CDC and Morgellons "Unexplained Dermopathy"

What the CDC Says:

What is the current status of the study?

Study recruitment, examination of participants, and collection of samples has been completed. The CDC says they are currently analyzing the data collected.

How will CDC communicate information about this condition and the findings from the study?

On September 24, 2009, CDC convened an external review panel made up of experts from the fields of dermatology, infectious diseases, public health, and mental health which examined the study activities to date and provided advice on future activities. The panel will provide recommendations and guidance to CDC about analyses they think should be conducted on the data. CDC’s CCID Board of Scientific Counselors met in November 2009 and was provided an update on the progress of the panel’s review (Preliminary Report on Progress of External Peer Review of CDC’s Unexplained Dermopathy Project to the CCID Board of Scientific Counselors [PDF, 11 KB]). When the CDC receives a report from the external review panel, it will be made available on the CDC website.

When data analysis is complete and results of the study are available, the findings will most likely be published in a peer-reviewed scientific journal and disseminated through other channels, to CDC’s public health partners, such as State and local health departments and medical societies, and through the CDC website.

In December 2008, the CDC mailed letters to state medical associations, in case they and their members received inquiries about this condition, in order to provide an update about the CDC’s activities. Letter from CDC to medical association [PDF, 45 KB] The CDC will provide an update to these organizations as well, when the study results are available.

Why did the CDC select Kaiser Permanente Northern California as the partner for the study?

According to the CDC there are several factors that led them to select Kaiser Permanente Northern California as the partner in this study. First, this condition is thought to be rare by the CDC; therefore, the CDC sought a location and an organization that would likely have an adequate number of affected persons to be able to conduct a careful investigation. Kaiser Permanente Northern California is located in a geographic area where self-reported cases of this condition are concentrated. Second, Kaiser Permanente has a membership that comprises a large proportion of the population in the Northern California area, thereby allowing estimation of rates of the condition in the population. Third, Kaiser Permanente has electronic health records that allowed a systematic method of identifying persons who may have this condition.

Who was eligible to participate in the study?

Participant selection followed a set protocol, and not all persons who identified themselves as having signs or symptoms of this condition were eligible to participate in the study. Eligible participants were required to live in the Northern California area, were at least 13 years old, had been a health plan member of Kaiser Permanente Northern California from July 2006 through December 2007, and had compatible signs and symptoms of the condition as described in the study protocol.

May I send samples to the CDC laboratories for confirmation of this condition?

The CDC is not able to accept specimens or samples for testing, and we are not aware of any public health labs that are performing tests specifically related to this condition. According to the CDC “Persons who believe they may suffer from this condition should contact a licensed health care provider for evaluation and medical care.” …even though doctors may not treat for Morgellons (and if they do they will have their licenses to practice medicine revoked)

Can the CDC advise on the steps that I should take to report this condition?

“Morgellons” is not a condition that is reportable.” according to the CDC. Persons who believe they may suffer from this condition should contact a licensed health care provider for evaluation and medical care. The CDC is not a clinical facility and does not provide clinical care or consultation to patients.

Does the CDC plan to expand the study to other locations or include other persons who may be affected with this condition?

The current study was limited to persons living in Northern California and to persons who met the study’s eligibility criteria. Decisions regarding future studies will be determined based on the findings of this study and on recommendations from the peer review panel.

If I have more questions about the study, what should I do?

Inquiries regarding this study can be sent to:
Email: morgellonssyndrome@cdc.gov or
Phone: 404-718-1199 (Pre-recorded message with voicemail)

The CDC says that at this time, they are not able to provide individual responses to each inquiry, but their public inquiry e-mail and phone line are checked regularly. Answers to frequently asked questions will be posted to their web site, and their web site will be updated with new information as it becomes available.

NOTE: The CDC last updated that page on November 5, 2009 – Over one year ago in spite of having all of the Kaiser Permanente data results already in their possession.

NOTE: The CCID Board of Scientific Counselors (named by the CDC as receiving updates on Morgellons from the independent update council) has not conducted a meeting on the question of Morgellons in the last 365 days: http://www.federalregister.gov/articles/search?conditions[term]=morgellons&commit=Go

The same result searching for unexplained dermopathy: http://www.federalregister.gov/articles/search?conditions[term]=unexplained+dermopathy&commit=Search