They have flocked to websites to share details of their malady, which they call Morgellons disease; they have charged the medical community with ignoring their plight and have strong-armed the government into studying it.
They go from doctor to doctor, carrying specimens in Ziploc bags and on glass slides, desperate to find a physical cause.
Now a Mayo Clinic study reviewing samples provided by 108 such patients, published Monday in the Archives of Dermatology, has concluded that the perceived infestation exists only in their minds.
Although one patient who consulted dermatologists for Morgellons was found to have pubic lice, microscopic examination showed that none of the remaining 107 patients — who were seen over a seven-year period ending in 2007 — had any evidence of infestation by bugs or parasites, despite their firm conviction that they did.
Instead, the authors concluded, the rashes, eruptions and skin ulcerations patients suffered were either mundane skin conditions that gave rise to delusions of infestation, or the result of sufferers scratching or picking at their skin to make it go away.
And the fibers and filaments so often described and offered as evidence of infestation were, upon microscopic examination, skin flakes, scabs, hair, lint, textile fiber and everyday debris.
Two fruit flies, which do not colonize the human body, were found, as well as one mite and one tick.
The review of patients' records from the Mayo Clinic is the first major study to conclude that a seeming outbreak of subcutaneous creepy-crawlies is not evidence of a new pathogen abroad in the land: rather, patients suffering such symptoms more likely have a psychological disorder long described in dermatological literature as "delusional parasitosis."
"This study is important for patients," the authors wrote. "Patients frequently believe that physicians are dismissive of their concerns and are not examining their skin closely enough, and therefore patients request that more testing be performed. This showed that biopsy results do not change a physician's clinical diagnosis of delusional infestation."
Results of another, three-year study, undertaken by the Centers for Disease Control and Prevention and Kaiser Permanente of Northern California, are slated for release in the next few months. That study was launched in January 2008 after patients and a small group of medical professionals led by an organization called the Morgellons Research Foundation advocated for a full-scale government investigation of their symptoms.
The CDC and Kaiser scientists conducted skin biopsies, physical and psychiatric evaluations of sufferers and microscopic analysis of samples. The findings are now under review by independent experts.
"We recognize it has taken time, and people and their families are suffering, but at same time, it's important to release these findings appropriately and to ensure their scientific integrity," said CDC spokeswoman Lola Russell.
The Mayo Clinic findings are certain to be bitter medicine for patients who identify themselves as sufferers of Morgellons disease. The Internet is home to a growing community of patients certain that their symptoms are evidence of a new and very real disorder. Study lead author Dr. Mark D.P. Davis, a Mayo Clinic dermatologist, said he doubted the study would convince such patients that their disease originates in their brains and not under their skin.
"They feel you're still missing something even if you've gone the extra mile," Davis said.
Several board members and a spokesperson for the Morgellons Research Foundation could not be reached for comment.
Dr. Noah Craft, a dermatologist at Harbor-UCLA Medical Center, praised the Mayo work as "the best study done to date" on the bizarre constellation of symptoms called Morgellons. He commended the Mayo researchers "for putting in the effort to understand a disease that's becoming more and more important in our culture today."
At the same time, Craft cautioned that dermatologists and primary-care physicians who see patients with similar complaints should not automatically conclude, based on the study, that they are all delusional.
"Infrequently, we do find real bugs. So everybody gets their due diligence," he said. And, he added, taking a patient's complaints seriously will often help him or her take the next step in cases where a physical cause of their agony cannot be found.
"I have a growing numbers of patients who respond really well to medicines that treat the brain," he said. "I know it's frustrating, but I often encourage them to try it if we can't get to a diagnosis." - latimes
Current CDC update: Unexplained Dermopathy (also called "Morgellons")
Mayo Clinic report: Morgellons disease: Managing a mysterious skin condition
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Posted 9/11/2009 - the CDC information that was provided 2 years ago:
CDC Updates Morgellons Disease Information Page
CDC continues to receive reports of an unexplained skin condition which some refer to as “Morgellons”. Persons who suffer from this condition report a range of cutaneous or skin symptoms including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin rashes or sores. In addition to skin symptoms, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in vision.At this time, scientists and doctors do not know what causes this condition. They do not know if people who report the condition have common risk factors or if there is a common cause for the symptoms. To assist in learning more about this condition, CDC is conducting an epidemiologic investigation. To learn more about the investigation, please refer to the following link: www.cdc.gov/unexplaineddermopathy/investigation.html
Does CDC have evidence that this is a new condition?
