Probing a mystery: CDC investigates Morgellons

March 1, 2008

Atlanta-The Centers for Disease Control and Prevention (CDC) apparently is serious about finding the causes of and treatments for a mysterious condition known as Morgellons disease.

Key Points

Atlanta - The Centers for Disease Control and Prevention (CDC) apparently is serious about finding the causes of and treatments for a mysterious skin condition known as Morgellons disease.

More than a year after announcing its intention to launch an investigation into Morgellons, the CDC has now done that.

The agency announced in January that, in conjunction with Kaiser Permanente's Northern California Division of Research, it will begin studying the as-yet-unexplained skin affliction whose victims report symptoms such as sensations of crawling, stinging and biting under the skin; skin lesions that range from minor to disfiguring in their appearance; and fiber-like material that emanates from the lesions as either single strands or clusters of fibrous material.

CDC officials say the Kaiser Permanente Division of Research was awarded a $338,000 contract to assist the agency in the investigation.

Officials say Kaiser was chosen because of its location in an area where reported cases are concentrated (others are in Southern California, Texas and Florida); the size of the patient population from which to draw (Kaiser Permanente covers about 30 percent of the Northern California population); and its ability to identify patients who may have Morgellons.

Partners in probe

In a Jan. 16 press conference to announce the investigation's launch, Michele Pearson, M.D., CDC principal investigator in the study, said, "CDC is taking a multifaceted approach to this investigation with other external partners, including the Armed Forces Pathology Institute. We have a team of epidemiologists, laboratorians and pathologists to carry out the study."

She says the study's primary goals are to better describe the clinical and epidemiological features of Morgellons and to identify possible risk factors.

"To date, the cause of this condition is unknown, and there is insufficient information to determine whether persons who identify themselves as having this condition have common cause for their symptoms or may share common risk factors," Dr. Pearson says.

"What is clear, however, is that those who suffer from this condition, as well as their family members and physicians who provide care to them, have questions, and we want to help them find meaningful answers. We believe that the suffering that many people associate with this condition is best addressed by a careful, objective, scientific analysis."

During the press conference, Joe Selby, M.D., director of Kaiser Permanente's Northern California Division of Research, said the study will consist of three stages.

"In the first stage, we will identify all members who may have seen a Kaiser Permanente physician with symptoms suggestive of this condition at any point during the 18 months between July 1, 2006, and Dec. 31, 2007, and determine whether they meet eligibility criteria for this study," he says.

"In stage 2, all eligible members will be invited to complete a comprehensive Web-based or telephone survey conducted by the CDC that examines the duration and severity of a variety of symptoms, reported exposures, other possible precipitating factors and emulating factors, including treatments that may have been found to help.

"And in stage 3, those with active symptoms will be invited to come to the Division of Research for an extensive clinical examination including collection of skin biopsies and blood and urine samples."

Dr. Pearson estimates that it will take at least 12 months to complete the investigation.

"We are certain that this study will not provide answers to all of the questions, and that this may be one of many studies that will need to be done on this condition," she says.