|Classification and external resources|
Morgellons (/mɔː(ɹ)ˈdʒɛlənz/), also called Morgellons disease or Morgellons syndrome, is the informal name of a self-diagnosed skin condition that is actually a form of delusional disorder in which individuals believe they are infested with inanimate material like sand, hairs, thread, or fibers, while in reality no such infestation is present.
People who claim the condition experience tactile hallucinations, such as crawling, biting, and stinging sensations and visual hallucinations or illusions of unusual fibers coming out of the skin. They usually report persistent skin lesions (i.e., rashes or sores) that are unknowingly self-inflicted. These symptoms have been identified as consistent with delusional infestation (DI) by a range of medical experts including dermatologists, entomologists, and psychiatrists. Some cases of self-identified Morgellons may be more accurately diagnosed as a common skin disorder. Individuals who claim this condition commonly collect specimen samples of what they believe to be the pathogens and bring them in a small container or show pictures and videos of them to doctors as "proof" of their illness.
The name was coined in 2002 by the founder of the Morgellons Research Foundation, Mary Leitao, who revived it from a letter written by a physician in the mid-1600s. Leitao and others involved in her foundation who self-identified as having Morgellons 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 there were no disease organisms present in people with Morgellons and that the fibers found were likely cotton, and concluded that the condition was "similar to more commonly recognized conditions such as delusional infestation".
- 1 Signs and symptoms
- 2 Causes
- 3 Diagnosis
- 4 Treatment
- 5 History
- 6 See also
- 7 References
- 8 Further reading
Signs and symptoms
The main symptom of Morgellons is "a fixed belief" that fibers are embedded in or extruding from the skin. People with the condition may also believe that they are infested with disease-causing agents described as things like insects, parasites, or hairs.
Most dermatologists, psychiatrists, and other medical professionals view Morgellons as equivalent to the well-established condition delusional parasitosis, also known as delusions of parasitosis or delusional infestation, which has been described in the medical literature for over 75 years. According to medical researchers Robert Accordino and colleagues (2008), Morgellons is a pattern of skin-related symptoms that are "very similar, if not identical, to those of delusions of parasitosis". This explanation is, however, "unpopular among individuals identifying themselves as having Morgellons disease".
Individuals with delusional parasitosis hold a false belief that they are infested with parasites, bugs, insects, or other pathogens. They may experience formication, a sensation resembling insects crawling on or under the skin. In attempts to locate and remove perceived pathogens, individuals may develop elaborate rituals of inspection and cleansing that often involve a form of unintentional self-mutilation caused by itching or picking at the skin to the extent that it causes lesions. They may feel compelled to continue picking at the lesions or scabs, preventing them from healing. This disorder is very difficult to treat because of the "unshakeable delusional ideation" that parasites are present, leading patients to strongly reject diagnoses and recommendations that do not involve infestation. A minority of DP cases occur in groups of two or more individuals in close proximity, e.g., within the same family or local community, which is known by the French terms folie à deux or folie à plusieurs (shared madness). Both dementia and intellectual disability have been reported in association with DP.
People with this condition often collect what they believe to be specimen samples for their doctors to test for disease or as proof of infestation. These specimens are typically brought to the office in small containers, leading some practitioners to term this behavior the "matchbox sign". However, increasing numbers of patients bring digital photos or videos as "evidence" of pathogens as well. This behavior is considered a sign that a delusional disorder is present when physicians observe that, instead of handling allegedly dangerous pathogens with disgust or anxiety, patients collect and present them like trophies.
Some symptoms of delusional parasitosis have organic causes other than those associated with neurological or psychological conditions. For example, formication can be caused by allergies, diabetic neuropathy, menopause, skin cancer, demodex mites, stimulant drug abuse, or herpes zoster. Other symptoms are also common side-effects of many prescription or recreational drugs, such as hives, unexplained tingling sensations, and itchiness. In delusional parasitosis, the sensations may or may not have an identifiable cause, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.
Internet and media influence
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 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." 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." 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".
The LA 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". 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. 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 Dallas Observer writes that Morgellons may be 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 mass media-spread mass delusions. An article in the journal Psychosomatics in 2009 similarly asserts that Morgellons is an Internet meme.
In 2008 the Washington Post Magazine 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 some people have linked Morgellons "to another illness viewed skeptically by most doctors, chronic Lyme disease".
Morgellons is not recognized as a unique disorder, and there is no list of symptoms or differential diagnosis that is generally accepted by the medical community. People usually self-diagnose based on media reports and information from the Internet.
Some cases of self-diagnosed Morgellons disease are actually other recognized skin disorders, including allergic contact dermatitis, contact dermatitis, idiopathic urticaria and infestation with the parasite scabies. There are also case reports of people submitting self-dissected superficial nerves.
Although it has been suggested by Morgellons advocacy websites that Morgellons is related to an infectious disease, such as a tick-borne disease, or from plants, these claims have not been substantiated by available evidence or corroborated by physicians independent of these advocacy websites.
Many dermatologists treat Morgellons as delusional parasitosis. After a thorough medical examination to rule out known organic causes for the symptoms, people with delusional parasitosis are typically prescribed one of several typical antipsychotic drugs. In the past, pimozide was the drug of choice; in addition to antipsychotic activity, it also has antipruritic activity, meaning it inhibits the sensation of itching. However, pimozide requires frequent electrocardiographic monitoring. Atypical antipsychotics such as olanzapine or risperidone are used as first line treatment. Antipsychotics are effective at treating delusional parasitosis at doses as low as one-fifth to one-tenth the dose typically prescribed for schizophrenia. It is common for people who believe they have Morgellons to reject a physician's diagnosis of delusional parasitosis. It has been suggested that the term Morgellons should be adopted by dermatologists to enhance their rapport with their patients, allowing them to overcome this resistance.
