|Classification and external resources|
Morgellons (/mɔː(ɹ)ˈdʒɛlənz/), also called Morgellons disease or Morgellons syndrome, is a condition in which people have the delusional belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers, while in reality no such things are present.
People with the condition may exhibit a range of cutaneous symptoms such as crawling, biting, and stinging sensations (formication), unusual fibers in the skin, and persistent skin lesions (e.g., rashes or sores). These symptoms have been identified by a range of medical experts including dermatologists, entomologists, and psychiatrists, as consistent with delusional parasitosis (DP or DOP). Some cases of self-diagnosed Morgellons have been more accurately diagnosed as known skin disorders.
The name was coined in 2002 by Mary Leitao, who derived it from a 1656 essay by Sir Thomas Browne. Leitao's "Morgellons Research Foundation" and people associated with the organization who are self-diagnosed successfully lobbied members of the U.S. Congress and the U.S. Centers for Disease Control and Prevention (CDC) to investigate the condition. 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, the fibers found consisted mainly of cellulose, which the CDC suggested were likely cotton, and concluded that, in these respects, 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
- 9 External links
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 a new name for a well-established condition, delusional parasitosis, also known as delusions of parasitosis. Morgellons is "a pattern of dermatologic symptoms very similar, if not identical, to those of delusions of parasitosis", and "the vast majority" (elsewhere, 95%) of people with Morgellons are diagnosed with delusional parasitosis or another psychosomatic illness. This explanation is, however, "unpopular among individuals identifying themselves as having Morgellons disease".
In delusional parasitosis, people hold a delusional belief that they are infested with parasites. They may experience formication, a sensation similar to that of insects crawling on or under the skin. Individuals with the condition may develop elaborate rituals of inspection and cleansing to locate and remove "parasites" and fibers, resulting in a form of self-mutilation; they injure themselves in attempts to be rid of the "parasites" by picking at the skin, causing lesions, and then pick at the lesions, preventing them from healing. People with delusional parasitosis often present at the doctor's office with what MDs term the "matchbox sign" – a medical sign characterized by the people making collections of fibers and other foreign objects supposedly retrieved from the skin – and, because of "unshakeable delusional ideation", strongly reject diagnoses that do not involve parasites. A significant minority of DP cases occur in groups of two, three, or more individuals in close proximity, even families, known by the French terms folie à deux, folie à trois, and folie à famille. Delusional parasitosis, with symptoms that have "extraordinary similarities" to Morgellons, has been described in the medical literature for over 75 years.
Some cases of delusional parasitosis have organic causes other than those associated with neurological/psychological conditions of unknown etiology. For example, formication, the sensation that bugs are crawling on or under one's skin, can be caused by allergies, diabetic neuropathy, menopause, skin cancer, demodex mites, stimulant drug abuse or herpes zoster. Both dementia and mental retardation have been reported in association with DP. Symptoms associated with delusional parasitosis, including urticaria (hives), paresthesia (unexplained tingling sensations in the skin), and pruritus are common side-effects of many prescription drugs or drug abuse. The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.
Internet and media influence
People with Morgellons usually self-diagnose 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 peoples 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) in 2002 (informally) 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 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.
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 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 hypothesis aired, one dealt with the possible result of bacteriological weapons testing (Salsk Steppes, in particular, were rumoured to have served as sites for such testings 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 nearby 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 Web site 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 two 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. At that time 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 4 November 2009, the CDC issued a preliminary report based on an external peer review of the project. As of 24 March 2011[update] the CDC said "We recently completed the data analysis. A final report has been submitted for publication in a peer-reviewed scientific journal."
On 25 January 2012 the CDC released the results of the study finding 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, but 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. Various Morgellons groups responded to the results of the studies by saying it confirmed their expectations that the government-run study is trying to cover up larger issues.
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