We do not know the cause of this condition or whether this condition is new. CDC has received an increased number of reports from persons who describe similar symptoms; therefore, we are conducting an investigation to learn more about this unexplained dermopathy.
I (or my family member) am/is suffering from this skin condition, what should I do?
Persons who believe they may suffer from this condition should contact a healthcare provider for evaluation and medical care. CDC is not a medical facility and does not provide medical care or consultation to patients.
Is this condition contagious?
The factors associated with acquiring this condition are unknown. At this time, doctors and scientists do not know what causes this condition and there is not enough information to determine whether or not this condition is contagious.
How do I find a doctor?
CDC is a public health institution that is a part of the federal government. CDC does not provide healthcare or maintain a referral list of providers. CDC suggests that you contact your primary care provider. If you do not have a healthcare provider, you may be able to identify an appropriate doctor in your area by contacting your insurance company or by using online physician locators that have been established by professional medical societies such as the American Medical Association http://webapps.ama-assn.org/doctorfinder/home.jsp or the American Academy of Dermatology http://www.aad.org/public/searchderm.htm.
Is CDC aware that some web sites claim they have products that will treat/cure this condition?
Yes. We are aware of some web sites that make these claims, including some that imply CDC support of their products. CDC cannot validate the information or claims of those web sites. At this time, CDC does not endorse or recommend any specific treatment or medications for this condition. Consumers should seek input from their healthcare provider before purchasing or using any product (e.g., skin creams, pills, and other medications) or equipment that is marketed as a treatment for this condition.
I have more questions, whom can I contact?
CDC recommends that you contact a licensed healthcare provider to discuss your symptoms.
CDC maintains a telephone number with a pre-recorded voicemail and an email account to which you can send inquiries. At this time, we are not able to provide individual responses to each inquiry.
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Morgellons Disease: Alien Introduced or Natural Human Syndrome?
Morgellons Disease is a mysterious skin disorder that was first described more than 300 years ago. The disease is characterized by multi-colored fiber-like (filamentous) strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms. Some of these multi-colored fibers (filamentous) are of microscopic size, while others have the appearance of fibers and granules coming out of the skin that can be seen growing with the naked eye. The multi-colored fibers range in color: white, blue, black, red and are often regarded by the medical community as common house hold lint.
Some self-identified Morgellons sufferers and various conspiracy theorists provide their own origin hypotheses: "Perhaps it is caused by chemical spills or bio-terror or even alien abductions. On a radio program Coast to Coast a New Mexico doctor reports that a former CIA agent told him the disease was caused by the French. A botched government experiment, he says, contaminated the water.Morgellons patients are skeptical that aliens are the cause of their disease, but have not ruled out the possibility completely. Many websites host "proof" that the fibers and granules found in the lesions and rashes are actually a successful attempt at alien invasion. Subscribers to this theory theorize that the fibers are a means of communication or an attempt at global positioning for aliens.
Evidence is beginning to mount linking Morgellons to Lyme Disease which can be caught from tick bites. Ginger Savely, a medical practitioner in Austin Texas, says she's seeing more and more patients in her clinic with the symptoms. Quoted in a local newspaper she said "Talking about it just sounds crazy, but there are just a lot of things that come out of their skin."
Savely specializes in Lyme Disease and believes there may be a link. She says that about 10 percent of her patients with chronic Lyme disease have symptoms of Morgellons. He theory is that people with the tick-borne Lyme Disease have weaker immune systems, and may be more vulnerable to the Morgellons infection.
The Morgellons Research Foundation says that forty-four people with Morgellons have tested positive for Borrelia burgdorferi (Bb), the bacteria which causes Lyme Disease. They believe that an infection with Borrelia burgdorferi (Bb) may alter the individual's immune system and allow this unknown organism to become an opportunistic coinfection.
So it seems there is in fact a real bug, or even a 'willing coalition' of bugs at large in the United States attacking innocent citizens, despite official denials. It also seems that it is the US medical establishment that is 'delusional', not their unfortunate patients.