People who say they have Morgellons frequently reject the diagnosis of delusional parasitosis, "report that their symptoms are not taken seriously", and refuse psychotropic medicine. Individuals have claimed positive results from antibiotic treatment. Dermatologists[who?] say that these positive effects of antibiotic use for some people are likely the result of a placebo effect or anti-inflammatory actions of the drugs. They advise against prescribing antibiotics, which may reinforce the person's delusions instead of addressing what these doctors consider the core problem: delusional parasitosis. In addition, long-term antibiotic use can have serious side effects.
Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for deworming horses, and industrial insecticides.
Mary Leitao and the MRF
In 2001, according to Mary Leitao, her then two-year-old son developed sores under his lip and began to complain of "bugs". Leitao, who studied biology at the University of Massachusetts Boston and worked for five years at two Boston hospitals as a lab technician before becoming a stay-at-home mother, 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, 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. Psychology Today reports that 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". This opinion of a potential psychological disorder, according to Leitao, was shared by several medical professionals she sought out:
(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".
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 with South Allegheny Internal Medicine in Pennsylvania, felt their son had "something unknown". 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". There is no suggestion that the symptoms described by Browne are linked to the alleged modern cases.
Leitao started the Morgellons Research Foundation (MRF) informally in 2002 and as an official non-profit in 2004. The MRF states on its website 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 claims to have received self-identified reports of Morgellons from all 50 U.S. states and 15 other countries, including Canada, the U.K., Australia, and the Netherlands, and states that it has been contacted by over 12,000 families.
In 2012 the Morgellons Research Foundation closed down and directed future inquires to Oklahoma State University.
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. The disease 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 Magazine.
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. An 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.
"I have this weird, incurable disease that seems like it's from outer space, but my health's the best it's been in a while, Two nights ago, I went out for the first time since Dec. 23: I don't look so bad under incandescent light, but I look scary under daylight. Garbo and Dietrich hid away just because people became so upset watching them age, but this is worse. Fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable or mineral. Morgellons is a slow, unpredictable killer – a terrorist disease: it will blow up one of your organs, leaving you in bed for a year. But I have a tremendous will to live: I've been through another pandemic – I'm a polio survivor, so I know how conservative the medical body can be. In America, the Morgellons is always diagnosed as 'delusion of parasites', and they send you to a psychiatrist. I'm actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that's owed to them."
On February 3, 2012, the Russian Channel One's popular Let Them Talk show hosted by Andrey Malakhov, in the programme entitled "The Curse of The World's End", featured several alleged victims of the disease in the studio, some of whom provided homemade footage. According to one of the guests, Valentina Serova, in Rostov Oblast, where she came from, the spread of Morgellons has gained epidemic proportions and is totally ignored by the state. Among theories and hypotheses aired, one dealt with the possible result of bacteriological weapons testing. (The Salsk Steppes, in particular, were rumoured to have served as sites for such testing in the USSR). One of the invited experts, Irina Ermakova, head of the National Genetic Security Association of Russia, argued that Morgellons may have resulted from the production of genetically modified organisms, claiming that, of the fifteen thousand families afflicted by the disease around the world, the majority live near fields where transgenic plants are being produced.
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. In July 2006, Dan Rutz, MPH, a communications specialist for the CDC, said, "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it". By August 2006, the task force consisted of 12 people, including 2 pathologists, a toxicologist, an ethicist, a mental health expert, and specialists in infectious, parasitic, environmental and chronic diseases. In May 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz if he had any information about the nature of the fibers. Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is [an infectious process], but our mind is open to everything, including that remote possibility".
In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka 'Morgellons')". By November 2007, the CDC had announced an investigation process, stating that, "The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors". Kaiser Permanente in Northern California was chosen to assist with the investigation, which began after the scientific protocols and review board structure had been prepared and approved. Investigators planned to report on the geographic distribution of the illness and estimate rates of illness in affected communities. The investigation involved skin biopsies from affected people and characterization of foreign material such as fibers or threads obtained from people to determine their potential source. In January 2008 it was reported that the CDC was enlisting the aid of the U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology "to conduct 'immediate' and 'rigorous' research".
On November 4, 2009, the CDC issued a preliminary report based on an external peer review of the project. As of March 24, 2011, the CDC said "We recently completed the data analysis. A final report has been submitted for publication in a peer-reviewed scientific journal".
On January 25, 2012, the CDC released the results of the study, which found no infectious or environmental links. The study consisted of skin biopsies, blood tests, and interviews of over 100 people with Morgellons, and yielded no evidence of an infection (bacterial, fungal, or otherwise) or common environmental factor causing the problems. Laboratory analysis of the threads found by participants revealed nothing unusual; they consisted of cotton and other materials likely to be found in clothing. The researchers could not find any explanation for sensations participants reported under their skin and suggested these could be “delusional infestation”, wherein people falsely believe their bodies are being invaded by small organisms.
- List of questionable diseases
- Münchausen syndrome
- Quaternary prevention
- Somatoform disorder
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