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Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms, including crawling, biting, and stinging sensations; the appearance of fibers or other materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores). In addition to skin manifestations, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. A majority of health professionals, including most dermatologists, regard Morgellons as manifestations of other known medical conditions, including delusional parasitosis. The Morgellons Research Foundation, a non-profit advocacy organization, believes that it is a new infectious disease that will be confirmed by future research. "Other health professionals don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition." Research into the condition is ongoing.
History
In 2002, biologist Mary Leitao's 2-year-old son developed sores under his lip and began to complain of "bugs." Leitao examined the sores and discovered "bundles of fibers" of various colors. She took her son to see at least eight different doctors, who were unable to find any disease, allergy, or other explanation for the symptoms. She named the condition Morgellons (with a hard g), after a condition from the monograph A Letter to a Friend by Sir Thomas Browne, in 1690, wherein he 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. In 2004, Leitao created the Morgellons Research Foundation and its associated web site to promote awareness of the disease and advocate for increased attention from the medical community.
The MRF began actively trying to raise public awareness of Morgellons. In May 2006, Morgellons was featured in a number of TV news segments on local Southern California stations. One report, titled, "Mysterious Disease Plagues More Southlanders" prompted the Los Angeles County Department of Health services to issue a statement stating that, "No credible medical or public health association has verified the existence or diagnosis of "Morgellons Disease."
This attention was followed in June and July by segments on CNN, ABC's Good Morning America, and NBC's The Today Show. In August 2006 a large segment of the ABC show Medical Mysteries was devoted to the subject of Morgellons. This resulted in a significant rise in the public awareness of the term Morgellons. The first scientific article to discuss Morgellons, by R. B. Stricker, a member of the MRF's Medical Advisory Board, was published in July, 2006..
The MRF has since received reports of Morgellons from all 50 US states and 15 nations, including Canada, the UK, Australia, and the Netherlands, and states that their database currently includes over 10,000 registered families
CDC investigation
A Centers for Diease Control task force first met in June 2006 in order to develop a case definition of Morgellons. As of August, 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 July of 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 because they're frustrated that there's been no organized way to deal with their suffering." In May, 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz "Do you have any idea what the fibers are?" Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is , but our mind is open to everything, including that remote possibility."
In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka "Morgellons")", stating, "CDC is working with public health and other medical professionals to identify potential sites for the epidemiologic investigation. CDC also is working with task force members to develop a scientific protocol, including an initial screening case definition for the epidemiologic investigation."
On August 1, 2007, the CDC issued a formal Request for Quotations for an epidemiologic investigation of Morgellons. The CDC plans to identify a database of potential cases (study cohort) by November 30, 2007.
Symptoms and diagnosis
The most recent draft of the MRF's Morgellons "Case Definition" was developed by their Medical Advisory Board. The definition is intended to be refined as new information is available. The definition lists seven primary symptoms, five secondary symptoms, and laboratory abnormalities.
Primary symptoms listed by the MRF draft include:
- Spontaneously appearing skin lesions, are “hive-like”, or “pimple-like”, and self-generated lesions appear as linear or “picking” excoriations, often associated with pain or intense itching. The lesions that are not self-generated, such as on unreachable regions of babies’ skin, often progress to wounds that heal incompletely, or seal with a thick gelatinous layer. Visual evidence of lesions persist for years to life.
- Movement sensations are described by patients beneath and on the skin surface of any skin region as often intermittent, moving, stinging, or biting.
- Near microscopic “filaments” are reported in and on skin lesions and extruding from intact-appearing skin. Good visualization of these white, blue, red, and black colored fibers requires 10-30 X magnification.
- Musculoskeletal effects manifest as joint, muscle, tendon and connective tissue pain. Vascular, “pressure” headaches and vertebral pain with premature signs of degeneration of both discs and vertebrae are particularly common.
- Aerobic limitation is universal, and most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome.
- Cognitive dysfunction, including frontal lobe processing deficit interfering with logical thinking, short-term memory, and attention, measurable by Standard Psychometric Testing.
