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 graduated with a BS in Biology, and worked for five years at 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 Hopkin’s 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 suffer from “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 suffered from “something unknown.”
She chose the name Morgellons disease (with a hard g) from a description of an illness in the monograph A Letter to a Friend by Sir Thomas Browne, in 1690, wherein Browne 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 the following information on its website. Morgellons disease is a poorly understood condition which a growing number of physicians believe to be a chronic infectious disease. The disease can be both disabling and disfiguring.
The symptoms include itching, biting and crawling sensations, “filaments” or fibers which emerge from the skin, skin lesions which range from minor to disfiguring, joint pain, debilitating fatigue, changes in cognition, memory loss, mood disturbance and serious neurological manifestations. At this time, the cause of Morgellons disease is unknown and there is no known cure.
The following signs or symptoms are the basis of Morgellons Disease as defined by patients that fit within a consistent boundary that is also outside the boundary of other “known” diseases. The initial three characteristics parallel a much more entrenched illness, Delusions of Parasitosis (DP) named decades before today’s laboratory technology and infection/immunity knowledge, driven by HIV, developed. The more recent findings listed below provide a far broader and more consistent evidence base, strongly supporting the likelihood that DP is a prematurely assigned label to an organic, rather than purely psychiatric disease.
1. “Filaments” are reported in and on skin lesions and at times extruding from intact-appearing skin. White, blue, red, and black are common among described fiber colors. Size is near microscopic, and good clinical visualization requires 10-30 X. Patients frequently describe ultraviolet light generated fluorescence. They also report black or white granules, similar in size and shape to sand grains, on or in their skin or on clothing. Most clinicians willing to invest in a simple hand held commercial microscope have thus far been able to consistently document the filaments.
2. Movement sensations, both beneath and on the skin surface. Sensations are often described by the patient as intermittently moving, stinging or biting. Involved areas can include any skin region (such as over limbs or trunk), but may be limited to the scalp, nasal passages, ear canals, or face…and curiously, legs below the knees.
3. Skin lesions, both (a) spontaneously appearing and (b) self-generated, often with pain or intense itching. The former (a) may initially appear as “hive-like”, or as “pimple-like” with or without a white center. The latter (b) appear as linear or “picking” excoriations. Even when not self-generated (as in unreachable regions of babies’ skin), lesions often progress to open wounds that heal incompletely (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.). Evidence of lesions persists visually for years.
4. Musculoskeletal Effects and Pain is usually present, manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches and vertebral pain are particularly common, the latter usually with premature (e.g., age 20) signs of degeneration of both discs and vertebrae.
5. Aerobic limitation is universal and significant enough to interfere with the activities of daily living. Most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome as well (Fukuda, Ann. Int. Med., 1994). Cardiology data and consistently elevated heart rates suggest a persistent myocarditis creating lowered cardiac output that has been partially compensated for by Starling’s Law.
6. Cognitive dysfunction, includes frontal lobe processing signs interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries.
7. Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering.
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 they have been contacted by over 12,000 families.
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.
In an article published in The Los Angeles Times on April 22, 2010, singer-songwriter Joni Mitchell claimed to be a sufferer of the condition, stating:
“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.”
Former Major League Baseball pitcher Billy Koch and his entire immediate family have been noted in the media to be sufferers.
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 CDC (Center for Disease Control) 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 will begin when the scientific protocols and review board structure have been prepared and approved.
Investigators will report on the geographic distribution of the illness and estimate rates of illness in affected communities. The investigation will involve skin biopsies from affected patients and characterization of foreign material such as fibers or threads obtained from patients to determine their potential source.
In January 2008 it was reported that 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 CDC said “We recently completed the data analysis. A final report has been submitted for publication in a peer-reviewed scientific journal.”
A study conducted of 108 patients at the Mayo Clinic was published in Archives of Dermatology on May 16, 2011. The study failed to find evidence of skin infestation despite doing skin biopsies and examining specimens provided by the patients. The study, which was conducted between 2001 and 2007, concluded that the feeling of skin infestation was a delusion, “delusional parasitosis”.
However, there are thousands upon thousands of people who share the same symptoms and so far the mainstream medical community is unwilling to admit to the symptoms that are very physical and inexplicable. Once again, it would appear that it is easier to say to the patient “You are crazy.” or attribute the specific symptoms as delusional and/or anxiety driven self mutilation.
Originally Posted September 25, 2011