CDC publishes Morgellon's Study

Skin lesions and fibers on patients with unexplained
dermopathy. (from  Pearson et al. PLoS ONE)

Yesterday the Centers for Disease Control officially released their long-awaited study of people suffering from a condition that has come to be called Morgellons.  Preferring to use the term "unexplained dermopathy," researchers provided no scientific support for the condition, leaving open the possibility that many such cases may be psychological in origin.

While the conclusions of study may be shocking to members of the media, public health experts and entomologists who regularly see people with non-existent bug problems are not surprised. A smaller study published last May found no connection between similar unexplained dermopathies and skin parasites.  And professional entomologists who regularly interact with the public are very familiar with samples of supposed biting insects and far-ranging descriptions pests that fit no profiles of real insects or mites. As I discussed in a post last year, some of these samples come from people with a special kind of delusion called delusory parasitosis, while others come from people experiencing allergic reactions, drug side effects, or other medical conditions. All of these can produce sensations closely resemble tiny bites or creeping sensations on the skin like a plague of bugs.

In recent years, some people with these unexplained skin conditions have sought an alternative explanation for skin lesions and the accompanying itching sensations.  The name Morgellons is a lay term supposedly originating from an obscure 1690 reference in a medical monograph referring to a similar condition of the time called "the morgellons." Though the condition is poorly defined, it usually involves seeing unidentified fibers associated with the skin, and many feel it is related to some as-yet-undescribed parasite.

The findings of this week's study in the online journal PLoS ONE, include:

• Approximately 50% of patients who underwent clinical examinations had fibers in or on skin lesions (open or crusted sores). However, when the fibers and other particles collected from participants were photographed and analyzed, they were found to be either hairs, cellulose, or polyester.  There was no evidence that the fibers preceded the lesions, caused the lesions, or occurred in normal skin.
• Evidence of prior drug use (i.e., from amphetamines, barbituates, benzodiazepines, cannabinoids, cocaine, opiates or propoxyphen) was found in 50% of clinical participants.  Drug use could account for some cases of unexplained dermopathy--formication (the sensation of tiny bugs, like ants, crawling on the skin) is a well-known side effect of drug use withdrawal.
• Over 75% of case patients reported some exposures to solvents through hobby activities. The  prevalence of such exposures among the healthy adult population in the U.S. is unknown and not enough data on type and duration of solvent exposure was collected to draw conclusions.
• The rate of functional impairment and disability found in case-patients was higher than the general population and similar to that detected among people with serious mental illness.

Prevalence of cases with Morgellons-like symptoms was low in the California study group, approximately 3.65 cases per 100,000 people (or one in 27,000 people).  While being the largest, most comprehensive study of  unexplained dermopathy to date, the study had limitations.  It lacked a control group and was mainly descriptive in nature.  Nevertheless the researchers say that they could find no unifying of definitive cause of the condition among people reporting Morgellon-like symptoms. The authors were unable to confidently say whether unexplained dermopathy represents a new medical condition or is another manifestation of delusory parasitosis; however a peer review panel concluded that in the absence of a single, well-described, published case with fibers emerging from intact skin, "it will be difficult to justify the resources needed to start a new study."

Ultimately this study will not end the debate over unexplained dermopathies, like Morgellons. People who believe they suffer from the condition will point to the inability of the researchers to definitively say that "there is no such thing." Dermatologists, physicians and mental health experts will point to the lack of evidence for the condition, the innocuous origin of the "fibers" seen in Morgellons cases, lack of any parasites in skin biopsies and data that suggests a correlation of the condition with psychosomatic illness and drug interactions.

The study concludes with the recommendation that, given there is still no definitive explanation for unexplained dermopathy, sufferers may benefit from standard medical therapies or those recommended for treatment of delusory infestations.  For sufferers of the latter I find the recommendations of Misha Heller and colleages especially humane and sensible. In their letter published in the Archives of Dermatology, they note that the most important step toward successful treatment of delusional patients is developing a strong doctor-patient relationship of trust.  Without adequate rapport, they say, patients are unlikely to comply with prescriptions for anti-psychotic medications, which can make all the difference in the life of someone suffering from delusory parasitosis.

All of this can be baffling to pest management professionals. After all, we're not doctors, nor are we trained to diagnose medical or mental health conditions in patients. Nevertheless, this is an issue that affects nearly all of us at some time over our careers.  When you encounter a customer who claims to have Morgellons, or who points to tiny pests that can not be seen, it's important to stick to what you know.

• Don't allow yourself to be persuaded to apply unnecessary insecticides to control insects that cannot be detected or do not exist. 
• Advise your customer to seek medical assistance for bite-like symptoms (Keep in mind, however, that many doctors are not well informed about pests or even delusory parasitosis. If you know a local MD or dermatologist who is informed about this condition, refer them). 
• Inspect the home, making use of sticky cards and pitfall traps, to ensure it is free of bed bugs, biting mites, and other biting insects. Remember, providing a customer assurance that their home is pest free can be as great a service as pest control itself.