- Emotional effects, including loss or limitation of boundary control and intermittent obsessional states. Variation is seen in these effects from absent to seriously life altering.
Commonly reported secondary symptoms include:
- Shifting visual acuity,
- Neurological symptoms including abnormal Romberg, peripheral neuropathy, abnormal reflexes, neuropathic pain, motor control function abnormalities, circadian rhythm, body temperature, and respiratory drive.
- Gastrointestinal symptoms: dyspepsia, gastroesophageal reflux, swallowing difficulty, and bowel changes similar to IBS or Crohn’s disease.
- Acute changes in skin texture with irregular texture and hyperpigmentation pattern. The skin is variously thickened and thinned with nevi, skin tags, microangioma, lipomas, and callus formation.
- Frequently reported is joint arthralgias, but arthritis is not.
The case definition also lists specific laboratory abnormalities which fall under the general classifications of elevated cytokines, elevated inflammation markers, immunodeficiency markers, hematological abnormalities, and biochemical abnormalities.
The Morgellons case definition above includes many symptoms. Based upon their symptoms, patients may be diagnosed as having one or more of the following conditions instead of, or in addition to, Morgellons:
- Attention-Deficit/Hyperactivity Disorder (ADHD) - A developmental disorder, largely neurological
- Amyotrophic lateral sclerosis - Lou Gehrig's disease
- Atopic Dermatitis or Eczema - A common skin condition with various causes
- Autism - A brain development disorder
- Bipolar disorder - Episodes of debilitating depression to unbridled mania
- Chronic Fatigue Syndrome - A highly debilitating disorder of uncertain etiology
- Contact dermatitis - An allergic rash
- Delusional parasitosis - A delusional belief of infestion with parasites
- Drug side effects - From use, overuse, or withdrawal
- Lyme disease - An infectious disease caused by bacteria
- Neurodermatitis - Eczema or other skin condition exacerbated by scratching
- Parkinson's - A movement disorder, chronic and progressive
- Scabies - An infestation of the mite Sarcoptes scabei
Delusional parasitosis
Delusional parasitosis is one of the most common diagnoses used for Morgellons patients, and it is the primary source of controversy.
The belief that fibers are emerging from their skin is generally regarded by doctors as either delusional or a result of simply mistaking fibers from clothing (lint) as fibers emerging from the body. One prominent dermatologist, declining to be named out of concern for his safety, in a news article, indicated he treats some patients by placing a cast over the skin "lesions to prevent further irritation," which results in healing in a matter of weeks.
The website of the Bohart Museum of Entomology, of the University of California, Davis, says:
"If symptoms of itching and crawling sensations in the skin persist and no evidence of parasites can be found, then a syndrome called Delusional Parasitosis must be considered. A variety of causes have been suggested for these sensations, including parasitism by Collembola and Strepsiptera or the presence of organisms called Morgellons. "Morgellons" is a term used to describe what are purported to be fiber-like parasites of the skin, but after decades of detailed study there is no evidence of an unknown organism fitting this description. There is also no evidence that Collembola or Strepsiptera are biologically capable of parasitizing humans. However, there are quite a number of physiological, hormonal and neurological syndromes that will cause these symptoms."
Richard Fagerlund, an entomologist who has a column titled "Ask the Bugman" in the San Francisco Chronicle, stated that he takes this issue seriously. He receives letters from people with Morgellons symptoms daily. He believes that the condition is reaching epidemic proportions, and believes that a only small percentage of these cases are delusional parasitosis, while the rest may be the result of something else, such as pollutants.
In February 2005, a report on a Fox affiliate in Duval County, Florida, prompted the Duval County Health Department (DCHD) to investigate. Their report concluded: "An in-depth literature search was initiated and a bibliography is attached for reference; it was determined after extensive reviewing of these articles that Morgellons Disease is synonymous with delusional parasitosis (CDC, 1999). DCHD Epidemiology consulted a pediatric dermatologist within the health department for his professional opinion. It was concluded that this is a psychological condition that has been mentioned in literature for hundreds of years. Additionally, further investigation would be very costly to perform skin scrapings and laboratory testing." The DCHD report noted there was a significant spike in reported cases after the news report, and said, "Calls began in February 2005 and DCHD continues to receive sporadic calls. Although there appears to be a cluster of reports around March 3,2005, this is attributed to the airing of Fox News' coverage of the illness and is not a true cluster of disease."
