007, the CDC opened an investigation into the condition. 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. The U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology assisted with pathology. In January 2012, the CDC released the results of the study.
The CDC concluded that 59% of subjects showed cognitive deficits and 63% had evidence of clinically significant symptoms. They stated that 50% of the individuals had drugs in their systems, and 78% reported exposure to solvents (potential skin irritants). The study detected no parasites or mycobacteria in the samples collected from any individuals. Most materials collected from participants' skin were composed of cellulose, likely of cotton origin.
Internet and media influence
An active online community and publications "largely from a single group of investigators" have supported the notion that Morgellons is an infectious disease, and propose an association with Lyme disease; these findings are contradicted by the much larger studies conducted by the CDC. 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. In 2006, Waddell and Burke reported the influence of the internet on people self-diagnosed with 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."
Physician Fidel Vila-Rodriguez wrote in a 2008 editorial that the Internet promotes the spreading and supporting of "bizarre" disease beliefs because in online communities, "a belief is not considered delusional if it is accepted by other members of an individual's culture or subculture". 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 phenomenon is known as mass psychogenic illness, where physical symptoms without an organic cause spread to multiple people within the same community or social group. 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". 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." 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 Internet. 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".
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. 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".