If you are like most people, you have probably never heard of Morgellons disease or Morgellons. The first reason you have likely never heard if it is because it is so bizarre and uncommon. Most of what is known about it is based on rare case reports or anecdotal stories. The second reason is because it is not recognized in the medical community as a legitimate medical disease. It is a layperson’s term coined by a child’s mother.
People who claim to have this once mysterious condition report that all sorts of substances are excreted from their skin such as colored fibers, specks, dots, fuzzballs, worms, eggs, grainy substances, and other assorted solid materials. They report that they develop sores that are slow to heal and feel like bugs are crawling under their skin or have sensations of being bitten, stung, or experience pins and needles.
In addition to the dermatological (skin) symptoms reported, there are other non-specific symptoms reported (meaning they can have many possible causes) such as fatigue, concentration problems, memory difficulties, and depressed mood. Some of these patients have documented psychiatric disorders, some have genuine neurological conditions such as multiple sclerosis, and others have more controversial diagnoses such as fibromyalgia. Some of these patients claim to be disabled by their condition. No known medical cause has ever been discovered.
Most dermatologists consider the condition to be a psychotic disorder, which means that the person is detached from reality. Specifically, it is widely considered to be a form of delusional parasitosis, in which a person falsely believes they are infested with parasites.
Perplexed, the Centers for Disease Control and Prevention (CDC) ordered a study based on a request from Democrat Senator Dianne Feinstein due to an increasing number of people reportedly having this condition in her state of California.
A set of researchers conducted a search for patients in a managed care system with 3.3 million enrollees. 115 patients were found. The average age was 52 (range = 17-93), 77% were female, and 77% were Caucasian. 70% reported chronic fatigue. 54% reported poor health. 50% had drugs detected in hair samples. 78% reported solvent exposure. 24% had clinically significant histories of past or present drug or alcohol use.
But the most interesting part of the study was an analysis of skin samples. The most common finding was increased skin elasticity due to sunburn. Abnormal areas on the skin were most consistent with insect bites and scratched skin. There were no parasites or bacteria found. If there was something on the skin, it was usually was cotton from clothes.
When psychologicaly tested, 59% were reported as having cognitive deficits on a full battery of neuropsyhological tests in at least one area. Attention and memory were the most common areas assessed. Unfortunately, no tests were reported on that were used to confirm the reliability and validity of the cognitive test results and so one is left to wonder to what degree these poor test results are the result of poor effort to do well. This is important to consider because it is unknown how many of these patients were seeking compensation for these symptoms (e.g., litigation, disability application), which would increase the possibility of exaggeration.
Along these same lines, while a personality test known as the Personality Assessment Inventory (PAI) was administered, the authors only reported the results of the clinical scales (showing a high focus on physical symptoms). The results of scales on the test designed to measure the reliability and validity of the test results were not reported. Thus, it is unknown the degree to which some symptoms are over-reported, accurately reported, or underreported. Some of the test performance was almost certainly exaggerated, especially when one considers that of those patients with clinically significant somatic complaints on the PAI, 50% had elevated personality test scores that were at the 99.99 percentile, meaning that such scores are essentially never seen in the normal population. In fact, these scores represent extreme symptom endorsement even for patient populations. Researchers, as well as clinicians, should almost always include methods to assess whether the test performance and symptom presentation is reliable and valid.
Overall, Morgellons shares a number of features with delusional infestation beliefs and based on my read of the study, there is very likely to be an exaggerated component to the condition (at least in some people). It is interesting to note that over 75% of patient’s symptoms occurred after 2002, which was around the time that Internet postings about the topic began. This indicates that there is a suggestible or copy-cat component to Morgellons symptoms in some individuals, although some cases may truly represent psychosis (detachment from reality). The condition can also be considered a form of somatoform disorder, in which psychological distress is converted into physical symptoms that cannot be explained by a medical cause.
As to the origin of the term, it was coined in 2002 by Mary Leitao, who stated she had noticed “balls of fiber” coming out of her 2-year-old’s skin prior to sores developing. She found the word “Morgellons” in a 17th century book describing an condition in which black hairs were said to appear on the backs of children in France. However, there is no evidence that the two conditions are related.
Dominic A. Carone is a neuropsychologist who blogs at MedFriendly.com.
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