In contrast, the California Department of Health and Human Services (CDHS) did not reach this same conclusion. In a letter to the MRF dated June 11, 2003, the CDHS stated that, "After reviewing your website to gain some information about the patients...the patients appear to have a constellation of symptoms that do not fit any currently definable disease, infectious or otherwise." In May 2006, the CDHS formally invited the CDC into the state to help investigate reports of Morgellons in California.
The 2007 Atlas of Human Parasitology states:
Within the past few years, individuals who often exhibit manifestations of what many consider to be delusional parasitosis have referred to their condition as Morgellons disease. ... Many dermatologists refute the suggestion that this is an actual disease but instead indicate that many of these patients have psychological problems or other common skin disorders. Given the large numbers of individuals who feel that they have this affliction, it will be most helpful over the coming years to have a valid scientific assessment of Morgellons diesease and its possible etiology (or etiologies). One of the chief criticisms by many patients has been that they feel the medical community and other scientists consulted have not been open to the idea that there is possibly an as yet undescribed infectious or physiologic causation for the disease. However it is certainly true that in fact many expert parasitologists, medical entomologists and other microbiologists have in fact carefully examined fibers and other materials expressed or extracted from such patients and found that biological organisms are not present. Although an apparent association of the condition with the presence of Lyme disease has been reported (Savely et al, 2006, Am J Clin Dermatol, 7:1-6), further research will be needed to help resolve the validity of Morgellons disease. Until then, whether Morgellons disease is another name for delusional parasitosis or a real disease entity with a biologic or physiologic basis will remain up in the air.
An August, 2007 article in the American Journal of Psychiatry states:
A controversial phenomenon possibly related to delusions of parasitosis inspiring discussion and media attention is Morgellons’s disease. As in delusions of parasitosis, patients describe insects/parasites crawling on or under the skin, are convinced they are infested and contagious, and produce physical "evidence" of infestation. In particular, though, patients complain of fibers extruding from the skin; such particles produced for examination have been variously identified as cellulose, fibers with "autofluorescence," fuzz balls, specks, granules, Strongyloides stercoralis, Cryptococcus neoformans, "alternative cellular energy pigments," and various bacteria. In no case, however, has an infectious etiology for these mysterious symptoms been confirmed. Morgellons’s disease is largely regarded in the dermatology literature as a manifestation of delusions of parasitosis (and potentially a means of promoting patient rapport through destigmatization), despite the efforts of the Morgellons Research Foundation to promulgate an infectious rather than a neuropsychiatric etiology. Until a treatable infectious component is identified, patients can continue to be treated with neuroleptics—pimozide, risperidone, aripiprazole—which have been reportedly effective.
Theories and research
The etiology of Morgellons is unknown, and there are differing theories regarding the nature of Morgellons. The link between Morgellons and delusional parasitosis is denied in an opinion article authored by members of the MRF and published in the peer reviewed American Journal of Clinical Dermatology. The article claims, "Morgellons disease may be linked to an undefined infectious process", and states that antibiotics are effective treatments. "Many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease." and, "When these patients are treated with antibacterials for their Lyme disease, remission of Morgellons symptoms is seen in most (Patients)." One of the co-authors (Raphael Stricker) of this article is also the President of the International Lyme and Associated Diseases Society (ILADS).
