The name Morgellons originated in 2002. That year a mother took her young son to doctors reporting that he was complaining of “bugs” in his skin. He had sores under his lips and the mother reported seeing fibers in these sores. She named her son’s illness Morgellons and started a website to raise awareness and research funding for the disorder. The boy’s doctors found no specific abnormality and believed that the mother was suffering from a psychiatric condition.
Since then many patients have presented to medical attention reporting disturbing skin sensations (sometimes described as something crawling on top of or under the skin), skin sores, and various forms of solid material coming out of their skin, frequently fibers or threads. Many of the physicians examining these patients believed that they suffered from delusional infestation (also known as delusional parasitosis), a disorder in which patients are convinced that they are infested with parasites or other germs. Delusional infestation (DI) has been described for over a century and is very difficult to treat. All tests checking for an infectious or allergic cause are of course negative, but patients are not reassured by the normal results. They are agitated that the physician has (again) failed to discover the cause. The patients never respond well to factual evidence arguing against their delusion and typically refuse psychiatric referral.
The generally recommended approach in DI is for the dermatologist or primary-care physician to build a trusting relationship by acknowledging the patient’s distressing symptoms and the disruption that the symptoms cause in the patient’s life. (This is neither patronizing nor dishonest. Patients with DI are frequently quite fixated on their symptoms and the disease frequently strains relationships and careers.) Rather than confront patients with the diagnosis of DI, doctors are encouraged to use the synonymous but less judgmental term “unexplained dermopathy”. Occasionally physicians are able to convince patients to try antipsychotic medications by offering them as a way to decrease the skin symptoms and explaining that others with the same disease have done well with this medication. Some patients achieve relief with these medications, though it’s not clear how frequently.
So DI is a particularly difficult condition to treat, because a defining characteristic of the condition is the unwillingness to accept the diagnosis. That makes the doctor-patient relationship very difficult, since the physician needs to earn the patient’s trust without being fully transparent. Imagine if one of the universal characteristics of diabetes was the refusal to believe that one has diabetes.
Add to these difficulties the wonders of the internet. Patients with Morgellons, feeling wrongly dismissed by doctors who diagnosed them with DI and confident that their disease is caused by an infection or an environmental exposure, have used the web to organize and lobby Congress for a study to determine the cause of their affliction. So between 2006 and 2008 the Centers for Disease Control did just that, in the largest study of Morgellons to date. The findings of the study was published this week in PLoS ONE and summarized on the CDC website.
The study enrolled 115 patients in Northern California with symptoms matching Morgellons. Patients were put through a systematized and extensive diagnostic work up, including a detailed demographic survey, a comprehensive history and physical examination, photographs of the whole body and of individual skin lesions, skin biopsies, analysis of any foreign material found on the skin, and numerous lab tests of blood, urine, and hair.
The results show that Morgellons (or unexplained dermopathy) is rare, affecting about 4 people in 100,000. Three quarters of patients are female, and three quarters are Caucasian. Most are middle-aged. The exhaustive evaluation failed to find a common infectious or environmental cause of the disorder. Significantly, the patients’ residences don’t cluster geographically, which would be expected with an infectious illness.
The skin lesions varied substantially and didn’t demonstrate one homogenous type. The location of the skin lesions was fascinating. Most arm lesions were on the back of the arms with sparing of the front surfaces. Back lesions usually spared the center of the back. Lesions that originated in the skin would be expected to be more uniform in distribution. A disease that originates with scratching otherwise healthy skin will show lesions where people preferentially scratch. Skin biopsies showed mostly the consequences of chronic scratching, bug bites, or the effects of chronic sun damage that is common in California. The fibers were mostly cotton fibers common in clothes.
Psychological testing showed abnormal attention to bodily symptoms in two thirds of patients. Half had recreational drugs detected in their hair samples.
The authors conclude
This unexplained dermopathy was rare among this population of Northern California residents, but associated with significantly reduced health-related quality of life. No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation.
In the absence of an established cause or treatment, patients with this unexplained dermopathy may benefit from receipt of standard therapies for co-existing medical conditions and/or those recommended for similar conditions such delusional infestation.
This is very helpful information obtained through much meticulous work. But how will it be received? What happens when the internet, a global engine of transparency and information sharing, collides with a disorder that reacts poorly to the truth?
CDC Study Finds Fibers Aren’t Cause of Morgellons (Wall Street Journal Health Blog)
Morgellons not caused by infectious agent, CDC researchers say (Los Angeles Times Booster Shots)
CDC Study of an Unexplained Dermopathy (Centers for Disease Control and Prevention)
Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy (PLoS ONE)