Morgellon's syndrome and delusions of parasitosis

Typical sample from client with non-existent bugs.

A few years ago they came in matchboxes.  Today they're more likely to come in pill jars, Ziploc bags or on pieces of Scotch tape.  I'm talking about samples of nearly invisible items that clients believe are biting or crawling over their skin.  Though it's true that there are some tiny insects and mites that can bite or parasitize people, more frequently these samples turn out to consist only of lint or skin scrapings or insects that would never bite a human.

Most urban entomologists or pest management professionals who have been in the business long enough  know what I'm talking about. There are a surprising number of people seeking help from PMPs or entomologists, convinced that they are being bitten by non-existent bugs.  Some of these unfortunate clients suffer from an allergy, environmental sensitivity, medical condition or drug reaction that resembles a creeping or pricking sensation on the skin.  These good folks have a real medical condition, but are falsely persuaded that insects or mites are involved.

Other clientele are likely suffering from what doctors call a dermatopsychiatric condition, or somatic delusion--technical jargon for a mental illness that causes someone to believe and feel infested by bugs or other animate or inanimate objects.  The problem is common enough to have a name, "Ekbom's syndrome" or "delusions of parasitosis".

I don't know what percentage of the people I encounter each year are (in cases of physical conditions) illusional versus (cases of mental illness) delusional; but I have become convinced based on a variety of similarities and resistance to diagnosis that a high percentage fall into the latter group.

A diagnosis of delusional parasitosis is always resisted and often resented by sufferers. No one wants to hear that a very large problem in their life is psychosomatic.  Indeed the psychological definition of a delusion is "an unshakable belief that cannot be corrected by reason or logic, and which is inconsistent with a patients' intelligence, education or cultural background."  Even family members often find it hard to accept that their loved ones are suffering from a psychosomatic problem.

A paper published earlier this week by Sara Hylwa and colleagues at the Mayo Clinic in Rochester, MN represents one of the first published efforts to take a serious and critical look at specimens and skin samples from people who had been diagnosed with delusions of parasitosis.  A total of 108 patients previously diagnosed as delusional were included in the study. None of the 80 skin biopsies from these patients provided any evidence of skin infestations of any sort (including scabies).  Ten actual insect specimens provided b patients were assessed and 9 out of the 10 were determined to pose no risk of skin infestation (one was a pubic louse).  Most of the samples consisted of skin debris, environmental detritus, or plant material.

These findings are consistent with what I have observed for over 20 years as an extension entomologist.  During this time I have looked at perhaps 2 to 3 samples a month that turn out to not be insects. Encountering a delusional client is frustrating because, as an entomologist I can often recognize the problem; but there is little I can do to treat or solve it, short of educating caregivers. 

The Mayo study represents the first of two highly anticipated reports on this problem by medical researchers.  A second study is due out in a few months.  According to an article by Melissa Healy in the L.A. Times, this second study, being conducted by the Centers for Disease Control and Prevention working with Kaiser Permanente of Northern California, 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 Morgellons Foundation was formed by an online community of people resistant to the suggestion that biting problems can be psychosomatic.  They believe that there is a third possible explanation for cases where bugs can't be found--some mysterious underlying condition that causes the suffering of many or most people today being diagnosed as delusional.

I would, in some ways, be relieved to find out that there really is some organic cause for the suffering I see in many of the people who pass through our office doors each year. It would allow me to give such clients and their families hope that there's a non-psychological explanation for their torments.

I'm not overly optimistic, however. Mental illness is consistent with the irrational and compulsive behavior often exhibited by the bearers of empty matchboxes and Ziploc bags.  Often these folks will provide contradictory and illogical descriptions of their problems.  And the compulsive self-treatment, discarding of furniture, and extreme behavior to escape their insect pursuers is not normal or healthy.

As a PMP there are a few things you can do. 

• If the client cannot produce a likely specimen, use sticky cards around the home. Give the cards a week or so to trap anything suspicious. 
• Check the premises for signs of rodent or bird infestations.  Mites associated with bird and rodent nests can bite people, though they will not hitchhike or live on humans.
• Keep an open mind and take complaints seriously, but don't be pushed into making applications of pesticides that you cannot justify.
• Encourage the cliente to seek a medical opinion, pointing out that sensations of biting or creeping can be caused by things other than arthropods.  Be sure to include a family member or caregiver in the conversation if you can.
• Don't diagnose someone as delusional.  That's a judgment that can only be made by a health professional.  You are, however, knowledgeable about insects--likely more than the average doctor.  Stick to what you know.
• Don't forget to make use of third-party information when communicating with the client or with family members.  I have written a factsheet on Diagnosing Mysterious "Bug Bites" for this purpose.  Beware of information gleaned from dubious sources on the Internet--there is a lot of false and misleading information on this subject online.