Randy Wymore, a former research director of the MRF and presently Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease, claims that Morgellons patients have masses of dark fibers visible at 60x magnification under the unbroken skin, while unaffected individuals do not. "That took away any possibility that this was not a real thing," Wymore says. In the summer of 2005, Dr. Wymore collected fibers from clothing, carpet, and sporting goods in 4 states and never found fibers resembling those sent from Morgellons patients, yet fibers from patients in California, Texas, Washington, and North Carolina all "look(ed) very similar to one another." Dr. Wymore had two faculty physicians remove fibers from beneath the skin of Morgellons patients in February 2006, and sent the samples to the Tulsa Police Department’s forensic laboratory. The police checked the samples against carpet and clothing fibers and other materials, and conducted chemical analyses and other tests, and found no matches in their 800 fiber databases. Next, they subjected the fibers to a process where they are encased in a vacuum chamber and exposed to increasing temperature. The various boiling points of the compounds cause a separation of the material, and the components of the material can be identified (gas chromatography). The forensic experts had a database of 90,000 organic compounds' boiling points. The machine reached its highest temperature, 1,400 degrees, and there was some slight blackening of the fibers but nothing happened. The fiber experts were mystified and the conclusion was they are unknown fibers, not contaminants from clothing, says Wymore. "Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI's national database. "No, no match at all. So this is some strange stuff," Pogue says. He thinks the skeptics are wrong. "This isn't lint. This is not a commercial fiber. It's not." The lab's director, Mark Boese, says the fibers are "consistent with something that the body may be producing." He adds, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."
Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital and part of the MRF research team at OSU, reports that she has examined many patients skin via a dermatoscope and performed biopsies on both lesions and apparently healthy skin; "she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin." According to Dr Casey: "There was not one patient I saw who did not look ill," she says. What's more, they all looked ill in the same way, with neurological symptoms, including confusion, foot drop, in which a person loses control of their foot and has trouble walking, and a sagging mouth when they spoke. Many had been diagnosed with atypical forms of neurological diseases like Parkinson's or amyotrophic lateral sclerosis (Lou Gehrig's disease)."
Jenny Haverty, Clinical Microbiologist Scientist, at Marin General Hospital in Greenbrae, CA, conducted microscopic observations of fiber specimens taken from four Morgellons patients living in the San Francisco Bay Area, CA in Dec, 2004. The "Morgellons Fiber Study Summary" hypothesized, "The fibers collected from these four individuals from different counties of the San Francisco Bay Area are so similar to each other that the causative agent may be epidemiologically the same."
There was preliminary information that the fibers are made of cellulose, but this information had neither been formally studied, nor confirmed.
Dr. Citovsky, MRF board member from SUNY - Stonybrook stated in January, 2007: "Morgellons skin fibers appear to contain cellulose. This observation indicates possible involvement of pathogenic Agrobacterium, which is known to produce cellulose fibers at infection sites within host tissues." His preliminary research consisted of testing five skin samples of Morgellons patients, and he found Agrobacterium in each. "PCR screening indicated the presence of Agrobacterium genes derived both from the chromosome and from the Ti plasmid, including the T-DNA, in tissues from both Morgellons patients. Conclusions: Our preliminary results indicate that Agrobacterium may be involved in the etiology and/or progression of Morgellons disease." Agrobacterium has also been found in other immunocompromised individuals.
Another MRF board member, Dr. Ahmed Kilani, the CEO of Clongen Labs and a microbiologist with a Ph.D. from Stanford University Medical School, does not agree that Morgellons is a bacterial infection. Based on the preliminary research that he has conducted so far, Kilani has hypothesized the following about the etiology of Morgellons: "Based on the structures that we observed microscopically from a number of Morgellons patients and the clinical profiles, we have reasons to believe that this organism is not a virus or bacteria. We hypothesize that this organism is a more complex fungus, algae or a novel parasite. The fibers are most likely feeding structures as they have strong resemblance to aerial hyphae observed in many fungal species."
Dr. Noah Craft, a dermatologist at the Harbor-UCLA Medical Center, Torrance, CA, has seen a handful of Morgellons patients, and talked with a number on the phone starting about 3 years ago. He is one of the dermatologists approached by the CDC to take part in their investigation. Dr. Craft says that he, unlike many doctors, always examines these patients. He biopsied Morgellons patients' skin, but found only normal skin and inflammation, as one would find in a bump that has been picked at. He's seen nothing to suggest that it's a real condition — especially not fibers in the patients' skin.
In addition to the research at Oklahoma State University and the State University of NY, research is taking place at California State - Hayward. The MRF has provided start up funding to these three universities. {{citation}}
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See also
References
- Unexplained Dermopathy at the CDC
- ^ Mysterious 'Morgellons disease' prompts US investigation, Emma Marris, Nature Medicine, 30 August 2006
- ^ Dunn, Jeffrey (August, 2007). "Diffuse Pruritic Lesions in a 37-Year-Old Man After Sleeping in an Abandoned Building". The American Journal of Psychiatry. 164: 1166–1172. doi:10.1176/appi.ajp.2007.07030381. Retrieved 2007-08-04.
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- ^ "Morgellons disease: Managing a mysterious skin condition". Mayo Clinic. 2007-05-02. Retrieved 2007-08-04.
- ^ DeVita-Raeburn, Elizabeth (March/April 2007). "The Morgellons Mystery". Psychology Today. Retrieved 2007-08-04.
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- ^ Stobbe, Mike (2006-08-09). "CDC Probes Bizarre Morgellons Condition". CBS. Retrieved 2007-08-04. Cite error: The named reference "CDC Probes" was defined multiple times with different content (see the help page).
- ^ Harlan, Chico (2006-07-23). "Mom fights for answers on what's wrong with her son". Pittsburgh Post-Gazette. Retrieved 2007-08-04.
- ^ LADHS Statement on Morgellons Disease, Los Angeles Department of Health Services, May 2006
- "Mysterious Disease Plagues More Southlanders". May 22, 2006.
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ignored (help) - Stricker, RB. The mystery of Morgellons disease: infection or delusion? Am J Clin Dermatol. 2006;7(1):1-5 PMID 16489838
- "CDC considers Texas for Morgellons study", My San Antonio News, posted Jun 26, 2006, accessed Jun 26, 2006.
- Itching for Answers to a Mystery Condition, TIME, July 28, 2006
- ^ Unexplained Dermopathy (aka "Morgellons") Centers For Disease Control, June 12, 2007
- 2007-Q-09877, Morgellons CDC Request for Quotation DOC
- ^ Morgellons Case Definition Morgellons research Foundation, 2007
- The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group"Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A (1994), Ann Intern Med, Vol 121, issue 12, pgs 953-9, PMID 7978722
- ^ Delusions of Parasitosis versus Morgellons Disease: Are They One and the Same? Ginger Savely, RN, FNP-C and Mary Leitao, Director of the Morgellons Foundation, ADVANCE for Nurse Practitioners,Vol. 13, Issue 5, Page 16 (5/1/2005)
- ^ The Mystery of Morgellons Disease Savely, Leitao & Stricker, American Journal of Clinical Dermatology, 2006, 7(1): 1–5.
- ^ Making Their Skin Crawl Benjamin Chertoff, Popular Mechanics, June 2005.
- A Medical Mystery: Delusional parasitosis Frank X. Mullen Jr, Reno Gazette-Journal, May 8, 2004.
- Human Skin Parasites & Delusional parasitosis The Bohart Museum of Entomology, UC Davis
- Persistent scabies-like condition may not be all in people's heads, Richard Fagerlund, San Francisco Chronicle, December 30, 2006
- Morgellons Investigation Summary Zaheer, et al, Duval County Health Department Epidemiology Program report. September, 2005.
- Morgellons Investigation Zaheer, et al, Duval County Health Department Epidemiology Program report. September, 2005.
- pp. 386-387 in Ash. L.R., Orihel, T.C. 2007. Atlas of Human Parasitology, 5th Edition. American Society for Clinical Pathology Press, Chicago, Illinois, 525 pp. ISBN: 0891891676
- International Lyme and Associated Diseases Society (ILADS)
- "Morgellons Disease, Cofield family", WKRG-TV, Mobile, May 22, 2006
- Clongen Labs
- "Investigation of Novel Organism Implicated in Morgellons Disease" MRF document
External links
- Morgellons Research Fountation
- Morgellons Watch Skeptical website.